I'm pretty much at my wits end now with Jess. Foodwise we have regressed even further and barely eats any solids, maybe 5 rice crackers a day? Refluxwise she ends up sleeping with me 6 nights out of 7, constantly has ice blocks to ease the pain in her throats, sucks on her thumb and is quite lethargic. Bottle volumes are constantly down and her weight is the same as it was at the begining of the year, and has dropped down to the 10th percentile. If it wasn't for Neocate Advance she wouldn't be here anymore it's the only thing that keeps her going, and she's constantly on the edge of having enough and running out of energy and crashing.

we saw the gastro-paed earlier this year and he got us trialling domperdome (sp??) to help with the constipation issues, but she's reacted to every drug we've tried (Nalcrom, Singulair, etc) and we've had to increase her lactulose to manage the constipation which is constantly getting worse. her food intolerances are getting more and more sensitive and I can't ever see a time where she might be able to actually eat real foods. She's 3.5 years old now and we're basically at exactly the same point as when she was about 6 months old.

We have had to recently increase her losec dose and she's nearly at the maximum again. In spite of this she has had a permanent red throat for at least a year and a half (not tonsiliitis as gp has checked many times) and is due to oesphagitis.

Every time she jumps on the couch or a tramp etc she has another reflux flare up (I think it's the valve at the top of her stomach loosening up) and it takes another few days to settle down again. she has to sleep with her sleep wedge to keep her stable.

I hate seeing her like this, and I just can't see that things are ever going to improve. Her quality of life isn't fabulous and I'm sick of going between the allergy specialist and gastro paed and told to keep on waiting. I've been contemplating getting a second opinion and getting a referral to see another gastro-paed at starship as our gastro paed doesn't want to consider surgery until kids are teenagers and can make the choice of surgery for themselves. He's told us to come back at the end of the year and I'm tired of getting nowhere again and again. I mean at 3.5 has she really got any chance of outgrowing reflux?????

Sorry for the novel. I'm just not sure what to do next. whether to just keep on waiting ... and waiting .... and maybe by the time she starts school she might be able to tolerate ANY foods ... or maybe not??? How much do I follow up my gut instinct and push this further? How much do I trust the specialist who just want me to wait and bounce me back and forth trying to figure out what the heck is going on. Oh wait, that's right, they've pretty much got no idea what's going on and what to do about it .....arghhhhhhhh

Oh crap Dolphin!

MY gut says you have to push this further for her health and development.
There is no reason to wait until teens so they can decide - the damage inside could be incredible by then - William had some cellular changes happening and showed damage from the long term reflux and he was 11 at surgery.

Even with the extra challenges Nicholas has given us over food I can say, hand on heart, for my boys surgery was the best thing we've done for them.

Can you even go out of town for a completely fresh look?
I know our surgeon is highly respected countrywide - he was reluctant to operate on Thomas until we'd exhausted every possibility but he did acknowledge early on that Thomas was not going to outgrow the reflux aged about 3.

Hugs - I know the horrible place you are in right now!

To be honest I dont see a light for any of us. Even with surgery the food issues will still be there? I have found something really odd has happened here lately and that is that DS has been alot better with LESS neocate... weird I know! but the hospital psych (who is currently working with his food adversions) suggested that we ride out the food reaction and only give neocate at night to encourage him to eat ( as at his age he only needs 400mls of advance a day to get all his dietry needs). Its been a bit hairy but I think we are winning. I personally would push for more tests since the last ones didnt show anything and her throat is still red, I guess a second opinion could help. Although the starship gastro we see is in the same team as the one you see... so share the same views from what you are saying. What kind of reactions are happening in regards to the foods and meds> and is she any better when they are stopped?

Huh Lelo?
I'm curious - our dietician has been a little interesting at times but she says Thomas - a yr older than your son - needs 600ml of Neocate Advance to get all he needs. Thomas is dairyfree though so maybe that's to get the calcium...

If the surgery is done and the reflux is gone then you aren't continually reinforcing the food = pain message your kid is getting. It took Thomas 6 months after his surgery to finally realise what hunger is and that he needs food to fix it.

As I see it, and the psychs I've worked with, as well as the SLTs, all agree that there is no point doing the psych work needed to overcome a food aversion if food still causes pain.
Even the feeding clinics overseas all require you to have completely resolved the medical causes before you start work on the eating.
Yes, the allergies will still be there post op but at least you've ruled out one confounding issue.

Feeding the formula only at night will give the chance to experience hunger during the day but that assumes they will drink it at night. It was Thomas' reluctance to feed of any kind and his very low weight that brought us to the point of needing a feeding tube - which gives him overnight feeds so we can slowly work the eating thing out.
He's making slow but steady progress with his eating - eating is a slow and difficult process for these kids to re-learn and there are no quick fixes sadly!

Hugs Dolphin!

Dolphin. I really feel for you & your DD.

I pretty much lost the plot after 2 years of dealing with Lochie's chronic reflux and we didn't have the complicating issues of allergies & restricted diet to cope with so I can only imagine what you & your hubby go through each day. You must be exhausted!

My feeling would be to trust your instincts & if you think that another opinion is warranted then go for it.

Obviously we went the surgical route & while I have no regrets about that, it is a huge decision to make and one we only made when we had exhausted all other options (which were limited anyway). We consulted 3 paeds and got the same advice from all 3 so that made us a bit more comfortable with our decision.

Good luck & more

Aww Liz, big hugs.
I was just thinking about you yesterday, wondering how the girls were doing.
Get a second opinion.
My SIL just got the name of a new gastro paed who has recently started up in Auckland.
I could get the name and number for you if you like.
Otherwise try the Starhsip ones.

Lets catch up int he holidays for a de-brief/bit#h session.
I will call you!

Thanks Suomi. Would love more details if there is another private gastro-paed in auckland! And definitely up for a catch up this hols.

Thanks to everyone. It's boards like this that help me keep on going some days.

For those of you that have been down the surgery route, or those that have/are holding off on surgery, what kinds of things convince you to go ahead or not go ahead? Is it all down to the paed in charge recommending it, or how much is it parents pushing? Or other factors?

I keep going backwards and forwards between having a little hope (usually just after I've seen either of our specialists - the gastro-paed and allergy spec) that maybe waiting is the better option, and maybe, just maybe, cause Claire has got a bit better, Jess will improve (that seems to be the current argument, but Jess and Claire have always been vastly different cases altogether, and Jess has always been significantly more severe with her reflux, and has had major issues choking and gagging where Claire hasn't, and we've been able to reduce Claire's losec about a year ago down to 20mg, while Jess has just had an increase up to 35mg a day). But then we get weeks and weeks in between visits, that just seem to be a neverending round after round after round of flare ups over the silliest things, like jumping on the couch ... I mean really??!! Jumping on the couch, or even worse, on a bouncy castle the other day has cause 4 days of misery and barely eating!

One question I wonder about, is what effect surgery would have on any choking/gagging? I have read somewhere that the Fundo makes it much harder for them to regurgitate and vomit, but does it make the gagging etc worse, or no different?

We've had a scope done about 2 years ago now and it showed up reflux, surprise surprise, and we've had a barium swallow done when she was 12 months old which showed up a mild oesphageal motility problem. Given that she now is having major issues with constipation, and probably gut motility, and that the tests and scope were a couple of years ago, are there other tests etc that the paeds would usually want to have before going ahead with surgery?

One thing that does concern me about sugery is the possibility of the wrap coming undone. Does anyone know how often this might happen?

the million dollar question is whether the underlying reflux is causing damage to her stomach and lining and therefore increasing her sensitivity to foods, or whether her sensitivity to foods makes her reflux worse. Or whether there's a bit of both .... I'm just really feeling like she's going to go to school still needing her 4 bottles a day of Neocate advance.

It's kind of come to a head at the moment cause we started her at kindy a couple of weeks ago, which she LOVED and she is so ready for socialising with other kids etc. BUT .... because she wasn't getting her bottle at 2:30pm like normal, and getting it an hour later, everything just completely went out of control. She just got ferral in the evening, things flared up worse than ever, and there was simply no way she'd drink her bottle at kindy. So now I'm trying to find another kindy that does mornings (and doesn't have a waiting list a mile long) where she'd cope better, to try and keep things as "normal" as I can. But I really don't want to hold her back developmentally, and I'm starting to feel like we're hitting the wall now and the reflux is holding her back and limiting her development more than we've coped with as littlies.

Eleanor - why did you make the decision to home school your boys? Was it reflux/food eating issues, or more the ADHD and other issues? Or a combination of everything?

Thanks so much gals. You're all awesome.

Hi Dolphin

Haven't been here so long I had to log in! Obviously I got your email. I have only skim read and have to go deal with Gem who is not at all well tonight so shall be a short reply.

Surgery for Gem even with food reactions was great for two years. I wouldn't discount it. Like others here, it was the last option. I did not have to push for it. The paediatrician who knew us well said there were no more options. She was six years old.

I would doubt that the food issues for Jessica are too great as they are delayed reactions. Yes, I know they can still cause major problems but I think she needs to have more positive experiences around food - and yes, maybe this involves surgery.

The motility problem in the oesophagus may be an issue. This can cause problems with the surgery so I have read somewhere. Gagging was less for Gem though, as I think this occured with the GORD rather than anything else. Sort of a fight to keep things in her stomach.

Have I answered the main questions? If not, email me again and I will when I can.

Off to give Gem some antiemetic and take her to bed with me I think to see if I can get her to sleep. Haven't done this since before her surgery at six years four years ago. Have no idea where hubby is going to sleep. He doesn't know yet.

Thanks Roz. I've been wondering lately how much of the food reactions are because her stomach lining has been stripped due to the excess acid (Rohan suggested this might be the case last time we saw him).

How does the surgery work in terms of the stomach still producing excess acid? I've got the impression that the surgery will stop the acid going back up her oesphagus and so stop the acid burns and encourage eating cause it won't hurt. But from what I understand this won't stop the stomach producing excess acid? Or does this become redundant after the surgery cause the problem is not the quantity it produces but rather where it goes? I'm wondering in terms of her food reactions whether it will still cause problems with the lining of her stomach, or because we'll then be able to stop the losec, the gaviscon, this should stop the constipation problems and will make the stomach much more "normal" and therefore allow it to settle? Does this rambling make sense?

I'm certainly not even considering surgery for Claire, cause she is significantly better and only very rarely ever gets a red throat, and it's only ever a flare up due to a food reaction. She hasn't got any of the issues that Jess does and eats pretty normally, just on a restricted diet. But the difference between her happy life, and Jess's struggle to enjoy life are so huge that I'm definitely at the end of the list of options now.

Elenor- now that u mention it I 'think' it might of been Kayla who we were told only needed 400mls of neocate advance not Leo. Kayla only 8kg and df. I cant remember now.. sorry.

Has your gastro pead suggested surgery Dolphin or is this just your thoughts on solving the problem.
Surely before allecting surgery would it be better to tube feed to get her volumes/wieght up if she is failure to thrive to see if that makes here life more manageable,gives her a full tummy and generally make her feel more normal and a happier child. It would take the stress of eating away which seems to be a problem you thats been created. You say daycare delayed giving her her bottle by a hour Dolphin shes not a newborn shes nearly starting school, I dont see that as grounds to remove here from daycare when she clearly enjoying it. How can having a bottle an hour later at 3.30 reflect on her behaviour that night???
I really still believe and have stated this before to you... that alot of the childrens behaviour stems from there lack of eating and them having low sugar levels.Any child I know that is hungry tantums and carries on its the nature of the beast!! Surely a 3.5yr old needs more than 5 rice crackers a day any kid would be miserable on that amount of food. I relise your predicament I have a child with EE so fully understand what it is like endure food battles on a daily basis. Allergies and intolerances are hard but sometimes I have just had to work through these and after the initial reaction things can come write.
What clinically have they been diagnosed with. I can not see a surgeon wanting to perform such a major operation with no medical grounds.
Another thing is that no two children are the same.It is very hard to compare your kids circumstances to somebody elses they are all individual cases.

HK - surgery has been mentioned several times to us now as we are getting to the end of drug options.

Jess normally drinks enough Neocate Advance to keep her weight consistent, so I'm very reluctant to go to a tube as when she's not reacting badly she quite happily drinks. So there isn't a lot of stress around eating for her, as we have backed off completely and allow her to have as much or as little as she can handle on any day. The Neocate keeps her going, but we can't keep going on this forever. She still has 4 bottles a day, and drinks between 600-900mls of concentrated formula which barely gives her enough energy to get through the day.

We had to take her out of kindy cause delaying the bottle by an hour caused a major reflux flare up an hour or two later, cause her tummy was producing the stomach acid at a time it normally expected her to drink, and delaying this an hour meant the stomach acid wasn't been soaked up by the formula, and instead being regurgitated up her throat, causing more oesphagitis. It also meant that having this bottle an hour later meant she wouldn't drink enough in her last bottle of the day, causing more energy issues etc etc. Vicious cycle. And the staff there weren't really able to cope with any of the behavioural stuff that comes up as a result.

