Living with three children that have eosinophilic entro colitis.
Hi I am Michelle and I am married to Steve we have three children, All of them have Eosinophilic
Entocolitis and our middle son also has eosinophilic oesophagutis accompanied by
Multiple food allergies. The eldest has a reflux of the bowel which means when
he eats he needs to go to the toilet straight away. One of my
children had a N.G tube and he had this from june 05 until feb 06 when he had it replaced with
a peg. In the last 18mths we have been to hell and back not
just with the illness but with medical people and education
authorities not beliving that this illness exsists and that myself
and my husband have caused our children to have this illness.
All three of the children showed major symptoms from the age of six
weeks,My little girl was rushed into hospital at the age of 2 weeks
because she was bleeding from the bowel. At this point my two sons
had already had biopsies and had been confirmed as having major food
allergies, The hospital decided that my daughter was reacting to my
milk, as i was not ready to give up feeding her i was put on a
restricted diet to see if this would help. My middle son by this
time was already on Neocate we had tried pepti jnr,
Nutrmiagen,Wysoy, none of these helped. The neocate helped for a
short time then we went back to major vommitting it never ever
stopped the diaherra at all.
My eldest who is 12 has never had a day without having diaherra
eventhough he was on a restricted diet, but in Jan 09 he became very ill and could not eat any food apart from baby food, he went to GOSH for yet another scope and biopses. On returning from theatre we were told that he had to go nil by mouth and have EO28 extra for at least 8 weeks if he could not drink the required 2 litres a day he would need a Nasal gastric tube which he now has. He has not been able to goto school and has been off for 8 months, In June Josh had a freka peg inserted and is still on feed only. We started a food trail in August where josh tried 2 tbls of chicken which he reacted to. He has been able to tolerate monk fish, haddock and potato, josh can only have these foods for 1 week then he must not have them for another four weeks. AS of today Sept 7 Josh has started back at a new school and is still feed only, apart from his two tablespoons of food on an evening. He is on a cocktail of drugs which include nalcrom singlair,
zirtek,MMF, calci chew, ketotifen and omeprozole
he has also been on sulfasalazine, prednisolone, azathoprine,6-MP balsalzide. All of which he had major reactions to.
My middle child is the worst of the three of them with behaviour
problems and he is the most infultrated.
For seven years we have had screaming, kicking, bitting,hitting his
head off everything and anything,smashing the house up hurting his
brother, sister and parents, he always has to be right everything is
black and white no room for colour at all. Saying all this he drives
us mad but i have to admire him as he has had blood tests every week
for the last two years he is now on to his ninth biopsy and he
does not bat an eye lid now he has had his N.G tube changed 8 times
with out any knockout drops.
He hardly eats,he has EO28 Extra 1806 per 24 hrs. When he was on a
larger volume he was very calm but now that he is trying to eat a
little his temper and attitude are back. Callum is on a cocktail of drugs,
He was on cyclosporin for 14 months which was a very scarry time.
At the moment he is on prednisolone, azathoprine, sulfasalzine, domperidone, omeprozole and nalcrom, flixotide.
Our little girl is now going down the same root as cam she complains
whenshe eats that she has pains and she tries everthing not to have
a full meal.She has stayed the same weight for over a year now and gosh do not know which route to take now with her.
Michelle and steve Mum and Dad to 3 brave children aged 12,10,8.Two have eosinophilic entrocolitis and EE and one also has eosinophilic colitis,
On a wheat, dairy,soya,gluten,egg free diet.
Suspect citrus fruits and potatoes,herbs.
Medication:- weaned of cyclosporin With bad effect, azathoprine 50mg pday,
prednisolone 15mg everyother day.Sulfasalizine tree times a day. domperidone,four times a day, nalcrom four times a day, and flixotide twice a day
.omeprazole 40mg, gaviscon add to Eo28 extra 2litres per 24 hrs via a peg.this Callum my 10yr old.Callum also has hyper mobility.
ketotefen 2twice a day, nalcrom 4*a day,montelukast 5mg once a day,
zirtek 5ml every night,pentasa one tablet twice a day major reaction to this drug. was on 20mg prednisolone every day, but having a short break from the pred, and 20mg omeprazole also on balsalzide twice a day Not on this med any more as he had a allergic reaction this was replaced with MMF which is a immunosuppressant .This is Joshua my 12 yr old. Joshua has also been diagnosed with autoimmune disease.
Nalcrom 3* a day, movicol three packets every day,
sulfasalzize 5mls three times a day, ketotefen one once a day, citerizine once a day. Montelukast 4 mg once a day this has been stopped as Alexandra-grace was ill whilst taking it.
She also carries an epipen.This is Alexandra-Grace my 8 yr old.
All three have inhalers.
Confirmed reactions to wheat, gluten, Soya, egg, dairy.
Also had reactions to citrus fruit and some herbs.
Medication reaction to pentasa and sulfasalzize, azathoprine and 6-MP balsalzide. Pednisolone.This is Joshua.
Callum has confirmed reactions to penicillin and erythomocyn. Alexandra is also allergic to penicillin.
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hi michelle
Just wondering how your littluns are doing? are you still waiting for a peg?
my eldest has now started school but is really struggling. the tiredness, mouth ulcers and leg pain are making him feel really fed up and his reflux is bad again. i wonder if he's had a flare up because he's had a cold (which has lasted 3 weeks). Our appointment with Dr Shah has just been cancelled and they are fully booked till end of November!! mare.
anyway, hope you are all ok,
Kitty
Hi Michelle
I've read your blog and understand and appreciate your story I have a three year old girl with eosinophilic duodenitis and a new addition of my 8 month old son who is undergoing treatment awaiting endoscopy. I'd be interested to hear from you or other parents with children with this condition as there is very little support or understanding for this problem and it's nothing short of a miracle my daughter is still alive.
