Olivia's GI Appt. Today

[Guest guest]

Hey all... well we finally had the GI appt. today and I'm quite

pleased for once with the results! Dr. was just great today

and took a shine once again to Olivia. He was pleased that I was a

member of MAGIC and they even have the MAGIC link on their web

site. He was especially pleased about the RSS growth charts that I

brought! Dr was just as concerned as I was that she hasn't gained

weight in 1.5 yrs but has grown in height, her growth chart is all

peaks and valleys, no smooth curve at all. Although I was giving

him info I didn't say everything that I've learned on this listserve

as I wanted to feel him out and see just what he knew (maybe not so

nice of me but some Dr's ego's are bruised so easily if they think

you might know something that they don't). After a bunch of talk

about ketones, hypo-g, and tubes, he suggested using

Cyproheptadine, and I said " Periactin? " . he said " yeah, wow you know

about that? " He seemed happy that I was aware of it! (or maybe he

was happy that he didn't have to explaine it! lol!!) He precscibed

5ml twice a day and I asked about starting very small doses and

ramping them up, I explained why and thought that was a great idea

but I'll need to check one of the previous posts and ask what I

should start her at!! So off we are on another cource and yet

another med. To Jodie, (s mom) I'm happy that we can

start this together since they are starting only a week apart!

He's upped her Zantac from 1.3ml x 2 up to 1.5ml x 2 and we are

to contine with the Senokot as her bowel isn't quite back to size

yet. Had some bloods done just to make sure that the protiens,

iron, calcium etc. are at a good level.

The last part of our day was a Skeletal Survey ( head to toe x-

rays) that the Genetisit had ordered. Made me a little worried as

she's already had upward of 30 x-rays and today she had 19!!! At

least she co-operated and only had to do one retake.

That's about the end of our very long day (left home at 6AM and

got home a 5PM) so I'll sign off here!

Leah Mom to Ash 9yrs, and Olivia 4.5yrs 18lbs, 33 " (lactulose,

senokot, zantac and periactin (soon)