Clinically Jess has been diagnosed with reflux (the scope at 18 months), and at 12 months was diagnosed with mild oesphageal motility problems (but the gastro-paed expected this to be grown out of, but we haven't done a repeat check since then). She's also been diagnosed with mulitple food intolerances (RAST test repeatedly come back negative, and patch testing at 15 months showed a number of reactions) and FTT (which she just outgrew end of last year, but I think this now needs revisiting). So I think we need to do some more tests to ascertain whether or not the motility issue is a problem, or whether the constipation is simply due to the high levels of gaviscon, concentrated formula, and primarily being bottle fed. If there are still motility issue in her oesphagus, and she hasn't outgrown these as the gastro-paed thought would happen then surgery becomes a little more complicated.

The only other motility med that the gastro-paed was prepared to try (and only if it was absolutely needed as there are very strong side effects to it - which in my opinion are not worth taking it as they'll make quality of life even worse) was maxalon. And that's the only other thing he's got up his sleeve ...

Rohan has got nothing left up his sleeve, at the last visit we trialled the only other drug he had left to suggest.

So this is why I'm thinking about getting a second opinion, to see if there are any alternatives left for us, and want to talk to all of our specialists now to confirm that what I think I've been hearing from them is what I think it is. I then want to get any other tests/scopes done that will help to tell us further exactly what is going on, and if they come back as expected, then I am seriously contemplating surgery for Jess to improve her quality of life. I can't even let her bounce on the couch or bed, let alone a trampoline as the valve at the top of her oesphagus is so weak that this causes a major reflux flare up. Swimming is a no go as the tiny amounts of water she inhales causes a flare up, swinging too much, or horsey rides on grandpa's back causes a flare up taking days to settle down. It's hard enough that she can't eat so many foods cause of reactions, without letting her do so many "normal" activities. And somedays the only thing that gets her through the day is to spend hours in front of the tv, curled up in her chair cause it's the only thing that distracts her from the pain. Nights are still a nightmare, and I've had to take quite a number of days off from my study this year so far to stay at home helping her recover and trying to convince her to eat or drink anything.

So no, I'm not jumping into this, and yes surgery has been talked about, and I'm at the stage of finding out whether it is going to make the kind of difference I hope it will, as we've spent 3.5 years waiting for improvements that are STILL not happening. She and we can't keep going on like this forever, especially as it's making more and more restrictions in her quality of life recently.

As always, posting on here helps me work through, think through, and get ideas from everyone. I really do appreciate everyone's thoughts.

Didnt you say thought that your gastro pead would not perform surgery until she was a teen and could make that choice for herself, that is why you were seeking a second opinion on surgery?

He strongly prefers to wait until their teenagers, providing that the reflux can be controlled by medication. However, he said to us at our last viist that he does recommend it for children whose reflux can't be controlled by medication, or other specific conditions. He is very reluctant to move to surgery for any of his patients in general, but he did talk to us about this as a possibility for Jessica if things couldn't improve.

Part of the reason I want a second opinion is that we've often had difficulties communicating with him, and have found several times in the past that he hasn't really listened to us, and just sent us on our way without really taking the time work through everything.

By reading this she clearly isnt getting enough Neaocate to sustain her throughout the day to maintain wieght and energy levels
What will you do in a year when she starts school?? Surely tube feeding would be a option if this is the case??She really needs to get her solid food intake happening

What do Jessica's health professionals say about her level of solid food intake? I think this is the major problem. No solid food and only liquid food, will increase reflux. Neocate Advance, whilst not causing any allergic reactions, is likely to increase reflux in my experience. My eldest finds her supplement which is elemental, increases her reflux. Do the health professionals know that she is only having a small amount of food per day? Is she still having a bottle rather than a cup? Just thinking about normalising food.

I can't answer the questions about acid in the stomach post surgery. I'm just not in a place to answer that. Ask the surgeon if you get to that point.

BTW - hugs! It is not easy.

Good thoughts gals. I think some of this is at the heart of what has been bothering me for a long time. All the professionals just keep telling me to wait. That at least she's getting nutrition from her neocate so it's all fine.

the reason for staying on bottles is that it has the fastest flow, while through straws or cups she simply doesn't drink fast or strong enough to get a decent intake. our dietician has suggested we keep the bottles going as it's pretty essential she drinks even the amounts she does. Otherwise we'd be in bigger troubles and definitely be tube feeding ....

I am pretty terrified of going to tube feeds, and i feel like it would be a backwards step for her eating/drinking and that then she has no reason to try and strengthen her mouth and oesphagus muscles. But maybe I'm thinking about it wrong, and maybe it would take the pressure off for her, and reduce the volume and therefore reduce the reflux ... but then having a tube down her throat, would that force the valve at the top of her oesphagus to stay open, increasing the chance that the acid will come back up?

I've worked so darn hard, spending 8 months feeding the girls while asleep in their cots when they were little, and all the other stuff we've already been through to try and avoid the darn tube. I just honestly don't know which way is up, and which problem is causing what, and what the "solution" is ... but I do know that at 3.5 years old, her eating habits are just atrotious, and can't continue, and I'm really really tired of all our specialists telling us that it's ok for now, out of control reflux and limited diet (to this level) is fine cause she's still getting the essential nutrition and to just keep on waiting. I think that the waiting needs to stop now, and something has to change, and the specialists need to stop "accepting" that just because Claire has improved that Jessica will too. They are so different and always have been. Definitely a disadvantage to having twins, they specialists just see them as one big entity rather than 2 individuals who need different things and have different problems.

There was another question you asked, that I have only just remembered.

Yes, there is still a chance that she will outgrow it. I know of a child at age four, who outgrew GORD - mum was having to sit up at night with her to get her to sleep and suddenly... I think osteopathy was a help for this child and in fact they referred us to our lovely osteopath. Have you tried this recently? Anything non-invasive is worth a go.

I totally agree with Roz about increased reflux with a liquid diet as i think I mentioned earlier Leo is SO MUCH better with less neocate. To be honest I didnt see a day where he would stop taking a bottle and take to a cup/drink bottle... IT will happen... it just takes time. I know its hard to focus on the now when things are so out of control but it has helped me alot. I am doing all in my power to avoid surgery so look at things a bit differently. I have spoken to 2 different paed surgeons and neither promise it is a permanent fix and it is the last resort. We have been told we have room to move with meds with Leo so im sure you could explore that option further. They both told me also that surgery is usually only for those with issues associated with reflux, including Failing to thrive long term tube feeds, frequent pneumonia, developmental delays or kids that aspirate. I realise this isnt always the case but surely helped me to realise that it wasnt a quick fix.

The specialists are trying to help they are trying different things but Jessica seems to react, but are those reactions so severe longer trials arent worth it? I also believe many of our issues are learnt behaviour is it worth working with someone who deals with psych issues? A SLT or something? I personally would be pleased that the specialists arent initiating anything too invasive, ie tube feeding etc. As they must not deem it necessary. 600-900mls of neocate would be keeping her very full & would effect her appetite in my opinion.

What is Jess eating??? What kind of behaviours around food are concerning you?? Is the specialist at all concerned about these? Do you think that Jess may feed on your stress? I know Leo does & the more I told him he couldnt have x y z the more he performed about wanting it. I find if he has more options he wont eat the things he knows make him ill (in saying that I keep him df). I have also found that daycare worked wonders in normalising food intake and he leant that having a bottle at 3.5 years wasnt 'normal' and that encouraged him to eat a little more. I think too kids learn so much from their peers.

Sorry for all the questions seems to be a long time since we have chatted. big hugs and I really hope that you find something that works for Jess. I love hearing all the opinions on here and peoples experience Often we feel alone but were not

Sorry if you have misunderstood me about tube feeding but what I was meaning by tube feeding was if the specialists had thought that was a option due to a medical condition they would be doing that before surgery. A few years ago Dolphin you were having the same eating issues surely you have exausted all options and it is clearly learnt ..her not eating.I do think you need to take her to see a specialist in that field that could help her overcome her issues and get her to experiement and actually enjoy the pleasures of eating.
I too believe she needs to eat and that is probably more so the root of all the problems. Giving Neocate is bandaiding her hunger. I know in the past you have tried reducing her liquid to make her feel hungrier and seemed to remember you thought she was reacting more. Maybe as you are now on holidays you should be looking into doing some food trails while you have the time to devote to it??

Dolphin - William's had 2 birthday parties so I've only just got on to the comp.

Homeschooling was a choice we made because of William's battles in school due to an autistic spectrum disorder (Asperger's) and then later Nicholas' ADHD etc. So not reflux generated if you like.

Since Jess is reacting so much I think you'd be hard pressed to get someone to agree to a tube without doing a fundo, nor would it be a good idea. An ng is known to increase reflux and food aversions and not recommended long term. A gastrostomy like Thomas has changes the shape of the stomach a little and so can also increase reflux.

I'm afraid that I wouldn't agree that because they aren't suggesting invasive measures it means they don't think it's so bad. The surgeon didn't want to act for Thomas until he'd checked everything out and was sure himself - which I thoroughly endorse but...Thomas was falling behind developmentally, having big impacts on his health, brain development etc. He'd get so tired you had to keep checking on where he was because you'd find him in a corner somewhere crying. No one took that seriously until one day at the paed's when I said to Peter, who was closest, to check on T - he was head down in the toy box in the corner and when he pulled him out was silently crying and clearly had been for some time.

As for acid and the tummy lining - as I understand it there is a very rare condition which causes excess acid but otherwise the problem is that the stomach lining is designed to take the acid but the oesophagus lining isn't because it's not meant to get there! All the kids have stopped gagging since surgery or vomiting unless something gets stuck before the wrap, or they bring it up before the wrap. In fact W overfilled himself today at one of his parties and commented he felt sick much to the other 12 yr olds delight. I said I wasn't worried as he still can't vomit post nissen and the boys thought that was even cooler that he simply couldn't do it!

I've said before, the SLTs, paeds and psychs I've dealt with say that working on the psych issues are pointless if there is still reflux causing pain. It doesn't matter how many times you tell the kid not to be scared of eating, that it won't hurt if it does! It's a self preservation technique - unless you are a masochist you don't seek out activities you know are going to hurt.

Anyway - I've got to clean up after the last party as I'm on my own. William fell playing games outside and has broken his wrist so Peter's at the hospital with him.
I'll be back tomorrow so if you have any questions then Dolphin - pop them down and I'll do my best with our experiences of the surgery and why.

dolphin, i look after 2 siblings who have both had nissans and who were both tube fed (one a gastro and one a gastro/jejunal tube). the oldest boys nissan was successful however the younger one's, a girl, wasn't. she had it done twice and both were unsuccessful.

The girl had severe reflux (she was fed directly into the jejunum, so bypassing the stomach, and still would vomit up stomach bile from her stomach), she also had multiple food alergies and severe food aversion. at 4.5 she wasn't eating anything, she was totally milk fed (neocate and duocal). It was basically accepted that this was her lot and the surgeons (highly respected ss surgeon) and her gastro drs believed that she would remain this way till she was closer to 10 if not a teenager. She was very very slight but growing anyway (just) but she would not eat a single solitary thing. just licking a bit of puree made her gag and gag until she puked. she didn't take any fluids into her mouth either.

well the same girl is turning 6 soon and she no longer has her stomach tube, and is completely orally fed. she eats everything the family eat and only has one cup of neocate a day extra to her meals. she's growing though is still slight, and she will try anything pretty much. her only dietry restrictions are around the dairy and egg allergies she still has.

what has changed to make such a significant difference in only a year? well i guess she's a bit older and bigger so the reflux issues have probably receded somewhat. and her dad remarried. and his new wife had zero tolerance for her food aversion. initially it started with me being really adament she had to eat her puree at kindy and from there it progressed to her having to sit at the family dinner table and at least lick some of the food that was put on her plate. that progressed to trying small bites and now to eating properly, all meals served to her. she no longer is milk fed overnight through the tube (infact the tube has gone) so has an appetite and with the lack of milk, i imagine came a decrease in the reflux aswell. But most definately, the biggest factor in all of it, was the complete intolerance to the aversion. It started slowly of course, but end of day it was expected that she could and would, eat anything and wallah, she does. she was nolonger pampered and pandered too, no more mucking around and accepting that she would never eat properly, and what would you know, she could and would eat. it was a total shift in thinking (due to the stepmum) and it worked. And i will say hand on heart, if it wasn't for this kind of attitude, she would still be fully tube fed today. her allergies and reflux would still be used as an excuse for her not eating and everyone would just accept it as being the way it was to be.

So, from seeing first hand the change (and honestly, the story is almost identical to yours accept she was tube fed) i honestly think it would be in your best interest to get professional help from the psych liasion team for both jess and yourself, to try and overcome the food aversion issues. Being tube fed didn't make it the difference either, infact, being tube fed just meant it was easier to fill her up with milk overnight and lessen the need to eat during the day.

i hope hearing a success story is of some help, and i hope i haven't come across as harsh. and i'm sorry too, if its something you are already doing but i didn't get that from reading your posts?? Good luck with Jess.

Thanks gals. You're comments and thoughts have helped me to clarify what's going on, what I'm concerned about, and where I want to go next.

