Re: Robin Update

[Guest guest]

From Shana Elias

I tried my 18 month old son Yisroel on neocate last week and after about

10-15 minutes he threw it up and the next day he had a VERY severe asthma

attack the doctors are not sure if it is from the neocate but it is

possible and they want me to try again I am very scared to try him again.

The doctors here are only looking at my 3 year old and not my 18 month old

who seems to be much worse.He can only tolerate mothers milk and nothing

else .Vivanex he gets terrible diareah, he is very allergic to wheat, milk,

soy, and all medications, these things we know for sure but the doctors

believe he is very similar to my daughter Miriam who is unable to tolerate

any food at all.The doctors are very scared to try him on food because that

is when Miriam became a very sick child.He has constant double ear

infections that we can not give him antibiotics for .He has been off

prednisone now for 3days now and he seems to be starting his asthma all

over again he seems to be constantly sick and the doctors don't want to

really deal with him because they themselves don't know what to do. I went

to the hospital with Miriam yesterday to try her on a food and see if her

body is able to tolerate anything yet (she is so desperate toeat) We gave

her a 1/3 of a sweet potoe she was so excited to be able toeat something.

We are still not sure if she can tolerate it yet she has been having a lot

of stomache pains since she ate it so thedoctor said to wait a day and see

how she does today and give her a drop tomorrow. Ireally hope for her sake

she will beable to have it .It is very difficult for her to see everyone

eating all the time adn she is unable to eat anything. I read there was

someone whose family was going off all food and going to be on only vivanex

how is that going how are you able to manage to keep the kids away from

food and to not take. Miriam has been only on vivanex pediatric now for 2

years solely she is doing great with it ( except that her body is very weak

and she is considered clumsy in her body movenments that is because he

rbody is not working the way it is supposed to I was told by the nurologist

yesterday. In a nut shell I am really hoping that sweet potoes willgo for

Miriam ad someone will do something for Yisroel.(He can't live his whole

life nursing)

Hope to hear from someone.All the best

Shana (mother of Miriam 3 ,and Yisroel 18 months unable to tolerate

anything and Tehilla 6 1/2 who is able to tolerate everything)

selias@... ---------

> From: LeeWagner@...

> To: eosinophilic gastroenteritis (AT) onelist (DOT) com

> Subject: [eosinophilic gastroenteritis] Robin Update

> Date: Wednesday, January 06, 1999 7:13 AM

>

> From: LeeWagner@...

>

> Robin went to a pediatric allergist today for the first time, and we

learned

> some very interesting things.

>

> They did skin tests for a number of things - she came up positive on milk

and

> eggs (which was expected), and positive on peanuts and rice (which was

not

> expected), and negative on soy (which was very surprising - we KNOW that

she

> reacted to Prosobee). The Doc says that he would consider the rice

reaction

> as a false positive unless confirmed by a high reading on the RAST test

(which

> they took blood for). (Apparently the incidence of true rice allergy is

> extremely low.) He instructed us to stay away from peanuts - he said it

is

> known to be a highly allergic food, and that if the RAST shows high

numbers

> for this, he will prescribe an Epi-pen for Robin.

>

> The Doc indicated that skin and RAST tests are known to be fairly

inaccurate -

> notably only 1 out of 3 positive results is actually a true " positive " .

In

> addition, he said that since the mechanism of allergic reaction is

different

> between the skin or blood and the gastrointestinal tract, that the tests

don't

> really give very good information about what is going on inside her GI

tract.

> That is, she could test negative on both skin and blood tests, but still

have

> a reaction going on inside the GI tract due to some food item. (This is

not

> particularly encouraging news.)

>

> He said that the only way to really confirm the elimination of the

eosinophils

> from the GI tract is by another endoscopy. Levels of eosinophils in the

blood

> are not a good indication of what is going on inside the GI tract, unless

the

> numbers are sky-high. He indicated that at this time he would not

recommend

> another endoscopy, unless Robin starts to head back in the wrong

direction

> again.

