Update on iel

February 24, 2006

Well it's been awhile since I've posted. iel did have his visit

with the geneticist. It was quite frustrating. He only saw him for

about 10 minutes ( because he had a meeting) and he didn't even have

his chart with him. So needless to say he had no reference point for

our situation. He then left me with the student and the genetic

counselor. Before he walked out the room I said hey what about what

you think about him & Silver syndrome? His reply was why, are

you planning on having more kids? I said I don't know but I would

still like to know. He then said let's wait for the GH stim test

results. I was infuriated because those results are already back and

in his chart, if he would have waited til the counselor brung his

chart he would have been able to see that. I attempted to address all

my questions and concerns with the counselor and med student but all

they could say was that's a good question you need to ask the doctor

about that( I thought that was what I came for!!LOL). She did however

say that she did not think he had it but she recomended a UPD7 test.

She also said that the Geneticist wants a complete optical/visual

exam done and results sent to him. I don't know what for. I am

starting to feel like they are having me come in for no reason to get

the insurance to pay for these visits. Otherwise why are they

prolonging telling me anything? We will see the Endo next month and

will probably begin GHT since he apparently isn't growing much. She

wnats us to see the Geneticist that works with her at the children's

hospital before we see her as well. At this point after following

this listserve and getting to know a whole lot about RSS I really

don't feel he has the look, even though he has some characteristics.

I however will still use the listserve as the recipes are great for

weight gain, and much of the other issues you all deal with we do as

well. Thank you all so much I mean it heartfeltedly, for all the

support and for listening when noone else does. I will let you all

know when we get a final diagnosis. Anita ( mom to iel 7y.o.

34lbs, 105.1cm)

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