Re: update- kyla G.I. today -

June 16, 2005

Hi ,

Sorry to hear that you have such a long day, with " bad " news as the end

result. That only makes everything feel worse!

I think that you'll find that once you get her bowels moving again, she'll

gain weight more easily. Dr H insisted that Bran have at least one BM daily.

She wouldn't accept once every other day. She said that just isn't enough.

If you play with the Mirilax, you'll find the right dose. We started with a

capful nightly, which gave Bran diarrhea, but have slowly weaned it back to

about 1/2 a capful to get the desired results. We've also found that mixing

it with water, and giving it all in one dose, has worked much better for

Bran, then mixing it with the formula. Dr H told us to just add it to his

nighttime formula bag, and allow it to run in overnight, but getting it all

in at once seems to work better. We do have the advantage of putting it down

his g-tube, instead of having to get him to take it orally, so I don't know

how that would work for you.

Expecting a weight gain of 10# in 41 days is, in my opinion, a totally

unrealistic proposition from your GI. I don't think a " normal " child could

do that, let alone a child with RSS, but I guess stranger things have

happened.

I think you have an advantage with being able to go to the convention BEFORE

you have to make this all important decision. You'll have the chance to see

Dr H, and get her opinion first.

As far as the vomiting goes, have you found the source of her migraines???

My daughter Kaitlyn has suffered from migraines since about the age of 5 yrs

old. We found that certain foods would trigger her headaches, as well as

certain environmental factors. Not eating, or not eating enough, would also

set off Kaity's migraines. Is your daughter on any meds for this?? Something

you might want to look into. If you can stop the migraines, and vomiting,

you might be able to increase her weight gain.

If in the end, you have to do the g-tube, know that it's not the end of the

world. As I'm sure you've seen, here on the list serve, several people have

opted for g-tube feeds, mainly supplementally done at night, and have had

wonderful results. Kearns could speak on this!

Hope this helps

Pat (g-ma to , RSS, 3 yrs 5 months old, 23#, 33 " , G-tube, GHT)

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