Ulcerative colitis or crohns- anyone with experience ?

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Permalink Reply by Beverley on February 12, 2012 at 1:01

You really need Nut AA or Neocate then. It may still be an issue with allergic colitits being caused by cmpi so until you've got the milk right you won't know if there's anything else going on. X

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Permalink Reply by Ginny S on February 12, 2012 at 19:15

look up everything about Dr Shah at Gt Ormond St. Go and see him once privately, cost 200 quid. i have put endless posts on here. Dr Shah is the only doctor studying food allergies/gut allergies/ eosinophilic condition. 50% of reflux is not reflux at all it is about food allergy, in the gut which is different to food allergy in the blood. It is undetectable except by food elimination and endoscopy and colonoscopy which shows an abnormal presentation of the gut. In the worse scenario ulcerative colitis. If that bad steroids are needed to get the inflammation down, plus ketotifen an anti histamine (permanently), plus nalcrom an allergy blocker, plus total eliminiation of dairy, wheat, gluten and soy. Sometimes eggs as well, but not always. Gluten is a killer. My daughter did not eat until she was nearly three and has been totally sorted by Dr Shah. She was on omeprazole and ranitidine and a reactive food free diet, but was not ok until she had ketotifen. She is still on lots of meds but now eats, albeit a small range of food because of what she's been through. 

Dr Shah is your man, he has all the therapies and does the correct investigations. You do not need the barium swallows etc!

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Permalink Reply by Beverley on February 12, 2012 at 19:56

It's interesting to hear about your daughter Ginny. Is she still symptomatic on her restricted diet and meds? And do you think the meds helped her to tolerate food? My LO is 18 months with Eosinophilic colitits and just eats 2 foods. He's not tolerated any new food for 8-9 months. Currently just on omeperazole and cetirizine. He worsened on Nalcrom but I keep waiting for him to be well so that I can try Ketotifen. It's interesting that you feel it's been key. Gives me hope! We have seen Dr Shah.

X

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Permalink Reply by Ginny S on February 19, 2012 at 20:47

Hi Beverley

Maybe email me directly as I am not on this site any more as my daughter is four! Someone just emailed me directly as I had left posts on here about two years ago.

Can you go back to Dr Shah? Ketotifen and nalcrom were key for us. Stella was off all the height and weight charts and would not eat even at 2 years 6 months. Dr Shah was a life saver. We had been at Guildford and then Chelsea and Westminster. Stella would not eat anything but potato and chicken and that was it for a year. Even that was a struggle. She had to go on steroids for 2 months first and then ketotifen and nalcrom. She once came off the ketotifen for St. Marry's to do more tests. She came off it for five days and she didn't eat for two months afterwards. I think it is essential!!!!!

I don't think cetirizine does much. 

Stella is on omeprazole, ranitidine (also has an anti histamine), ketotifen, nalcrom and the winter antibiotic azithromycin. 

I am a total hippy and anti drugs so it is quite a thing for me to have my daughter on so many meds. However, I am really grateful as she now eats a range of food. She is also dairy, gluten, wheat, and soya free. She will not try new foods. Literally she will add in one food every 2 to 6 months. She has been eating apple and grapes in the last two weeks having not eaten fruit for 2 years!

She just rotates gluten free sausages, chicken, duck breast with fat on it, and gluten free fish fingers, all with veg and potatoes. She also eats plain gluten free pasta. She has never eaten any type of bread, sauce  or pudding, except apple crumble made by me!

It is very restrictive but they have told me to relax about it at GOSH as she does now eat, albeit a monotonous boring rota of food, but it is ultra healthy (meat and two veg!). She does now also eat the gluten and dairy free biscuits and cakes (some of them). 

When she was bad she only ate two foods as well and even that was a struggle.

I would say that any child in pain will not eat, they just will not do it!

Your child is obviously not right and I would start looking into meds that control the pain. Stella was free of all the foods, but I think some children, like Stella are so unlucky that their guts are basically slightly allergic to all food so the meds are helping to control the inflammation. 

She was miraculously better after the steroids and ketotifen. I can't think why I spent so long deliberating about it as her life has been totally transformed. She is also a different person - so chirpy and sweet. I think she was totally starving as well as in pain. 

My son is nearly 6 and he has Eosinophilic Condition too, although diagnosed retrospectively thanks to his younger sister. He just had appalling diahorrea and so he is managed just through diet, not through any meds. He is gluten, dairy and soya free too but has never taken any medication. Food elimination only worked for him. Apparently the condition gets worse with each child. Marvellous! No more kids for me!!! Stella was off the scale - didn't eat until she was three despite a reactive food free diet etc. and some drugs. She has had to go on all the drugs, but at least she is now eating and happy and even at pre-school for two full days now. A miracle for me. 

I also think gluten is a killer. Don't only do wheat free. Lots of us mums who have been dealing with this for a while (have friends who have 8 year old with condition) all agree that gluten seems to be very bad for them. 

Hope this helps!

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Permalink Reply by Ginny S on February 12, 2012 at 19:17

Also by 14 months it's safer to just use rice milk. I have done that with both my children with a fat supplement called calogen (on prescription) plus abidec vitamins. 

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Permalink Reply by Ginny S on February 12, 2012 at 19:18

Sorry also one other thing - domperidone a killer. My daughter was on that for 6 months and she screamed her head off until she came off it

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Permalink Reply by Sara B on February 12, 2012 at 19:58

My son was the same ginny, but my daughter was ok on it. it did mask her cmpi though, so on balance i have come to believe it is the work of the devil!

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Permalink Reply by Laura McKechnie on February 12, 2012 at 19:42

Argh,

Feel for you - Exeter seem to be a nightmare at giving out Neocate.  You really have to be bolshy and push for it.  State the facts pure and simple at them. We ended up getting it prescribed at 7.30 pm over the phone as I kept hounding them!  Don't know who you're paed is there but don't think there is a gastro paed in exeter so bristol may well be your best bet, (at least then the funds come out of a different health authority budget than the ones prescribing it!).

It's difficult to work out what the problems are and what food are causing a reaction when you don't have an even base to start with.  If theres still a problem once on neocate I'd try dropping wheat and eggs and go from there.

Hope things improve for you soon.x

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