I'm pretty relaxed (now, though not earlier) about Jess's eating habits, and there aren't any psychological food aversion issues with her eating any more (not like there were still a year ago!). She is totally happy eating when she wants to and feels fine, or not when she feels crap. On a good day (once or twice a month) she'll happily eat a couple of bowls of pasta and half a packet of rice crackers. However, most days her throat is simply to sore to swallow anything other than liquids or ice blocks. Textures and stuff are absolutely fine, and she's finally learnt to chew, so the major stumbling block (as I've been able to clarify in my own mind) is the pain from constant oesphagitis means that she simply doesn't want to eat most of the time as her throat is too sore to swallow. (The constant red throats, ice blocks, and now that she's got better language she can tell me more finally! confirm this.)

Her reflux is not controlled, and hasn't been for a long time (she's had constant red throats for over 18months now, and gp's checked for strep throat etc etc). So until we get some kind of control on this we simply can't expect to make any progress with her eating. That said, once we get the reflux under control, given how she WANTS to eat everything we do, and willingly tries new foods, getting her to eat won't be a problem. But until the pain subsides there is no point in trying to move on this.

Virtually all of her behaviour, lethargy, etc is due to this reflux pain. And given that at age 3.5 even jumping up and down for a couple of minutes causes a major flare up, there is obviously something not working properly that she is constantly regurgitating the acid - whether the oesphageal motility issue is still there and adding to the reflux I don't know, but I am comfortable now that we do need to get more testing done, and that I can't sit around waiting any more. If it all spontaneously resolves that would be simply fabulous, but the chances are pretty slim from what the gastro guys said last visit (less than 5% I think?).

So next step is more tests, and I'm going to see a different gastro-paed, one I feel more comfortable with, and see what turns up. But I am feeling that we may well be heading towards surgery to try and stop the constant regurgitation.

But we're seeing a Paediatrician this Friday, so I'll be able to talk this all through and see if my thinking makes any kind of sense, and what his thoughts are.

Eleanor - thank you so much for your thoughts, they really resonate for me with Jess. With the surgery, what kind of recovery time did your boys need? I know surgery isn't a complete "fix" and there are definitely risks involved etc. Do your boys still regurgitate acid at all? Does the surgery mean that it's harder to do, so it happens less often, or has it stopped it altogether? If any of the boys had their wraps come undone, given the level of adhesions and scarring that was there the first time around, would you still get it redone?

We've just today been reducing Jess's bottles so that she drinks a smaller total volume per bottle. So we'll see what happens next as to whether she eats any more or not (but given that swallowing hurts .....) but hopefully reducing the volume of liquid this will ease some pressure so her stomach is quite as full.

lelo - yes the food reactions are so severe they aren't worth trialling longer. We've tried it, again and again, but she gets horrific diahhroa, stomach cramps, and doesn't sleep due to the pain for more than 20 minutes at a time, even when exhausted. Her reflux flares up majorly and she stops eating and drinking completely. Takes about a week to recover.

HK - we're constanly doing food trials, giving her a week or two between trials or illnesses so that her stomach has time to recover, and we see Rohan every 2 months. He's told us a couple of times to stop trials for a month to see if more recovery time would help, but it doesn't. Her tolerance levels just steadily increase with every exposure to food, until it's simply not possible to keep going anymore. We had to stop gluten about a month ago, and we've also tried egg, fish and a few other things in the last few months which have all turned to custard. Some immediately, or like gluten turned to custard a week or two afterwards and got progressively worse. With the food intolerances we totally follow what Rohan suggests and interestingly enough, he is totally happy with Jessica being totally on Neocate, just to give her tummy more time to come right. Of course, he isn't looking at it from a reflux point of view, just a allergy/intolerance point of view.

But a big thanks to you all gals, as always you help me to clarify in my own mind what I'm struggling with and what to do next.

Would it be worth also seeing an ENT about the red throats?? We have seen improvement since tonsils and adnoids have been out... not perfect by any means but eating has improved

So does she eat any veges, any meat on a good day? You've only mentioned carbs. What foods can she eat that you know don't cause the reactions?

Eating is a normal part of life and even if she is sore, she needs to eat a little bit at least three times a day. I really think the mainly liquid diet and carbs, will increase her GORD and make her throat sorer.

GORD treatment needs to extend beyond medications and surgery.

Good luck with your paediatrician vist.

dolphin, from what you have said, jess's issues around reflux and intolerances to pretty much everything she is ever exposed too, must mean she is in such a small minority of cases in nz. like percentage wise, she must be in the worst 1% of all cases the dr's have come across yes? Certainly the child i look after was (quoted as being one of the most severe cases of reflux and feeding issues seen in starship) and she didn't have all the intolerances that Jess seems to have. So why on earth haven't they been more aggressive with diagnosis and treatment plans. She had a tube in before she turned one, had 2 nissans performed before she turned one and was under constant supervision by every team in the hospital. Perhaps seeing a new dr is what you need.

And i know this isn't what you are thinking, but honestly, your thoughts on Jess's non aversion to food, mirrored exactly what the parents of the kid i looked after thought. everything else was to blame EXCEPT psychological issues, and they were very very convinced of that. it took an outsider, with a degree of removal from the child (so not an actual parent) to see the reality of the situation and force a change in thinking. and it worked, beautifully. So, regardless of whether or not it really is an issue in your situation, surely if you are as desperate as you are say then including psych liasion input for both you AND jess, would be an option you would be open to pursue just incase they have something useful to add to your situation. certainly if it was me, i would be open to everything and would be actively pursuing getting ALL the assistance i could, including psychological.

good luck

Hi
My kids have reflux and have had food aversions also.
I highly recommend the book "just take another Bite" by Lori Ernsperger and Tania Stegen-Hanson, which was loaned to me by our special needs advisor. Its wonderful, simple, great explainations basically about how to go right back to the beginning in getting your child to eat and enjoy food. Lots of food games also. Even if she cant eat the food, she can play with it, help cook ect and normalise the process. I kind of get the feeling (sorry-hope this doesnt offend you) that you want a 'total' answer, but most often the reality is lots of hard work by the parents and slowly, slowly, little by little increasing food tolerences with eating.
From a medical perspective, I think her lethergy is most likley related to lack of solid food intake. I cant think of any medical process that would make reflux responsible totally for tiredness (other than keeping a kid awake at night!)
I also wanted to agree with roz about the fluids. My kids at 7, still reguritate most fluids but solids are so much better. The simply are thicker so stay down better.
Also perhaps after eating, she could be asked to lay still or sit still for 30 mins while her tummy has a chance to digest her food (pop on a dvd for example).
You can also teach her to take a sip or two of water when she refluxes. This washes the acid back down & prevents that sore throat. My kids find this effective.
While you are waiting to see another gastro spec, what about getting a dietician and speech therapist on board because from experience, they are SO important.
Good luck!

Liz, I am so glad you are getting a second opinion. It seems like the gastro paed has been faffing about for ages telling you to ride it out and that things will get better.
Well obviously they have for Claire, but not for Jess.

Psychological issues are hard, they sneak up on you and suddenly you turn around and think hey how did I get here?

It's scarey to think that your child is different, and wonder if they will ever do what normal kids take for granted. (like eat!)

I really hope Friday goes well.

I would also be looking at a SLT. They are fab. I am actually suprised that no one has referred you on yet! Jess is a prime candidate.
You certainly need more back up than you are presently getting.

Big hugs lovely lady!

With the surgery - N was in on a Tues, had the op in the afternoon and out on the Thurs about lunch time. T was about the same, W wound up in hospital for an extra night so in on a Tues and home on the Friday morning.

Thomas' recovery time was quite different with the gastrostomy tube as well but you can check out that process on the Hugs For Thomas thread about 5-8 pages back. Nicholas was off school for way longer than the surgeon recommended but that was largely because of the need for a pureed diet for 6 weeks and the school's total refusal to allow him to refrigerate smoothies. It was summer and I wasn't having him get a tummy bug through spoilt milk products. So he went back to school after around 7-8 weeks. The weight loss he had also meant that I was trying to feed him 6-8 times a day anyway so home was easiest.
W was the beginning of Dec and he was in the Sunday School production a couple of weeks later. Of course being homeschooled he had virtually no time off school. He was seen by the surgeon around 4 weeks post op and cleared to do anything he wanted like jump on the tramp etc after that so long as he stopped if anything hurt.

The surgeon has said to the kids and us that the surgery doesn't totally stop the reflux - everyone refluxes a little and that's normal but it stops the constant acid bath they were getting. They will occasionally comment they can taste something but generally that's just after they've eaten something and then burp or whatever. My guess at that point is it hasn't got beyond the wrap fully and so the air has pushed it back up.

Thomas caused a little panic on my part a few months back when he was complaining of puky burps but he also had a cold at the time and when I chatted to the surgeon about it (he comes to our church as well and T had bowled up and told him he was doing puky burps so he was concerned!) we both agreed that colds may increase it a little and so long as it was isolated events that was normal.

Every surgeon does things slightly differently and our one def needs the purees for the 6 weeks - even scrambled eggs got stuck on the way down 2 1/2 weeks post op. Our guy says kids learn to vomit past it in about 6 months but while N can now burp again (nearly 3 years post op) and vomit maybe a mouthful, T can't seem to burp at all or vomit - although when he's uncomfortable we do vent him through the tube so he's had no reason to re-learn, 16 months post op. W can burp I think but def not vomit at all and he's 6 months post op now.

As for re-dos etc - again every surgeon is different but I've quizzed our one extensively - unsurprisingly. He says in his experience may be 2-3 % need re-dos and they are the kids with multiple issues, malformations inside, those with CP etc. Supposedly normal kids, like my guys, it should be all they need.

I asked about the life of the repair - they say it's a life-time fix, but so is a hip replacement etc and they last about 25 yrs. When you are dealing with a 4 yr old that'd mean 30's...
I told him I couldn't find any data on the life of a wrap etc but that there was a little uncertainty in the studies.

He has said that there's no record of them 'wearing out' as such. They've been doing them for around 30-40 yrs on kids apparently and he said there hasn't been a rush of adult gastros ringing and asking how they did paed fundos 30 yrs ago because they have to re-do them and if that was happening the paed surgeons would know about it.
His advice was, was the kids get older and approach their late 20's to just keep an eye on any studies and data as we learn all the time but that it should be fine - although if symptoms return don't assume it will be fine but get it checked!

As for a re-do if it came undone - YES! I'd absolutely re-do it.
The internal damage for all three put them at very high risk of oesophageal cancer in middle age. That has a 5 yr survival rate of something horrible like 5% and at 8 yrs it's around 2%.
W was already showing minor cellular changes.

BUT - N was vomiting on a regular basis as well and a major quality of life issue.
T - was seriously FTT and in regular extreme pain, crying in his sleep etc. He was also anemic due to oesophageal bleeding and even high dioses of iron wasn't bringing his counts up to anything more than low normal.
W - was having cardiac issues due to vagus nerve irritation from the reflux, never mind he was bringing up blood with the reflux.

So they were having significant issues other than just reflux.

The surgery is simply a mechanical repair and sometimes reflux is more than a mechanical issue.
But when you have come to the end of the road medically, with life style changes etc and this kind of thing is still going on then something needs to happen.

As for the psych issues around food - I know just how horribly stressful eating issues are. We're working with a psych with Nicholas and one of the things I've gained is a feeling that at least we're working on it. With all of the kids we have always done our absolute utmost not to show our fears, concerns and frustrations. DH and I have long had a tag team approach - when you can see the other's struggling then you take over and the other goes to do a 'job' so again the kid doesn't know it's because they are about to send you mental with yet another rejected meal. But in some ways, with the psych working with N too it's like I'm not slamming my head against a wall on my own any more. They are trying too, they are working with me and everyone acknowledges it's hard. Just not being alone with it day in and day out with no break helps me.
But with N - we've managed the medical aspects - reflux is gone, meds have minimal appetite suppression etc so psych IS all we have to work with.

They did describe T as having some kind of food aversion before surgery. But everyone also agreed he had very good reasons for it. He was also interested in food, would happily sit at the table, would cook with me, it was just the actual eating that he'd suddenly chicken out at! At times he was so bad he'd take a sweet and then spit it out half chewed because things hurt. Someone said he was doing it for attention but when he did it with jelly beans at the GPs and did it quietly in the corner with no fuss or drama she agreed with us that it was def not an attentional thing.
Once T had recovered from his surgery his interest in trying food increased and his overall volumes are also increasing. He's a long way from a normal amount for his age but he's making steady and happy progress and no one's suggesting there are psych difficulties there - just slowly developing as he should - he's even been through a compacted 'fussy 2 yr old' type stage briefly since he's been eating more.

W def had a major aversion - aged 2 he'd run crying from the idea of food. We wound up with him pretty much completely on pediasure and because WE felt he was getting enough nutrition - happy, active, healthy, growing and gaining appropriately - we backed off all pressure to eat. If he wanted to then cool but it was bonus calories. He decided it was interesting, wanted to explore and try and it took about 2 yrs before he was eating enough we could stop the pediasure. I can see Thomas working through the same process. But for you to feel that's okay and safe then you need a safety net - in T's case it's the tube. But it does defuse all that worry and angst and makes the whole eating thing a total non-issue.
I can see N is different, the same approaches haven't worked with him and so his problem IS different.

dolphin, any further thoughts on the psych involement advice for yourself and jess?

what testing has Jess had done so far for her reflux and intolerances/allergies etc?

it might be useful for tomorrow, to go armed with some ideas for follow up testing but i'm not sure what she has had already?

