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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