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Shana:

Sorry it has taken me so long to respond but things have been a little hectic

at my house. I am a mom of 3 boys - Jake (5 1/2) and 21 month old twins

(fraternal) Clayton and Cole. Clayton is the one with all the issues. He has

been on Neocate formula since 6 months of age sue to severe reflux, vomiting,

FTT and allergies. We just switched to Vivonex pediatric last week. Clayton

has a g-tube which he got in August and had Nissen fundoplication in August

at the same time. Clayton eats almost nothing by mouth - mainly due to total

oral aversion - although he puts things other than food in his mouth. His diet

is monitored by Dr. Sampson who we see every 3-4 months (DO YOU HAVE HIS PHONE

NUMBER - I will e-mail it to you). I also e-mail Dr. Sampson's nutritionist on

a regular basis to discuss wht foods Clayton can have. He cannot have most

foods - wheat, egg, soy dairy, legumes, beans, meats. He can have rice, corn,

potatoes, such veggies (he eats none), some fruits (he will ocassionally eat

gerber graduate apples and pears - 2-4 pieces) and for some strange reason he

likes watermelon. We can always tell when he eats something that he cannot

have or does not agree with him - stomach pain - very uncomfortable -terrible

excema and he is unable to tolerate his normal g-tube feeds.

Clayton is not completely off food but it is still very hard to keep him away

from foods that he cannot have with 2 other boys in the house who can

basically eat everything and who love mac & cheese and chocolate and cookies.

In a message dated 12/28/98 3:10:57 PM Eastern Standard Time,

selias@... writes:

<<

Miriam my 3 year old is really having a hard time not being allowed to eat

anything even though she hasn't been able to eat for 2 years already but

now that she is older its much harder and other kids make fun of her that

she can't eat and that sehe drinks from a bottle >> Have you tried any foods

with here namely rice or corn or potatoes. Clayton will bite on rice cakes and

French fries and apple crisps -- dried apples. Clayton really eats only a

bite or 2 at each meal but at least he tries and we try. As for the bottle

Cole drinks completely from a cup but since Clayton only drinks 4-8 ounces a

day of the Neocate (he still gets that by mouth) and he will not take it from

a cup -- he is also still on a bottle for formula and a cup for juice. Maybe

you can try not to give her the bottle in front of her friends. Have you

tried the flavor packets?

>> Is there anyone who has had to keep there

kid off all foods for 2 years if so how do you handle it.>> It is hard but I

think knows this better than me as we try to feed Clayton the

limited foods that he can have. Dr. Sampson does not like to have kids off all

foods for long periods of time unless they refuse to eat- Dr, and

Sampson say that they are almost always able to get the kids to tolerate at

least 6 foods.

>>We have been

doing many tests to find out what is wrong with her why she is unable to

tolerate any food at all. Now they have been sending her blood to Toronto

and they have been doing tests there.<

> I have tried many times to reach Dr.

Sampson to see if he would be interested in the case or not but he never

responded to us at all.>> WHERE DID YOU TRY TO CONTACT HIM. He is currently

at Mt. Sinai hospital in NY and a very busy man. You may want to write to him

first before you call since I am not sure he will call you back. He is a

very nice man and a great doctor. He only sees 10 patients a week and spends

most of the other time doing research. It takes 4-6 months to get an initial

appointment.

>>Also My 17 month

old son is worse than my daughter (she can tolerate Vivonex pediatric that

is what she has been living solely on for now 2 years)he cannot tolerate

anything except mothers milk and only if mother is on a special diet as

well. << Apparently your kids seem to have the same condition. Are your kids

on any medications? Do they have reflux too.

>>With vivanex he gets very bad diareah and today I received from my

mother some sample packs of neocate 1+ and with in 10-15 minutes after he

had about 30cc he started to throw up alot.Has anyone had experience with

neocate that there kids vomitted from it.>> Babies take a while to get used

to a change in formula and it takes several days for them to get used to it

and adjust. Clayton switched to the Vivonex since he was severely constipated

on the Neocate1+. He has not gotten diarrhea from the Vivonex but he seems to

be doing a little better on it and not quite as constipated.

Hope that all is wll and let me know if I can be up any help.

Love,

Sharon

mommy to Jake (5) and fraternal twins (34.5 weeks) (3/30/97) - Cole -(nda)

and Clayton (eosinophilic gastroenteritis, food allergies (milk, soy, eggs,

wheat), g-tube, Nissen, latex allergy, mild DD, undiagnosed neuro issues,

sensory integration disorder and now tremors and suspected metabolic disorder,

WHEN WILL THIS END)

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