Dolphin where are you????

Hope all ok :0

Sorry, just had a test to sort today, and Jess has been an absolulte mess for over a week now, sleeps with me and won't let me move till about mid-morning when losec has kicked in, etc etc. And I've needed a few days to get my head around all this and let it sink in - I've been burying my head in the sand for quite a while now but I can't do it anymore, for Jess's sake.

Seeing paed tomorrow for Jess, it's a new guy, so I will take her by herself, (as Claire is seeing someone else to get assessed for autism at the same time) and sit down and go right through her history, and talk about what we can to do about her reflux, and what we can do about her food and eating issues, also about her FTT. So I'm hoping/expecting that we'll start the ball rolling and get some tests organised, so that when we see the new gastro lady in a months time we'll be futher down the road to seeing what else is possible, and whether or not surgery is a viable/real option. And by taking just Jess we won't confuse the issue by talking about Claire as well, but just focus on her. In fact DH had a good idea the other day, that if the girls both need appointments with any of the same specialists anymore, that we do separate appointments on different days, so that we can just focus on one at a time, and make sure the specialists focus on THAT particular child.

lelo - We have thought about the tonsils etc, the GP has constantly checked her red throats, and her tonsils, and never found any issues with her tonsils at all, so certainly no call for a referral to an ENT - it's just her arches that are always red.

Roz - she'll occasionally eat a little lamb (a teaspoon or two a day maybe? some days nothing at all) and can't eat any fruit/veges as she reacts badly to them. Her current diet is rice crackers, rice pasta, lamb mince and neocate.

yodasmum - when our dietician (who specialises in allergy kids) went to a conference last year she took 4 case files with her to talk about with other experts - our girls were two of them. So yeah, pretty rare with so many intolerances. I think the mismatch in treatments has come from us going private, and not having any one person to coordinate it all and fill in the gaps. We've got a nanny for the girls during the day now (as I've just returned to fulltime study in March this year) and that has definitely helped with the normalising of food for both girls. My initial reaction is that no, there aren't any pysch issues with her eating, but a few days of thinking about it and trying not to be defensive (cause I've worked so darn hard) I think there may well be psych issues that will need to be addressed. Testing wise we've had RAST tests (just had another lot done last month) and patch testing - which have shown up a few, but most of the intolerances are all delayed gut reactions, which for many of the reflux kids don't show up on these tests. We see an immunologist, so there's not really anything else we can do for testing with her foods etc, as it's all just a matter of food trials, which we keep doing.

Karen - yup, she sits still for half an hour after a bottle, and we see a dietician (who interestingly has told us several times when I've asked that we don't need a SLT as Jess will put things in her mouth .... hmmmm, yet we still have issues with eating ....) As you can see I'm rethinking this opinion .... and yes, I would love a "total" solution, cause the last few years have been incrediably hard, but for the moment I just want to get her out of pain, cause we can't work on the food issues till the pain and reflux is improved. But some good ideas there about the food play, as soon as she's not reacting we'll start doing that. and yes, lethargy is the food intake issue ... sigh ...

Suomi - will catch up soon! And thanks for the message - I've made an appointment with the lady you suggested.

Eleanor - thank you sooooo much for the detail and time you've given me, I truly appreciate it.

So yeah, appointment tomorrow, I want some tests to look into whether she still has the oesphageal motility issue (so probably a barium swallow again ... sigh ...) and possibly a x-ray to look at the constipation, and a scope if necessary for the gastro-lady to look into whether surgery is a good option or not. Other than that, hopefully the paed will have some thoughts and ideas about eating, SLT, and more importantly, any other ideas to control the reflux that I'm not already doing.

Cant wait to hear all about your appointment Dolphin. Good Luck with finding a solution to getting her back on track and eating normally. I am curious who you are seeing.Is it a allergy or gastro pead.
As you know we have been through them all. I think we were onto our 5th allergy pead but our situation is slightly different nobody understood EE back in the early days.
Has she had a ph probe maybe that would be a option to.
That may guage the amount of reluxing taking place
What came of the conference with the dietician doing a case file... did the other peads have any suggestions

In regards to the fruits and veges she reacts to saliyates right can she not have the low to moderate on the list??
Just wondering what your mealtime routine like, do they sit at the table do you eat as a family.

Good luck today Liz.

I can't wait to hear how you go.
Are you seeign the new lady today, or is that later?

HK- my SIL was givent he name of a new gastro paed in Auckland (to deal with my neices Coeliacs). She has just moved here and set up a practice. Our GP has had dealing with her and said she was great.
I'm interested to see what she is like.......seeing as we may need her in the near future (head in sand).
It's always nice to know of another option for that second/third/fourth opinion.

Just as a side not, my little refluxer turns 4 tomorrow! Where did that time go? God, this time 4 years ago I didn't even know what reflux was!

Best of luck for the appt today!

good luck today then dolphin. its a shame hubby can't go with you, can be good having someone else helping with the history and taking it all in.

I would suggest the ph probe to, and barium swallow. but then i doubt very much they would do surgery without doing all that anyway. i'm guessing she has had all the testing for reflux already yeah?

good luck

Hi Dolphin,

I have been reading this thread with interest. My Braden sounds very similar to your Jess, but not as severe. He starts school in five weeks. I have hit a bit of a brick wall at the moment with his reflux, allergies, etc. And reading this thread has given me some ideas to discuss at our appointments next week (paed appt and gastro specialist appt).

I just wanted to say good luck for your appointment today. I am looking forward to hearing how it all goes.

YM - Just an off the cuff kind of thing - depends on the history and the requirements of the surgeon as to what testing they do prior to surgery.

Nicholas had a barium study done prior to surgery but that was all. Just checking that it was all formed correctly inside.

Thomas had a gastroscope done with biopsies to rule out EE and then a pH probe prior to surgery but he'd had a barium study done at 3 months old so the surgeon simply reviewed those.

With William he did a gastroscope and biopsies just to be sure and reviewed the old barium pictures which had been done over 5 yrs ago.

The barium will rarely show actual reflux so it's really only to give them an idea of the structures in there.

The pH probe has a fairly high false neg and esp in kids who are largely formula fed as the formula/BM is alkaline and has shown to have a coating effect for up to 30 mins each feed.
Thomas was apparently negative on his pH probe done at 3 months old - but they did acknowledge that it also wasn't done correctly.
His probe aged 3 1/2 came out with what they described as mild reflux - although the little booger pulled it out after only 15 hours and before his worst time of the night.

On the basis of the probe our surgeon said he wouldn't recommend surgery and we struggled on for another 6 months or so until going back.
The first thing the surgeon said post op for Thomas was "Boy he needed that!" He was actually ulcerated inside from the years of reflux.
After William's surgery and finding he was much worse than testing had led him to believe he said it goes to show how crude the testing actually is.

So I wouldn't put all my faith in the testing after my experiences!

yep eleanor, i hear ya on the testing side of things. i've been there done that with not only the 2 kids i looked after, but also my own son who at his worst took less than 200mls of formula a day (4 months old). i guess if it was me facing surgery, i would rather it was all done anyway, just so i could say we had ticked every box possible before allowing an invasive procedure iykwim. then, i would weigh it all up with the big picture.

dolphin, i think it might be necessary for you to try and organise a phone conference between all your drs. do you think that might be possible? or at the very least, take all your notes with you today so the new dr can go through the previous dr(s) assessments etc.

Oh yeah understand that totally YM!
I guess the big diff with my guys is that they were also so much older - plenty of time to grow out of it, could tell us about how they and it felt etc.
We certainly sat, waited, tried everything with Thomas before pulling the big guns - which probably should have been done a year beforehand.
But I agree - it has to be last resort.

hi gals, your support is awesome, it really is.

Well had two good appointments today. Got one diagnosis, and a heap of tests. Claire had her appointment with a different specialist at the same time as Jess and has been officially diagnosed with Aspergers (sp??) so we're getting heaps of referrals to a number of people in different areas at starship to help us with this. The diagnosis was a relief for me, knowing that I wasn't trying to talk up the difficulties we've been having, and the knowledge that much of her behaviour has a REASON behind it, that it's not just normal preschooler/toddler stuff. Next step is looking to how we can best support her.

Anyway, that's the other child. Jess's appointment was WONDERFUL! It was with a new paed - not a specialist gastro or allergy paed, just a regular paediatrician, someone who can look at the big picture and coordinate everything a lot more. I just about burst into tears when I left, with the overwhelming feeling that someone was finally taking me seriously, and agreed that the time to sit around and wait is long gone!

We're just going to keep trucking on with things the way they are at the moment, just until we get more test results back and have a better idea of what is or isn't going on. He was very concerned at the low levels of food and formula intake she's on at the moment (YAHHHH!!!! Someone who thinks it isn't fine!!!) and his initial response is that it's nowhere near enough nutrients and she's very slight. We weighed her, and she's dropped 200grams this week, but at least she's grown in height in the last 6 months. She's now 103cm tall! SOOOOOO tall for her age, but very skinny at 13.5kg - but then she's heavier than Claire! He wants all the data I have of her weight tracking since birth, so that he can look at the graph in total and try to identify when things changed. He is quite concerned that her weight has dropped from being over the 50th percentile in her first year to under the 25th percentile now, especially as her height has remained between 75-90th percentiles. So at least she's still growing heightwise, but he's concerned with the weight.

He is quite happy with us having been thoughly assessed for allergies, and said that she obviously isn't having a antibody reaction, and is instead having a cellular reaction to foods, which are harder to diagnose. But that said, he actually wants to DIAGNOSE jess, and together with the new gastro-paed we'll see in a month (she works in the same clinic) he's confident that they are actually going to figure out what is going on with her! I've been waiting for this for some time, and our previous gastro-paed just isn't up to scratch i'm afraid.

He wants to leave her alone for the short term, so that we can get a barium study done, a specialist poo sample test thingy (to look at whether she has specific sensitivies like inflamatory bowel disease etc - it's quite a sensitive test aparently), and then with these results get another scope done. He wants to check that
1) she is still refluxing
2) does she still have a motility problem, and does it happen further down in her gut too
3) is there anything else going on with the constipation etc, that needs addressing.

Then just before the scope, he wants her back on foods for about a week, and off losec for a couple of days, to confirm the severity of the reflux, and to look exactly at what is happening in different areas of her guts and compare this to last time. The previous scope was 2 years ago, so we need to have another look, but also it didn't fully cover the whole gut, and he wants a complete look this time. Hopefully as she'll actually eat before this scope (unlike last one) we should be able to see what effect the food is having.

He wants also to run some other blood tests, to check her kidneys, iron levels etc. So I'm heading back to the gp on monday to see exactly what results have been done recently (so we don't need to redo them). But he's thinking big picture, and wants to check her other organs to make sure its not a problem with kidney reflux, or anything else like Crohn's etc.

Jess hadn't eaten anything yet today by the time we saw him at 11:30am, and when he checked her tummy and pressed hard she had no response except to laugh as it tickled. So he's wondering whether it is still a reflux problem as he would expect given her behaviour (not eating, VERY pale - in fact that was the first thing he remarked on when we entered the room, etc) that if she's in pain from the reflux that it should be tender. It could be that she has a high pain tolerance and an empty stomach meant that it isn't tender at the moment, but given that something is flared up at the moment he would expect tenderness. With her on a high dose of losec, and symptoms still not controlled, he is quite seriously wondering if something else (for example motility issues through her whole gut) are the root of the problem now. He is quite convinced that something is seriously not right with her guts, but he is also very determined to actually run some tests and WORK TOGETHER with other doctors to get to the bottom of it! Such a huge difference to our previous specialist experiences .....

So I'm elated to have such a fab paed on board (and Jess loved him, he is great with kids!) coordinating and on the same page as me, knowing that at least with one doctor I don't have to feel like it's all about me as a mum doing it wrong or imagining things.

So going to take a couple of days now to let the dust settle, get onto the testing next week, and start finding more info on how best to help both girls.

Awesome Dolphin, sounds like a really positive appointment and progress will be made. It must be a huge relief to you.

Wonderful news!
Such a relief!

Dolphin, great news!!!

I'm interested in who the paed, my best mate is looking for a good paed for her dd who has a variety of issues and he sounds fantastic. Is it possible for you to pm me his name.

Great news!

hey dolphin, any update on Jess? have you got any results yet? hope things are moving along for you.

had the barium done the other day, and have now ruled out hernia, strictures etc. And best of all, NO more motility issues!! Which is awesome cause that's a contra-indicator for surgery!!

Seeing paed tomorrow so will get the full report and results of other tests then.

Got two girls on AB's for chest infection/cough at the moment, so we're battling that and trying to ignore the weight loss .... at least Jess is staying hydrated ....

Next step is to book the scope and decide which areas to biopsy. Also need to talk to paed about checking whats going on in her bottom, with the constipation, to rule out a couple of other things.

Had an awesome letter from him the other day, 3 pages!! Most comprehensive letter i've ever had. Awesome!

I'll post some more tomorrow if I get the chance.

Yay Dolphin! Great news!

Thats great news about her mobility issues and great to no hernia. When do you think that they will get there gastroscopy's. I guess they will do the "full works" in the biopsy dept so hopefully they can pin point what is wrong.

