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.