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