Hiya. Just got on the computer finally! Girls all tucked up in my bed, completely knackered. AB's kicking in, but wearing them out!

Paed was good. Didn't have all the test results back (poo test had to go down to Christchurch) so couldn't rule out crohns etc yet, but barium results ruled out structual issues. He's been doing heaps of research to try and figure out what's going on! jess is a "challenging" case. hehehehehehe! Like I didn't know that already!

One issue that's just come to light recently (like a few days ago) is the whole turning pale when on the merry go round and repeated goes on the slide. So one thing he's considering is an inner ear issue like severe motion sickness that repeatedly causes vomitting. So we've got a patch to stick behind her ear and once she's over this bug we'll take her out to a playground with merry go rounds etc, and test if she still goes pale (like sheet white) with this patch on. We're really really hoping that this provides some answers for us! But we're going to need to follow this up with a tilt-table or MRI to confirm that she vomits when moved.

Given this, some of her recent food trials that appeared to work for quite a while before going pear shaped, we suspect that she might actually be ok on some of these foods again, and that the reactions are getting confounded by random movements/playground visits/aeroplane rides from grandpas etc. So we're on a mission to liberalise her diet!! She ate a heap of bread on the way home, and more later too. So gluten is back on the menu as of now, and we'll give it a few days to see how it goes, and then try something else.

Paed's going to find out more about testing and also sort out some special metabolic tests that we'll probably need to do at starship (just cause they're finiky and need the right equipment etc) to do some screening for metabolic disorders like issues with proteins, fructose, etc, and also check on her kidney function etc at the same time (try to get all the blood collected in one test, whew!)

Definitely getting to the hard to figure out stage, so just taking things one step at a time at the moment - firstly test out this motion sickness thing ....

HMMM thats interesting Dolphin hope its as simple as that!!
Good Luck with the food trails.Sounds like you are getting lots more tests with is good.

Hmmm Dolphin - do you remember the weird cardiac things W had going on? The cardiologist said he couldn't provoke it, and it wasn't structural but something was wrong.

Totally disappeared after his fundo surgery. It seems that the reflux washing up and down was irritating the vagus nerve causing his heart to race, him to feel sick and occasionally vomit and go really white, blurred vision, dizziness etc.
Might be worth chucking into the melting pot too. They docs always said they thought W's apnoeas were due to reflux and vagus nerve irritation as well.

Snap Eleanor - I wondered exactly the same thing in the middle of the night. I've just emailed the Paed and asked what he thinks about the idea that the vagus nerve is being irritated by the reflux and causing the pallor and vomitting, so hopefully he'll get back to me this week. I'd noticed a few weeks ago too that she seems to be having more of the signs that she used to get when she had apnoeas when she was little, like turning blue around her mouth, lips and surrounding area for about an hour or so after a bottle. So that would all tie in with an increase in physical movement (slides, tramps, travelling in the car, etc) lately, and a decrease in her bottles, and an increase in pallor, regurgitating, etc that we've noted over the last few months. Would make sense if the nerve was getting increasingly irritated that the symptoms would be getting more apparent and frequent. hmmmmmm .....

The only thing that the Paed isn't sure about (and I'll talk with the gastro-paed late next week) is whether they would be prepared to talk about surgery or not. With all the hard yards we've put in with the food issues, we've managed to "control" her weight gain/losses to only dropping from the 50th percentile to 25th percentile. He's not sure if this is "sufficient" for them to want to go ahead with surgery, cause it appears that they tend to only want to do surgery if there are structural issues likes hernias or if kids need feeding tubes due to having cerebal palsey etc. So I'm a little unsure what else to do if this is the case ....

If it turns out like I suspect that she can't play on swings, slides etc without flaring up her reflux, but we can't get surgery to help her, and more meds aren't going to stop the acid washing back up her throat, I really don't know what I can do. The thought of having to stop my child from doing any kind of moving activities and just keep riding this out, is pretty hard to comprehend at the moment.

I'm quite happy with the making progress with foods stuffs, but this reflux is getting me quite down and frustrated at the moment. I think I just needed to vent and clear my head with all this .... maybe it's time to accept that this is her lot in life? And that we're going to keep playing the waiting game some more ....

as you said kells - both the gastro-paeds we've seen or are seeing work together at starship and probably have the same approach and ideas about reflux and treatment. So maybe that's just the way its going to be.

Dolphin, at Jessica's age Gem still had major problems with reflux with drinks. She had to have Gaviscon in every drink and that included water, as she would choke when drinking it otherwise. Putting Gaviscon in it, helped with that. I know you use Gaviscon and that that then causes constipation issues but wanted to reassure you that as long as we were able to manage reflux very well with medications and diet until Gem was about six years. It was only at that time, that we considered surgery and the paediatrician who was anti-surgery decided that this was our only option. It was him that suggested it first to us rather than us, but we knew there were no more options as everything had been tried.

Now after two surgeries Gem is refluxing again and the extent has only become apparent in the last two weeks. She is not able to vomit properly still although is able to belch bile. Sorry hard to explain but that is what is happening. We tried stopping Motilium and her reflux increased so much that within 24 hours she was needing Difflam spray to numb her throat. Back on Motilium. Phew! She is needing extra calories because she is burning up so much energy with the pain of her current illness, so is drinking Neocate Advanced or Elemental 028, both of which she hates with a passion. She doesn't just hate them because of the taste but because she refluxes so much more with the fluid volume so we are adding Gaviscon to this which helps a little but the biggest help is really time since the last drink and solid food in her tummy.

So keep on getting the solids into Jessica and I'm sure the GORD and all the symptoms that might/do go with it, will start to decrease. The more solids she gets in, the more she is going to grow, so the more she is going to be able to tolerate food. The more solids she gets in, the more her body is going to get used to digesting them. The more solids, the more energy she is going to have to cope. I know it is hard. I was in tears yesterday too but you just have to do what is best for your child and if they won't consider surgery now, one of the reasons other than the reasons you have been told is possibly that Jessica needs to eat. If her GORD is still such a significant difficulty with food and another year has passed, maybe they might consider surgery again. I guess what I am saying, is you have to be completely compliant even if it is hard at the time.

I'm sorry I sound like a broken record. :-) Remember you still have other test results you are waiting on so there may be some other treatment they can offer but whatever the treatment is, Jessica is going to need to eat and this will help decrease her reflux. Surgery does not stop reflux and if her diet is mainly fluid, she may still reflux a lot.

Big hugs

dolphin, if jess is sitting on the 25th percentile when she has essentially been eating nothing (well except milk and a few rice crackers) then imagine what she might do now that she is allowed to eat.
i wouldn't be pinning your hopes on an invasive procedure, i would be celebrating the fact she can now eat food (clearly she can eat if she happily ate the 2 helpings of bread and you said you are liberising her diet now yeah?), try and reduce the milk intake, and you might just find that the reflux settles with the increase in solid intake and that actually she CAN live a normal life for a change.
I know that may sound like its minimising everything you have been going through (i'm not, just trying to look forward not back), but in reading all your posts, it does actually make sense from a medical perspective. and putting her through surgery doesn't really make sense if she has managed to maintain her weight ok, now that she is being allowed to eat more.
I would also be pushing for pysch involvement. to help her (and you) overcome the fear of eating that she may have developed over the years. because if you are introducing new foods (obviously at the new peads advice and he clearly thinks she can tolerate them if he advised it yeah?) then you really want to make sure that you put everything you possibly can into making sure eting becomes a normalised function.
essentially, if it was me, i would be putting all my thoughts and energy into increasing her diet now that you have been given the go ahead to try new foods in her diet. in the hope that the increase in solid intake will reduce the reflux. which in turn will put an end to any of these ??pallor events that maybe occuring due to the reflux. and so on. Then, IF everything is still an issues in say 6 months time (so giving it a really good shot) you can look at getting more aggessive. BUT, you will be doing so in the knowledge that both you and jess, have given it your best shot and done so with the attitude that she can and will eat instead of the attitude that she can't tolerate and won't eat iykwim.

oh cross posting roz. but essentially, what you said!

I think you said it well yodasmum!

Just with the mention of the psych involvement, I don't know if I have mentioned that at 3 years I was almost going to ask for psychological involvement for the tantrums that we had with pain. I didn't know what to do.

With Gem's current illness we now have a psychologist involved. It is nice to be told that we are doing things right if nothing else, and that we probably handled the earlier tantrums okay.

oh absolutley roz, psych involvement is a totally positive experience which involves encouragement and game planning (help with how to approach new situations) so there is no need to resist it for fear of negative connotations.
And sometimes just a minor attitude shift (say for example: Jess CAN eat as opposed to Jess CAN'T eat cos she is intolerant to everything) can make such a HUGEEEEE impact on how you as parents approach getting Jess to eat and how Jess would react to the changes you make in approaching eating with her. Alone, those kind of attitudes can be very very difficult to shift, through fear of the possible consequences (of her eating), but with support and understanding and planning, it will make it so much easier for you all.

just as an aside, my 2 year old has developed reflux as a toddler (we think due to her chronic constipation) and she is definately, without a doubt, worse after she has had a bottle of milk. she lies there (or sits there) refluxing away for ages and ages. problem is its the only way we can currently get movicol into her.

Oh yes, Movicol is one of Gem's favourite things, not! A straw makes it better apparently!

YM - did you end up having the coeliacs test?
I was chronically constipated before I was diagnosed and had terrible reflux.
It was so not fun!
Like my whole digestive system was screaming out.

not yet suomi but plan too. she see's the pead soon.

Good luck with that.

Thanks gals. Given how sick Jess is at the moment with a chest infection (she's on AB's) and hasn't had a bottle now for about 4 days, and barely touched it for about 5 days before that, so I'm contemplating just hanging right back on the bottles completely (as she's already doing) once she comes right and seeing we're suffering now as bad as it gets, I might just do a complete transition to solid foods, ride out the reactions (but there's some foods I'm not touching yet! Like dairy!) if there are going to be any. As she gets better she be slowly increasing her total volume anyway. She's been eating bread/toast now for 3 days with no problems so I'm really really pleased with that.

I guess I've needed to go through this to come to the realisation that there is no "fix" for her reflux. That even surgery (though still a possibility) is not going to "fix" it either. The new ideas and thoughts from the new paed are a great help, and I am certainly going to go part way down this road, but as he and I both said, it's like looking for a needle in a haystack, and we might never find the answer, and some tests may not be worth doing due to the harshness of the tests. So we'll do some broad spectrum screening for metabolic disorders and test out the inner ear/motion sickness theory, and then we might just leave things alone for now and see how much improvements we can make with a solid food diet, and talk to the new gastro-paed about what we can do to minimise the flare ups when they occur (as in is she old enough to take mylanta or anything similiar).

Your thoughts gals are truly appreciated. I'm going to take a day or so to process things, get the girls back on their feet, and then get on with accepting the reality and loving my little girls a little bit more.

Hi Dolphin

I wouldn't give the Neocate Advanced away entirely - but it should only be given after a meal of solid food - and probably not from a bottle. Whilst she learns to eat, it has important nutrients especially if she isn't have any other form of milk.

We are still waiting on test results for Gem and are sort of on the last thing we had to try to improve her symptoms of whatever has been causing her severe pain for the last seven to eight weeks. Her three specialists and ourselves agree that there is to be no more testing unless things change because we are unlikely to gain anything from these and they will do more harm. We are told to expect her to be like this for three months to a year. Amazingly children adapt to severe symptoms and cope far better than most adults would. Gem is seeing the psychologist for coping skills.

We do have several medications we can use to help minimise things but Gem really does only have these for flare-ups now. Mylanta can be used from a young age I believe and we have useful since Gem's surgeries.

I didn't want to put you off surgery, just reassure you that life can still improve without it. I still don't know if it was the wrong choice for Gem. Maybe things would be much worse now without it?? Without knowing the cause its impossible to tell.

So glad to read that the girls are tolerating solids so well must be a pleasure to see and give you some hope. I also agree going from limited solids to solids again I would still recommend the Neocate Advance after meals as a top up and given they are not on dairy also. DS is still on Neocate Advance for that very reason abit only one glass at breakfast.
Are they going to give them a PH test Dolphin??
Whens your gastroscopy. I would be giving them a really varied diet prior to really rule out EE.I know that in the past you have doubted there food intake prior to a scope and always in the back of your mind wondered about EE as they have never been on a full diet.This would be the perfect test.
With the motion sickness are you saying the vomitting would be causing nausia therfore making them not want to eat?Sorry just wondering wouldnt the motion sickness be a intermitant thing when on slides or swings not a continuious everyday feeling therefore I am thinking the lack of eating is more learnt behaviour??

HK - no plans to PH test them (though the paed said something about checking her ph when we do blood tests at starship .. not sure what that's about)

motion sickness causes people to feel nausea and vomit and turn pale once they have had particular kinds of motions (some people can't handle boats for example, others can't even tolerate driving). So the motion causes the vomitting, and nausea, so she doesn't want to eat or drink her milk for the rest of the day. It can take hours to settle down. I know when I get sea sick I feel awful for quite a few hours after.

But yes, lack of eating is a learnt behaviour, and mostly due to the pain of having constant oesphagitis and therefore swallowing hurts. defintiely work to be done ....

