Robin Update

[Guest guest]

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?))