Re: Update on iel

[Guest guest]

Anita,

I checked out iel's pictures and it is difficult to say

whether he has the look. Do you have any photos of him as an infant

and toddler that you could post?

Pattie

>

> 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)

>

[Guest guest]

> >

> > 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)

> >

>