I'm not sure why he would be testing the Ph of the blood either. It is done with some children receiving specific therapies but not usually GORD therapies that I know of but I don't think it has anything to do with her stomach.

Gem had motion sickness to the extreme with her GORD at age three to five years. She had some fainting episodes which were tracked down to Prepulsid so had to come off that, and then would vomit a minute down the road which was so much fun - not. We used the motion sickness wrist bands with success. Something easy to try Dolphin. Sorry I had forgotten about them. Buy them from the pharmacy - like a wide hairband with a plastic dot in them which you put on the pressure point of the wrist. Instructions come with them.

hmmmm, can't see any reason for checking the blood ph either. but good to know they don't need ph testing huh.

Heck yeah because that is one PITA of a test! And not all that reliable to boot.

How is it going Dolphin?

Hi

Many moons since I used to visit here. I have since re-joined but have no previous account for you to refer to.

Just to put you at ease of the FOOD thing.

My DD (5 in September) had chronic reflux as a baby/toddler. Losec, Bar swallows, under Starship. OK (she is now almost 5) for the last 4 years she has eaten NOTHING other than peanut butter on white bread. SHe has NEVER eaten meat (except when she was eating jars at, say 7 months) she has NEVER eaten a lolly, NEVER eaten veges (again, since she was on jar food). She lives on Peanut butter and bread (sometimes she goes off bread and just eats peanut butter out of the jar). She has been under SS care all her life. We have seen the Child Psych team (Linda Chard...can I say a name, she is with SS so not private). They do food play. We had had the SLT (as she gags on food at times), we have had the OT around home every week for 6 weeks, we have the dietician. We have had another Bar Swallow at age 3.5 years, we had a gastroscopy toward the end of last year.or was it beginning of this year?LOL.

ANYHOO....there is nothing 'wrong' with the child. The Bar Swallow showed to be slow BUT this was due to stress (she hated it...refused the milk so had to have NG) Poor thing!! She has been on pedisure for a year or so and as she is losing weight (lighter than she was Oct 09)..they have increased it. SHe is at preschool at the mo and takes white bread in her lunch box. No peanut butter allowed, damn it!

SO....even though she does not eat and we have explored all avenues we have just accepted it. She will grow out of it. Currently she is food phobic (seriously). It has been a long road and we have put a lot in to it but looking back (and I am saying this whilst she still lives on peanut butter) I really wanted to find a REASON. *I* NEEDED to know what IT was. I guess it is all linked to an anxiety issue that surrounds food. I often wonder whether my pushing food and trying (all with best intentions) made it worse and it probably did. It made food time a negative thing. Sometimes you can;t have a reason as to why...you just have to plod on.

People may frown at this, let them, but my DD still has a bottle. She refuses to have the pedisure out of a cup so in the bottle it goes.lol. Even that behaviour of having things 'just so' is probably a pointer to her being a quirky/anxious child.

I hope I have not gone too far off the mark. Just thought I would reassure you on the food thing.

Oh and her latest bloods (routine) were perfect!!!!

Hi QEII

Thanks for sharing. So the main form of therapy for your daughter is the Child Psych Team and nutritional support in the form of Pedisure?
You say she was eating jars at 7 months. Did the eating issues begin after that?

Its reassuring to know nothing is wrong but also very hard work because that is all you have left - hard work. Dolphin's daughter is eating again but it still sounds like it is hard work.

I think whilst not making food a battle, that it is also really important to make food normal. Having meals together. Having the same foods on their plates as yours - or as near as possible. We have multiple allergies here and actually eat the same 99% of the time and still have a varied diet. And then there is letting the child know who is boss - you as the parent. Maybe not just in the area of food - but in other areas as well. As in "It is winter, you need to wear a coat when you go out outside. Do you want to wear the red or green one?" Our paed. also got us at preschool age to let out daughter have 20-30 minutes to eat, then take the food away and make her wait until the next mealtime/snacktime. It helped improve what she did eat and helped improve her GORD because she wasn't constantly grazing and digesting, and actually got hungry. Seems so simple now but wasn't at the time. I'm not a psych though and you should always follow your health professional's advice.

Food is such a difficult area because our babies with GORD do have a higher incidence of allergies and intolerances, and regardless of that they can learn that food hurts or food makes it better. It seems to be crucial to do the stages of food at the right ages regardless but I remember how stressed it made me.

QEII,
I just wonder if you've read the full thread.

Dolphin's daughter is clearly different to yours as active reflux has been diagnosed which requires management.

A liquid diet is much easier to reflux than one mixed with solid food and so while your child may manage on minimal solids Dolphin's daughter has this as an added issue.

Your daughter's bloods were probably fine due to the pediasure which is a total nutrition formula - rather than because she can survive perfectly on just white bread and PB.
I'd hazard a guess that your daughter's declining weight is an indicator that she's not really holding her own on her 'diet'.
Declining weight can affect a number of developmental areas for a small child so I personally would find that cause for concern - as Dolphin does with her daughter.

Food issues are a hugely complicated, difficult, stressful and messy area which can take literally years to sort out. I'm glad for you that you have found your peace with where your daughter is at - but for most people food aversions are not something they just 'grow out of' but require time-consuming, painstaking work on the part of therapists and parents. It may seem like no one's doing anything but baby steps forward need to be taken all the time.

Patient, slow, reassuring that food is okay, fun and safe is how we got our now 12 yr old but then 2 year old, food aversive, totally pediasure dependent child to where he is now.

Our youngest is tube fed and until recently I'd have said he was making good and steady progress and probably down to half and half tube and orally fed. He's run into mechanical problems and at this point, yes,you are right. We'll take whatever food we can get into him however he'll take it. I know we're going to have a long road back but pushing when he's clearly in pain WILL set up psych issues later so we'll just have to go from where ever we are once this is sorted out. Just by the by Thomas still uses a bottle aged over 5. Delivery method is not so important as what's being delivered - with you on that one!

However the same slowly, patiently, gentle momentum forward approach has NOT worked for our middle son who is currently FTT, not gained or grown in about 9 months and is dependent on a high cal formula - and is getting psych input on the food aversion, looking at changing the thinking around food behaviours.
So while reflux was the base cause of all my kids' eating difficulties they have responded and needed different help in different ways.

Best of luck with your daughter's progress towards a solid food diet!

Clearly, I have struck a nerve. I stated that I just wanted to give reassurance on the food front. However, I will respond (with a cup of tea at my side) to your post.

No, I said in my post I just wanted to reassure of the food front. I skimmed and felt that my experience may have been of some reassurance




My daughters bloods have always been fine...regardless of pedisure. She was given the pedisure purely to 'up' the calories to a more reasonable amount.



Despite my daughters decline in weight they (the Paeds etc) are quite happy with her progress. I guess everytime I see them they ask if she is happy in herself, social, keeping up with her peers. I do find my daughters weight loss a worry but I am happy with the increase in pedisure and I suppose I take comfort in that she is being monitored. At the time...we had FBC, clotting studies, B12, folate and iron.......all fine so that was reassuring.




You're telling me!!! Perhaps I did not express myself as well as I should've. When I say I accept that peanut butter and bread is it...I mean, I am reassured that she will live on it. It is very hard to accept especially with all the hours I have put in to making meals. To answer Roz, yes the Child Psych team do suggest family meals in a 'buffet style' and having a plate of food dished out for DD which she has next her plate of sandwiches. When I say 'grow out of' I reassure myself with the fact that when she is going out to dinner with friends/boyfriends (eek) in her late teens/early 20's she is not going to take her bottle (maybe bottle of wine) and peanut butter sandwiches with her.LOL

Roz - sorry, back to your question. It is hard to know when the food aversion happened. We guess it coincided with the removal of Losec at around 1. We started her on Losec again at 3y 11m as she started having tummy issues and was able to communicate. We currently use as and when needed. No intolerances or allergies.

I do understand how difficult it is to have a child with reflux, infact, I have reflux myself that comes and goes (for no apparent reason - like DD) and it is awful. I just thought that it might have been reassuring to know that others had the same food issues.

Well, that tea has gone cold but I deserve one after than effort!! I had to work out how to incorporate quotes in to my post.

lol queenie

reflux and food aversion are 2 seperate issues that can absolutely be intertwined of course (or not). doesn't mean one person's experience can't relate, just because the path may have been different iykwim. and the sharing of experience and gained knowledge just as valuable.

and seeing as jess is now eating heaps (from eating nothing but a few rice crackers and neocate only a matter of weeks ago) i'm assuming the reflux (or even the food intolerances) is not necessarily the biggest factor in their situation maybe? and correct me if i'm wrong, but aren't they now saying jess doesn't have reflux anymore but instead has some motion sickness thing causing the vomiting?

Thanks for your thoughts and experiences QEII. It is good to know that there are others around struggling with food issues.

Jess is doing really well on her foods, consuming heaps of carbs - loves her bread and crumpets, usually with either mayonaisse or margarine, so awesome that we're getting some fats into her! There's a lot of work ahead of us as protein is a big issue, as she barely eats any in a day, though have just discovered that she'll eat egg whites from boiled eggs, so she's had 2 eggs today!

Other food textures are going to a whole heap of work, and I haven't really started thinking about that - trying to deal with Claire's leg cast issues at the moment, so I'm burying my head in the sand a little. But she really only will eat crunchy food (toast, biscuits etc) though starting to do better with margarine etc. But yeah, I guess I'll start thinking about the rest of that soon and I think we'll go make some appointments with a SLT to get more ideas and help ....

Will chat with the paed tomorrow, so fingers crossed we have more results. Motion sickness is really a biggie as we discovered this afternoon in a long (45 minute) car ride, causing pallor and vomitting. We had issues with the fructose (we think that's the problem anyway) in the dairy free ice cream she was eating. So at least we're getting to the bottom of some of the issues, but it would be so nice to be able to feed her fruit or veges .....

You're very welcome and I am pleased it was of SOME help to YOU.

Good Luck on the food front and take comfort in the fact that these kids will not be taking their bread/mayonnaise/crunchy textures with them in to restaurants as young adults.

Hope Claire's leg is alright. Kids!!!

Hi QEII! Lovely to see you.
I had wondered how your little lady was getting on.

Food aversions are such a draining thing, that I think all experiences and opinions are valuable.
Just because it has worked for you, doesn't mean it is going to work for someone else, and vice versa.

No one person has all the answers.

And I think sometimes it is just nice to know that there is someone else out there going through a similar thing.
It can be so isolating on your own.

Dolphin was it you that metioned something about meat/protein?
I just thought I would say that up until recently Emily wouldn't eat any meat.
Maybe a bit of sausage or mince. But mostly she was a vegetarian......who didn't eat a lot of vegetables LOL.
Well blow me down in the last month, without any pressure from me she has started to eat the meat I dish her up. (I've always put it on her plate and left it up to her whether she ate it)
This week alone she's had bacon, roast chicken, chicken breast and ham steak.
Sometimes it just takes time.

And go the egg white! Neither of my kids really like the yolk. We have eggy dip dip......without the dipping bit!
But they will eat omlette. Have you tried that? Or scrambled egg.

Is your hubby still making the pate? Will Jess eat that? Protein plus you can put it on the crunchy crackers she likes. Is it reactions to fruit and veges that are the problems? Or is it that Jess won't eat them?

They might fulfill all nutritional requirements but both would make two of my three children really sick. I have to wonder if this diet isn't adding to your daughter's problems. I'm not being judgemental and I can't see a way out of the diet for now when this is all she will eat. Has she had testing for Coeliac Disease?

Hugs. It must be difficult for you. Thanks so much for sharing. Just remember that anything you are told by your health professionals is for your daughter, and not anyone else's.

Way to go suomi with the meat. It just shows that gentle perseverence pays off.
I should have read your post before posting "Just because it has worked for you, doesn't mean it is going to work for someone else, and vice versa." You said it so much better than me.

The Mayonaisse that Jess is having Dolphin - does it have egg in it? It was Eleanor who put us onto mayonaisse for Gem when she was losing weight a year ago. Gem has it in her mashed potatoes. She can't have tomato sauce at the moment and the osteopath suggested dipping chips into mayonaisse also - LOL we do that when we make aioli(?sp) out of it but hadn't thought of doing it with plain stuff.

Just got the test results from Jess today. Both relieved and devastated all at once. Finally a positive test that tells us what's going on, but devastating to have your 3.5 year old child diagnosed with either inflamatory bowel disease or chrones disease ..... now have to get claire tested too, and have an urgent appointment on tuesday to see gastro-paed, to organise either MRI or scope/colonoscopy, and then massive dose of steroids and antibiotics ....the good news is that she's eating everything, and that we can completely forget about food intolerances anymore! so she had burger king for lunch today!! First time ever eating chocolate icecream and fries!!

Had to take the afternoon off my studies cause my head is just spinning - euphoria with the food restrictions completely gone, and been advised to stop all her losec etc too. But just have to get my head around the diagnosis and what it means long term. Paed said the test result blew him away and was the highest number he's seen in a loong long time. Normal results of the poo kalciprotecton (sp??) is 0-50 and Jess's was 384. Absolutely definitive and explains the pallor etc too. Can probably forget about the motion sickness stuff too ... but have to talk with the paed some more about that.

ok, gonna go and try and settle my nerves. Might need a sleeping pill tonight .... Poor poor baby .....