Please feel free to email karenericacampbell@hotmail.com
Hi Karen
I'm sorry to read your 3 year old and 8 month old have this horrid condition.
My 2 sons have EGID - they are now 5 and 2. have you created a blog on here to tell your story? if you do, you may find other parents, who are going through something similar, will contact you.
Has the treatment improved things for your daughter? Have they both been very poorly?
I hope to hear from you or read your blog,
Kitty
Hi Michelle
My heart goes out to you. I am just an ordinary mum and know nothing about your children's condition, but I do know that it is possible to eliminate their allergies and intolerances simply and non-invasively.
The treatment is called NAET (Nambudripads Allergy Elimination Technique) (www.naet.com) and my family were treated by Lynne Greenmoor Tel 01189352695 (www.haveahealthylife.com). I understand that Dr Nambudripad was a very poorly child herself and it was lack of understanding or treatment that led her to study and develop this technique. I can't tell you how amazing it is! Four members of my family have been successfully treated, and many of my friends are now being successfully treated too. I am sure the medical profession will tell you it isn't possible, but they would be wrong because we are living proof that it works. I would urge you to explore this further, it could be life-changing.
Best wishes
Margaret
As of today 23 rd sept I have all three of my children at home due to swine flu in the schools. Josh started to go down hill at the end of last week the usual black rings under the eyes, the pale skin and the feeling sick and dizzy. He is back to feed only after 8 weeks of food trails.
Josh has had postive reactions to carbonate water, chicken, cod, sweet potato. He should be trying turnip this week but because he is unwell he can not have anything,so we are back to square one. Alexandra is showing signs of having swine flu. Callum is also in the middle of a flare up so he is very hard work at the moment.
The children can not enter the school until the last case has left school which could be in a few weeks time.
so there it is two weeks back at school and they are all off and it is not even winter yet.
Michelle.
hi michelle
i am so sorry to hear they are all at home unwell. do you have to keep them off school because of their immune systems being weakened or just because they swine flu would give them flare ups?
have you been given any good advice about the swine flu jabs or using tamiflu? Will you be having them? i asked my gp and was told he knew nothing about EGID so he can't possibly advise me on weather to have jab or use tamiflu! helpful!
he suggested i ring the helpline but i pointed out to him they are untrained staff and won't know the answer - he said 'i know' and that was it!
such a shame to hear that they were getting somewhere with food but you are now back where you were. l can't imagine how frustrating that must be. Do they find it socially difficult not being able to eat like other children? we find parties are the hardest.
My 2 boys have food problems but they are eating some foods now thank goodness- although both rely heavily on their feeds but they do take it orally as long as it's from a bottle (they still refuse to have it from cups even at 3 and 5). Although i know i am very lucky they have moved on this far, i still get frustrated sometimes that i can't get them eating a normal diet - our eldest has a food aversion so he only wants to eat a few foods and won't eat enough of them to get the right calories/vitamins so gosh have increased his feed. our youngest doens't eat enough either but he also has trouble swallowing sometimes and spits and chokes. the choking is very scary and he's just starting preschool and i'm scared he'll do it there and they won't notice as his choking is so silent. bad ulcers don't help either adn they are still too young for the mouthwashes.
anyway, i really hope things improve for you all soon and that they get back to school quickly.
Kitty
hello my 6 yr old has eosinophilic enteritis and is under dr shah at gosh we have the same problem we are getting no where very fast always a fight we have an appointment in sept i must say this condition is very rare a man in the usa is doing loads of testing. it took 3 yrs to find out what was wrong with my girl plus she also has elher danlos type3/4 where abouts are you kitty
Hiya
Really sorry to hear you are having a battle. Has your daughter improved at all since going to GOSH? There is another mum on here with a 4 year old son who has both EGID and Ehlers Danlos too - her blog is; http://www.parentsown.co.uk/blogs/helenb8man
I wonder if the 2 conditions are connected?
It's sad that it's taken all of us so long to get a diagnosis for our children. They suffer so long. I hope things change. What symptoms did your daughter start with? Was she ill from birth?
I am in Berkshire. Where are you?
Take care,
Kitty
i just wana say thumbs up to u my 6 year old has just recently been told taht he might have eosinophilic colitis untill now we tried evry thing constant diorea up 10 times a day when i took him to his consultant recently he made me cry said to me im makin it up my son is jus seekin attention when ever any 1 is illl he always falls ill ontop he has atopic eczema asthma hes growth and height not good hes 6 but for last few years weighed only 17kg to make things worse my older son is 9 he has impulsive behaviour disorder whom we are still fighting wityh school because we know he has autisim and adhd but they wont agree he self harms u name it any help u can give me regarding this condition wud b realy appreciated im in hurry so il write to u again realy nice of you to write this information thanks
Hiya
Sorry to hear your 6 year old has just been diagnosed. Are you with Great Ormond Street? Its so hard when no one listens to you and you have to fight really hard to get help. I think thats a frequent experience for families with gut conditions.
the information centre on this website has information on EGID - http://www.parentsown.co.uk/page/eosinophilic-gastrointestinal-disorders-egid
Have you been given any information by the hospital?
Kitty
hi with my son they suggest its that im pretty sure it is after doing all the research the picture fitsin his always catchin coughs colds and infection dioreea alays havin body pain for instantce lat night he kept us awake coz was in alot of pain with his legs u feel so sorry them u dnt know wot to do we live in west yorkshire his with a consultant here
please keep in touch thnks
Hiya
My boys have this problem too - at night the body pains are a lot worse (mainly in the legs). We've found heat (hot water bottles and wheat bags) and massage helps a bit - have you found anything that works?
Kitty