>

> We asked him if WE possibly caused her allergic reactions to food due to

early

> introduction of the wrong things, etc., and he said we shouldn't feel

guilty

> at all about this - that she was exposed to all of the allergens while

she was

> breast-fed, through my wife's diet. If we have another child, he said

that he

> would probably recommend a severe restriction of my wife's diet during

breast

> feeding. (It is interesting that my first daughter has apparently no

problems

> with allergies at all, and we didn't do anything special there.)

>

> We learned that the Lactulose that she is on for constipation is actually

a

> milk product, and even though it is supposed to be just sugar and is

SUPPOSED

> to be free of protein, there is no guarantee. So he suggested that we

get the

> GI doc to prescribe something else for her constipation.

>

> We learned that the manufacturer of Neocate has apparently corrected

their

> problem with milk contamination of the juice box variety - the Doc says

that

> the last tests he knows of showed negative for milk protein, so the juice

> boxes are probably OK at this point. (We are not using them at the

moment

> anyway.) We also learned that even though Nutramigen has milk proteins

which

> are broken down into smaller molecules, which for most children eliminate

> eczema type reactions to formula, these smaller molecules are known to

still

> be able to cause upset in the GI tract without causing outward signs -

which

> is consistent with what we observed in Robin's case. The switch to

Neocate

> was the right thing to do.

>

> He told us that the cyproheptadine which we were using as an appetite

> stimulant is actually OK for long-term use, with very little concern. We

will

> put her back on that now. We stopped it on a trial basis to see if it

was the

> switch to Neocate or the cyproheptadine which made a change in her eating

> habits. We did notice that she showed very little appetite after we

stopped

> it. The results while using it were encouraging though. I think the

> improvement is probably a result of a combination of both. He said the

> Neocate is the thing to be on for her right now, and as of yesterday it

looks

> as though we might even get some insurance coverage for it

(HALLELUJAH!!!).

>

> For the time being, it looks like Robin is heading back in the right

> direction. Her weight loss has stopped, and she is starting to eat a few

> things. She is still not taking in the right number of calories yet, but

the

> doctor believes that her fat and protein intake are sufficient.

Hopefully,

> with the change from the Lactulose and the re-starting of the

cyproheptadine,

> and the continuation of the Neocate she will gradually improve on eating.

All

> of the doctors say that a part of her food refusal is behavioral or

> psychological at this point, and that will take a long time to overcome.

But

> for now, it looks like her GI tract might be feeling better. We'll get

the

> new RAST results in a couple of weeks, and I'll keep you posted. Thanks

to

> everyone for the great info and support.

>

>

> Ed (father to Robin, 19 mo. - eosinophilic gastro, allergy to milk, eggs,

soy,

> (peanuts?))

>

>

> ------------------------------------------------------------------------

>

[Guest guest]

We were just told by our GI after about 6 great months with BJ that 2/3 of kids

that get " better " relapse. BJ had to go on a dose of Prednisone 2 weeks ago and

now he is having either lots of diarrhea or distention in his belly.

Dawn

LeeWagner@... wrote:

> From: LeeWagner@...

>

> Well it seems we have had a bit of a relapse with Robin (21 mo - E.G.). She

> was doing great for a while there - actually eating solid foods and gaining

> weight. She is on the Neocate 1+, and avoiding all dairy, soy and eggs.

>

> Well, last Sunday night, she vomited 3 times, then again on Wednesday, then

> Friday was doubled over in pain with stomachache. No fever, and big red

> circles under her eyes.

>

> Called the G.I. doctor, and he said that she was having an attack - sort of

> like an asthma attack, except in the stomach. Anyway, he recommended taking

> her off all solids (Neocate only), going on a course of Prednisone, and then

> re-introducing food slowly and only the things we are sure about.

