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Robin Update

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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

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