We too have meat aversions with Will (James was the same and even now he won't eat mince, but he will eat a little of "chunky" things like sausages, luncheon, chicken pieces, maybe casserole). I can usually encourage Will to have a few chickpeas (Em & James really enjoy them - they're the first thing to be eaten off the plate). Eggs are only eaten if hidden e.g. in baking - none of the kids like them as white or yolk/scrambled/poached/omelette type whole form except for the odd egg sandwich. Unfortunately "growing" them in our own backyard hasn't really helped them to enjoy eating them.

At risk of crashing in on someone else's thread, we're still battling on with food. We went to the GP in the school holidays for a script repeat and asked in passing if we could increase his Losec dose as he was having a shoddy few weeks (next private Paed appointment not for another 2-3 months). GP is quite concerned about his lack of growth - nothing gained since the last weigh 4 months ago - he's now dropped from the 50%ile (for the first 6 months of his life) to 3% (and length has dropped too, but head has continued along the line). We'd tried not to worry too much, but the GP suggested we "get a 2nd opinion" with a referral to the hospital Paed (which we accepted but haven't heard anything yet). I had intended to phone the private Paed today to try to get another appointment asap but had such a busy day I didn't have the chance.

Now, there is a purpose behind my ramblings. How do you find a balance between foods he'll eat and preventing "overdoing it" so that he doesn't suffer from it? e.g. Will quite likes grapes - it's one of the few foods he'll eat. Given the complexity of triggers for reflux (which I'm sure many of you will understand), I can't work out in my mind whether he enjoys them because they don't make him feel shoddy, or whether he just likes the taste and overlooks feeling shoddy. And from that I'm not sure whether to let him regulate his own eating of grapes, or to limit him. (he eats very little, so I'm torn between "yay, something he WILL eat" and "don't eat too many, I don't want to lose this food off his list").

Thoughts?

Hi Dolphin

Big hugs. Devastating but good to get some answers.

Wow, what big news Liz.
Hope you have a good sleep and manage to get your head around it.

Dunners - the whole food thing is a minefield!
I tend to let mine self-regulate. She has always kind of know what to eat and what not to eat.
I say at this point leave him to it.
I hope you get an appointment soon.

I think its a really good thing you have actualy got a definative answer, even though it is a bit of a cow too iykwim. at least finally, you can focus on one thing and what you need to do to fix/maintin things, rather than how its been up until now which is treating her for a multitude of things which in the end haven't been the issue. so relieving really, and great that finally she is eating everything.

i'm a bit confused how she has gone from rice crackers and neocate only, to everything (prettymuch) but i'm assuming it was cos her diet was restricted for her?? and not cos she just refused to eat. if it was the later, then thats pretty massive progress in only a matter of weeks huh.

lastly, how on earth, with all her issues, have they managed to miss the diagnosis up until now?? surely if she was having chronic diarrheoa, the first thing they would have thought about was flippen chrones, its the main symptom. bet your chuffed as anything that you changed peads eh.

oh and the other thing was, it would surely be a colonoscopy over an mri yeah? cos they would need to biopsy to get the definitive diagnosis i would have thought. or can a mri give some sort of definitive imaging diagnosis now too?

Faecal Calproctectin is a sensitve but not specific test. That is, it shows how much inflammation there is but not what sort.

A colonoscopy seems to be the next recommended investigation after a Faecal Calproctectin shows inflammation but I'm sure things are advancing and changing all the time, and different investigations may be suitable for different children and circumstances. MRIs are definitely improving and maybe might be able to locate the inflammation??? Its definitely something that Dolphin will need to be guided by their doctors about.

Gem has been tested for Faecal Calproctectin too and the result came back a week ago - also raised. Her paediatrician has said she will need a colonoscopy. Her surgeon is the head of Gem's team, so we'll have to wait and hear what he says in a week's time, and be guided by his experience and the experience of his colleagues. I'm not jumping to any conclusions and really want to hear what he has to say without me giving any of my views. In otherwords an unbias opinion.

Even though Gem and Jess have the same raised test, because they are different and their health team different, they may have different testing, diagnoses and treatment.

yeah, i imagine different dr's have different preferences too roz. i'm surprised an mri could be of to much benefit but then i don't really know a *huge* amount about ibd. wouldn't it be fab if an mri was a good diagnostic tool over a colonoscopy, so much less invasive huh.

roz, so did you get the same probable diagnosis for your dd too then? or are there other possibilities for her aswell as ibd?

Any inflammation can raise the test including inflammation from infections. Yes, inflammatory bowel disease of some description is a possibility for Gem but we have only really discussed with her GP.

I was the one who asked the surgeon for the test and I have my logical reasons which I didn't share with them. I actually expected the test to be normal. You know when you have had so many normal tests, you just keep on expecting them to be normal even though you know something is wrong. Answers aren't that easily come by. But as mum and someone who had just studied health assessment at post grad level, I had to give Gem the best chance of finding a way to cope with her pain and nausea so I sat and thought through all the possibilities and then discussed them with the surgeon. We've worked through quite a number of simple alterations to treatment that have all told us something. I hope he has booked a long appointment slot for us. ;-)

Wow Dolphin - amazing to get some kind of answer after so long.
It is amazing what a fresh pair of eyes can give some times. I've found the change in locum GPs dealing with my kids challenging at times but also reassuring to have a fresh set of thoughts approaching things rather than same as same as all the time.

Dunners - you know my battles with the kids with food and so far as self limiting goes I think there's a tricky line between this far is far enough and hey what ever you'll eat is okay by me so long as you are eating.

Thomas' allergies weren't dxed until 14 months but when I went back and looked at his fav jarred food which I had had as a "if all else fails he'll probably eat this" kind of thing - they were all dairy and soyfree. The kid knew what worked for him.

Until the recent issues with Thomas I was working along the lines of - "you are on the 10th centile now, before we pull the tube and lose the back up I want you eating a normal diet, covering everything barring allergy items and gaining weigh under your own steam." 10th centile and gaining means he has room to wiggle with blips along the way because nothing happens overnight.

Nicholas is a whole different kettle of fish and his non-eating and refusal and avoidance when he even talks to the psych about food means we have to stand incredibly firm and not give him wiggle room.

Right now I have Thomas saying he's full after 3-5 mouthfuls and saying even drinking formula hurts (today's development). So once he said bananas (a good nutritional standby) hurts going down I baked mini muffins for him with banana and choc chips- choc being the lure and the food being to maintain momentum.
Yes, I'll feed him brownie for breakfast if that's all he'll take right now - but I'll offer, gently coax (but not insist) and suggest other things first.

My parents in law were here for dinner tonight and my MIL was really trying to push Thomas so I redirected her to Nicholas and pointed out avoiding pain is a self-preservation measure and so please don't push him too hard. He'd had a really bad day yesterday but still eaten and drunk more today than yesterday. You lose the willingness and you buy into a whole different fight.

The surgeon is concerned about Thomas' current probs and so he's scheduled for a barium swallow etc so right now - even if I'm making more distance to catch later - I'm happy to keep food friendly esp while I have a kid asking to eat.

So short answer to my rambling reply - grapes might just be something he really loves, or they might be the choice that makes him feel least crappy - either way they are leverage eventually - try a bite of this and I'll give you 2 grapes etc.
Until you know where he's at - offer a range but have it as a fall back until they show signs of only wanting and only accepting that.

N will very obviously avoid and struggle with food - in general. Thomas is choosing soft foods only at the moment - but trying hard food if offered. Even with soft foods he's suffering being full too soon. So I'm offering but not pushing until we have answers and when he fails on one offering a 'safe choice' after. But it's easy in some ways when they show clear pain after things too - eg bread is off the menu totally for T atm - the gulps,burps and pain puts him off even formula for hours after and we've tested it many times. So that's not worth it - but carefully chewed potato stix do work...

The choice of either a colonoscopy or MRI is due to when doing any kind of scope the surgeon ends up in specific places, and therefore if her inflamation is in lots of little pockets rather than one big area they may or may not "happen" to find it to get the biopsys we need. With a MRI that apparently can show a lot more so that the chances of missing anything is smaller. But the Paed isn't sure which choice (or whether she'll want to do both) the gastro-paed will make. Probably the colonoscopy, but possibly an MRI first. Not sure, will see at appointment on Tuesday. Aparantely the inflamation can be anywhere in her how bowel system, and whether it's called Inflamatory bowel or chrones or something else depends on exactly where it's locate, and whether it's just in one area or all the way through. I guess they need to know so that we can see what monitoring they need to do in the future.

But of course I just want to get the treatment of steroids and AB going to start making her feel better, but can't do that till we get the scope done. Waiting is always the hard bit. But at least I can understand why she has these constant up and down bouts during the day and I don't get so frustrated with the clinginess

yodasmum - it was us restricting her diet due to mistakinhg food reactions for flares ups from IBD. but also for the first 2years she still definitely had reflux as well which caused a LOT of food aversion plus the motility problem causing continuous choking/gagging problems. i think the success we're having with her eating now and being wiulling to try stuff (usually just a tiny lick) is because she's had long enough without the refglux pain in her oesphagus that shes gotten over the food aversion issues. and yeah soooo grateful i listened to my gut instinct and went to another paed who finally looked outside the box and realised that the reflux wasn't an issue anymore, and that something else that mimiced reflux was going on and did a simple poo test!

roz - i expected all the tests to be negative and was blown away when he said it was positive .... he apologised for giving me such a devastating diagnosis, but i told him how relieved i was to finally get a diagnosis and know that my gut instincts about something being seriously wrong were right.

Still spinning at the moment, can't even begin to think about working on assignments and stuff, just can't concentrate. So I might spent time this morning snuggling with Jess who's not great at all this morning, and doing some research online to get a better idea of what's possibly in store for us in terms of treatment options and how it may or may not (I hope) affect her being able to do school and kindy and stuff normally. Thanks so much everyone for your support, it really does help me stay centered and not so overwhelemed being able to share with others who know what its like coping with a high needs child.

Hi Dolphin

Did the paediatrician say the treatment would be steroids and antibiotics? That is possible but not the only options, and does depend on what they find.

Take a moment to get your head around things although having known for a week about Gem's results I don't think I can do that entirely until we have discussed the next step.

I'll forward you some good information I have found. Don't jump to any conclusions though. Have they tested for parasites?

yeah trusting your gut is vital as a mum dolphin.

and i get ya on the mri thing, that makes sense.

and i agree with roz, try not to get toooo caught up in worrying just yet, wait for the more conlusive test results so you know exactly what it is you are dealing with before stressing about it iykwim. although its highly likely its ibd of some description, you could still be surprised and find out its not as bad or as long term, as you think it is.

the other great thing, once you know what you are dealing with, is that most kids with chrones can live a pretty normal life, certainly school etc should be no worries. its something that needs to be controlled and monitored carefully of course, but many people can live life to the fullest and have very few flares ups.

out of interest, was jess having blood in her stool? either that you noticed or that showed in the stool sample? just thinking about the thread that someone started about bloody/mucosy stools in their baby. from memory i think blood in the stool is one of the biggest indicators of chrones so maybe its worth her discussing it with her dr too. will go read that thread again.

WOW Dolphin I am so happy for you to have a answer. From here things can only improve and move forward in a positive way.
I totally understand the feelings of being relieved and devastated all in one as DS was 4yrs old when he was diagnosed with EE and I thought my world had fallen apart.5 yrs on things are never how I imagined them to be I thought he would be on a restrictive diet for the rest of his life but with with the help of medication he is eating a nearly normal diet. So what I am trying to say is dont look to much into it get, wait till you get a diffenate answer then you can then help her in the right way, treat her appropriately and most importantly know what you are dealing with. IYKWIM. And as a mother its a huge thing to be dealing with.. so remember to take care of yourself.
For me when DS was diagnosed it felt like I needed time to grieve that my child was not going to be the same as other children. BUT in hindsite how wrong was I. With modern day trails etc they can deal with these diseases so much better and at least now you can have a plan .

Didn't Jess have blood in the poos as a very little baby too?

Gosh it makes me feel a bit mad on your behalf, with your first gastro paed. he was so quick to say she would grow out of it.
I'm so pleased you went for a second opinion!

I think I have mentioned that my SIL has chrons?
Hers wasn't diagnoded until well into her twenties, so she had a terrible time of it. She is pretty good now. Ups and downs of course, but mostly because it was untreated for so long.
If you want to meet her some time when you have your head together, and chat, let me know.

hi dolphin,

Just wondering how Jess is getting on?

I'm guessing the chrons diagnosis has been formally diagnosed now yeah?? Has she started on treatment and how is that going? You must pleased you guys can move forward now and that the reflux and multiple food intolerances etc were not a factor after all. life must be so much simpler for you all now :phew:

I wish .... we're back to square one now. Had a scope, bloods and a week in hospital with a bug which she crashed really badly needing IV fluids for 4 days. Scope etc came back negative, so specialists are back to having no clue. wahhhhhhhhhhhhh

Oh Dolphin so sorry to hear that you got no answers with your scope .What came of the high and low blood sugar levels did you get to the bottom of that.
How is there diets now are they eating more,has that had any positive effects to her behaviour.
You wahhhhhh away my dear we are all hear to listen

GRRRRRRRR where does that leave you? whats the next plan of action??? Hows the new diet going?? HUgs xoxo

oh, so no chrons or ibd afterall?? so much for gold standard huh?

personally if it was me, i would be chuffed it wasn't that but i can understand i guess.

lots of positives have come of all this though surely. if you read back your posts at the beginning of this thread, and others, look at the advances that have been made. biggest being of course, that you no longer are restricitng Jess' diet due to being intolerant to everything. she's gone from eating rice crackers and neocate only and you wanting her to go through surgery for the reflux, to eating everything, having no intolerances after all, and not? having reflux now either. and the motion sickness thing got discarded with the probable chrons diagnosis eh, so thats another thing to not need to worry about which is awesome.