>

> Well, it is amazing how a child that we practically had to force feed will beg

> to eat when you don't feed her anymore! That was tough. We stuck it out for

> two whole days, and then finally gave in. She seems much better now. She has

> 2 more days on the Prednisone, but no more vomiting or dark circles under the

> eyes. We don't really know what triggered it. The Prednisone looks like it

> makes her a bit more excitable than normal.

>

> Still trying to get insurance to cover the Neocate. A few questions for the

> more experienced members of the group: I see a lot of abbreviations for

> various tubes and procedures used on the list - could anyone provide a

> glossary of the definitions for these things? My heart goes out to those of

> you who are faced with these challenges, and I am grateful for the

> information. Thanks.

>

> Ed

>

> ------------------------------------------------------------------------

>

[Guest guest]

AJ has gone down hill too. I was hoping it was a bug. Diarehha, hives,

whines, cranky, sleeping lots.... Seems like what ever she eats bothers

her. A bad case of Neocate?-since she drinks the juice boxes? Remi is

having surgery next week. Just when I thought AJ was okay, she goes haywire

on us and it couldn't be at a worse time. Not that anytime is great.

Phyllis

[Guest guest]

Phyllis

The National allergy convention was just a few weeks ago and there was

just about unanimous consent that the juice boxes could not be trusted.

Sorry. It cuases a problem for us too.

-- Idiopathic Eosinophilic esophagitis; Mom to 15, IEE,

NIssen/GT; Ken,11, IEE; Korey,7, IEE (NG); Kody, 4, IEE/CIPO. G/JTs;TPN;

Killian,2, IEE (NG); SJHarlow@...

http://www.c4isr.com/harlow

[Guest guest]

Thanks for the info. With Remi going in for surgery Tuesday, i will have to

keep AJ on them until the following week.

Phyllis

Ps. Did you get the flavor packs? Did you like them?? Did any of your kids

like them? I have more.

[Guest guest]

This is what Dr. Sampson's nutritionist told me - and he said keep Clayton off

them - while Dr. said try them - WHAT AM I TO DO. I want Clayton off the

bottle - he onlyh drinks about 6-8 ounces by mouth - BUT he will not drink the

Neocate 1+ in a cup (the powder) so Dr. said try the juice boxes -

Phyllis sent me some BUT I am afraid to give them to him? Any thoughts?

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,

sleep problems, sensory integration disorder and now tremors and suspected

metabolic disorder or genetic disorder, WHEN WILL THIS END)

[Guest guest]

In a message dated 3/29/99 9:44:03 PM Eastern Standard Time,

SJHarlow@... writes:

<< You should ask DR. to check with the NEWEST allergy findings on

the boxes. THere are STILL problems with them.

>>

I will - we are scheduled to see Dr. on 4/27. Until them I am holding

off on the juice boxes.

Good luck with the g-tube surgery's. Is yours being done outpatient?

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,

sleep problems, sensory integration disorder and now tremors and suspected

metabolic disorder or genetic disorder, WHEN WILL THIS END)

[Guest guest]

Sharon-

You should ask DR. to check with the NEWEST allergy findings on

the boxes. THere are STILL problems with them.

IT has been suggested that we actually tube our 11/yo who has been

drinking them just to get the powder into him.

BTW, Korey (7) and Killian (2) get their GTs on Mond, 4/5. I get mine

on Wed 3/31 -keeps in your thoughts and prayers. It s gonna be a roller

coaster ride around here for a few weeks.

-- Idiopathic Eosinophilic esophagitis; Soon to be GT; Mom to

15, IEE, NIssen/GT; Ken,11, IEE (GT soon); Korey,7, IEE (GT soon);

Kody, 4, IEE/CIPO. G/JTs;TPN; Killian,2, IEE (GT soon);

SJHarlow@...

http://www.c4isr.com/harlow

[Guest guest]

Can someone please explain to me the meaning of the following:

GT? Nissen? G/JT? TPN?

Thanks for the help.

Ed