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 .