Whats the story with the blood sugar levels? i vaguely recall you posting some years ago about low blood sugar levels, are they of concern again now? I wonder if now that she's on a normal diet that will sort itself out with time too (providing that is the problem of course lol, i'm guessing here).

I wonder now that Jess is older, and eating, everything will just sort itself out over the next few months and that with any luck by christmas you will have a normal healthy daughter. If nothing else, at least you've ruled heaps of stuff out in the last few months and she is being pretty thoroughly investigated by the sounds of it. Its all good news so i definately wouldn't get disheartened by the lack of serious disease diagnosis. celebrate it i reckon

Great idea to celebrate the fact that nothing serious has come out of this and be greatful that all tests have come back negative.You can move forward in a more relaxed positive way knowing that all the BIG issues have been ruled out.
I am hoping the latest lot of bloods are all OK, and its just something as simple as regular carbs/food to keep her blood sugar levels stable and with time that will all balance itself out. You must be so relieved you have come so far

great to celebrate I agree, but incrediably frustrating .... when you KNOW something is wrong with your child, when you know that what they are coping with on a daily basis is so far from normal that regular parents can't even begin to comprehend, when your child's development and quality of life is severely comprimised .... well lets just say that celebrating doesn't even come close to what I feel like doing.

We've just tried a small reduction in losec and it's all turned to custard. So had a few awful nights now and hoping for a better night tonight. Heck, half a nights sleep would be nice.

Only thoughts the gastro-paed had to offer was that as the biopsy's were clear it means that her reflux is controlled with her current high dose of losec. And that some of her issues may be due to significantly delayed growth, and her body may be trying to do some catch up growth .... but really, just means another specialsit has no idea .... and when Jess turns up happy and perky at the appointment .... sigh .....

so yeah, don't think I'll be celebrating much any time soon. Got a long way to go yet. Yes, major improvements, yes I'm really pleased she's on a normal diet and no longer intolerant to every food under the sun. But the sun ain't shining yet, and I'm too mentally, physically and emotionally exhausted to celebrate the fact that we're moving forward finally, while I know how long a journey we've still got to go. especially as we now know that she does have reflux as she can't handle a reduction in dose ...

While I appreciate how hard it is to believe you have an "entitlement" to celebrate, what I have been seeing is a pattern of elimination. It is my understanding that when people go to specialists they go through a process whereby they discount potential health issues. I have watched how you have gone down the track of testing and it has all come back negative -which is the celebration part! Therefore at least you KNOW they do not have those issues. I am now wondering what symptoms she has developed that encouraged her to put her back on to a higher dosage again? Did you see her Paed to discuss it, or did you ring her Paed? From what you said last time was that you were overjoyed with the thoroughness of the last Paed. Is this still the issue. Because if you have a good relationship with this person then surely he could guide you in what will be the best course of action and where to from here. I hear that you are tired,I do know what that feels like for years on end, which is why I think it could be helpful to consult with someone you trust. Are you able to do this?

Yes, of course I have consulted with the gastro-paed. I just saw her with jess on Tuesday night - when we got our results. this was when we discussed how the biopsy results showed no signs of reflux, which either meant it was controlled on her current dose, or that she was starting to outgrow it. So we had a plan to trial a reduction in dose and see what happened, but the second we saw a return of symptoms we were to put the dose back up, which is exactly what we've done. The symptoms we saw were acid breath, regurgitation, reduced eating, behavioural changes, not sleeping, waking up hysterically and taking an hour to settle down, etc etc. all the normal reflux stuff ....

I'm trying to come to terms with what happens next. Our paed has talked with us about where we go next. There are a number of options for us next, and they all involve more complicated testing. In particular he suspects a metabolic disorder, but these are often complicated tests and we now have to decide how much further we want to go with this. Needless to say the negative test results are good on one level in that it rules out a number of issues, but we are still without a diagnosis and have some difficult choices to make.

So yes, we'll be back to see the paed soon, but we have a number of things to think about before we go back. so we're taking some time to see how stable we can get Jess now that she's out of hospital, over the scope, over the losec reduction, and she's just got a flu bug, so we'll wait for that to pass. Depending on how stable we can get her will depend on how agressive we need to be with any further testing.

Dolphin - have you ever heard of NERD? It stands for Non Erosive Reflux Disease and makes for some interesting reading for those who have obviously got reflux but don't show anything on their scopes, and are not well controlled by Losec (as in on a high dose). I believe that this is what is affecting Katey and she is having her fundo operation tomorrow.

This doesn't allow for rebound acidity unless a week had elapsed since the reduction. I know rebound is hard but to confirm GORD you really need to allow for it but of course you need to discuss this with your paediatrician also. I just wanted to point it out.

It is good that all the tests have come back normal. I so know it is hard to celebrate whilst your child is still not right. I am celebrating with Gem even though she obviously still has considerable problems because she is a bit better.

Jess has gone ahead so much. It is possible things will continue to improve.

sorry dolphin i'm a bit confused. I thought it would be cause for celebration because along with all the negative results you are getting, i also thought that Jess was getting better.

From when you started this thread Jess has had multiple food intolerances completely ruled out (after 3 years of thinking she was allergic to everything) and now chrohns/ibd ruled out (which on reading back actually makes sense cos from what you wrote she never had the typical symptoms of chrons anyway) aswell as a possible motion sickness disease ruled out and i had thought the reflux had been ruled out too. I was under the impression from your posting, that as each thing was ruled out, the symptoms that went with those diagnosis no longer were an issue for jess which is why i had assumed that you would be celebrating her negative results. Obviously i've only got what you have written here but i made my assumptions because each time you had a new possible diagnosis for her, the symptoms she had seemed to go perfectly with that particular diagnosis but as the new possible diagnosis came along, the symptoms matched that better iykwim. and now that they are all pretty much ruled out, then thats a whole heap of things that she doesn't have and significantly reduces the possibility that there is infact anything seriously wrong with your daughter. so yeah, why i had thought it would be cause for celebration if ya get my drift.

having said all that, she clearly is still having some issues which you are concerned about and it seems they are reflux related yeah?? so maybe, with the losec and now the increased amount of solid intake she is having, she WILL start to outgrow the reflux. another words, she will have a greater chance of outgrowing it now that her diet doesn't consist solely of neocate. and really, it is fab news that the reflux has been well controlled and not caused any damage to her oesophagus thus far, even if it has hindered her growth till now. i reckon with the change of diet though, you may well find her growth and development starts catching up to her peers with any luck. Does the pead think along these lines or is he certain that Jess does have something else going on?? as far as making the decision about whether to continue invasive testing, i can understand how hard that would be for you after everything. Is it possible that you hold off on any testing for say 6 months and just give her time to catch up on her own accord whilst continuing to treat the reflux? and then if in say 6 months to a year, if there is still concern they could do those tests then maybe?? so hard huh, knowing what is the right thing to do.

lastly, what is the reason for the pead thinking a metabolic disorder? is that due to the blood sugar thing? what are her symptoms of that if you don't mind me asking cos i have a son with low blood sugar level issues and i may be able to tell you our story if its any help.

well i'm starting to come out the other side mentally now, just dealing with 2 kids with bad colds, and throat infections. so both now on a course of ab's but another week and we should see the sunshine.

i'm thinking at the moment to hold off on any more testing cause as you girls agree she may well do a lot better now shes off bottles and on solids finally. It's a balance between getting investigations done now, before I start full time work, and before the girls start school in a year and a half. but the way things are progressing i think its worth holding off for a bit, getting her stronger and healthier, and put a little reserve weight on.

i think her reflux is more controlled now, in that she has actually spent a few nights in the last few weeks sleeping alone in her own bed!!!!

the paed is thinking metabolic disorder from a number of symptoms that don't commonly match the reflux, and are ones that have become apparent in the last 6-9 months. Which includes the low blood sugars, no reserves, deathly pale, lethargy getting significantly worse at times, etc. But in the last 2 weeks after having the stint in hospital, I'm begining to wonder if the hypoglygaemia (low blood sugars) is really the root of these problems rather than a metabolic disorder. As long as we keep her fed within a 2 hour interval every day (so constant small meals), she is doing SOOOOO much better!! When she gets sick and gets really low, she keeps wanting sugar and this keeps her going much better than she used to even when she isn't eating much else. Her blood sugars after fasting are normal, so that's reassuring, but there is also the possibility that either it's just another instance of her gut and system taking a long time to work properly (possibly due to being prem) or that it is a reactive blood sugar issue in response to food. Contemplating (but not very positively at the moment cause we're controlling her far better than we have in years!!!!) whether we get any testing done for this or just leave it be as many kids outgrow this by age 8-9 .... could also be due to the anorexia she had ... all due to her gut not coping and needing more time to come right I suspect .... so who knows, at the moment I'm just enjoying seeing COLOUR that isn't deathly pale in her cheeks and energy to last HOURS in a day rather than 1-2 hours of energy and the rest of the day curled up in a chair!

Yodasmum - I'd love to hear more about your boys low blood sugars if you have a moment, keeping track of her energy and sugar levels (i.e. juice or sugar cubes as a quick hit when desparate, and focusing on low GI bread, cheese, protein etc).

hey dolphin, yah for coming out the other side of winter illnesses, they suck eh.

and yah for the progress being made so far. sounds really promising and from what you are saying, definately cause for not putting her through more testing for now.

My eldest son had what is called ketotic hypoglyceamia, and from what you are describing, it sounds exactly like what jess has. it is relatively common in children and is easily enough diagnosed, often just clinically based on symptoms. the difference to more serious metabolic issues, is having ketones in the urine and this is easily checked by dipstick. so, if she is having low blood sugars and the sypmtoms that go with it (pale, lethargy etc etc) and ketones in the urine, then that is almost definately what Jess is having. No further testing is required and i wouldn't think you pead would think it warrented tbh, if she is responding to food. So, as you have found out, the best way to maintain it is to feed frequently and along with sugar, carbohydrates are important, even more important than sugar itself. high protein/ high carb foods are the best. Although it may seem a bit daunting, it really isn't that big a deal of a diagnosis. its relatively common to varying degrees and so long as its managed well it shouldn't have any lasting affects on jess and she will grow out of it. My boy did by about the age of 7. The only thing we did was make sure school were aware of it so if he started getting the symptoms at school, they would let him eat. certainly no biggie and we never treated it as a disease or anything even remotely like one.

so yeah, it definately sounds like what jess has and i would say, that if you control that and control the reflux, given a bit of time to grow bigger (cos she will now that she's allowed to eat) she will start to outgrow all these issues and with any luck by 5, will be a normal healthy little girl.

thanks yodasmum! The info really helps, I hadn't realised we could do the dipstick test ... way easier than the blood tests! So I now feel confident enough to go back and see the paed soon and sort it out.

I'm enrolling the girls in a new daycare very very soon, and looking at schooling etc, and been trying to figure out how to balance her energy requirements with work hours, and whether or not she can manage more than 6 hours etc. Cause based on the way she was before, there was no way she could cope, but now .... just going to go and talk to a couple of places and see how they feel about feeding her outside of "normal" meal times and TBH I think this will be my deciding factor on which daycare she'll go to .... cause if they aren't flexible then Jess simply won't cope ...

dolpin, if it was me, i wouldn't even worry bout rushing back to the pead. she would have had her urine checked in hospital so no doubt they are thinking long those lines anyway (telling you they grow out of it, normal fasting sugars etc) so i would just manage it as you are seeing that it is working and see the pead as planned further down the track. like i said previously, its not a biggie (provided you manage it) and the pead most likely won't worry bout further testing anyway. if they were seriously concerned about her sugar drops, they would have investigated further already.

Hi Dolphin
Glad that things are starting to come right.
Yodasmum, I would imagine that the low GI carbs are good as well as the protein you mentioned? So Basmati rice is the rice that tested the lowest of the GI foods and Kumara is very good as well. You could mix the kumara through some potatoes if you don't want to overload on salicylates. I have an article I can try to find on low GI foods if you want, Dolphin.
I wouldn't contemplate anymore testing to fit in with schooling and work unless the paediatrician is really recommending it. Just give things a chance to settle down.
Do you have a letter from the paediatrician that says that Jess needs to eat regularily to maintain her blood sugars? If you do, give this to any preschools you are interviewing. As long as it is a healthy snack there shouldn't be any problem - obviously giving jellybeans might become an issue with the other children - but eating normal food is best for Jess I would think rather than eating treat high sugar foods that give the sguar but nothing else. Sugary foods will also give the quick hit but not sustain for long.
I hope those ideas and thoughts help but they are purely that.
Take care