Re: Saundra - one other thing

[Guest guest]

Saundra - one other thing, in rereading my post to you. You may

have an insurance company that balks at paying for GH if your child

is growing 2 inches a year -- I didn't mean that they might not give

that as an initial answer. However, and this is a difficult

process, you would undoubtedly eventually win in an appeals process

based on the FDA ruling, current studies, etc.

However, this requires you to have an endocrinologist who is

familiar with the process and familiar with the SGA studies.

There are multiple major children's hospitals/endocrinologists in

about 12-15 locations across the US that all participated in the

Pharmacia SGA study. If any of you are having major trouble, I

might suggest that you travel to the closest one of these physicians

and see them. I have the list and anyone can email me privately.

These physicians may not have a lot of experience with RSS, but they

will have a lot of experience with growth hormone therapy and SGA

children.

My private email address is: magicrss@ mindspring.com.

Salem

> > Hi All,

> > I took Braeden in last week to see his endo. He measured 28 1/2

> > inches and is 21 pounds (He is almost 21 months old). His

> assymetry

> > is quite noticeable. He is 1 1/2 inch shorter on his left side

> than

> > his right. When I asked our endo about starting GHT in the fall

> he

> > didn't think GHT would work for Braeden because he said the GHT

> will

> > increase the difference in his assymetry. Has anyone heard of

> such

> > a thing? He also thought the insurance company wouldn't cover

the

> > GHT because Braeden IS growing but, he isn't even on the growth

> > charts at this point? I wish I could get a second oppinion but,

> > pediatric endo's are in short supply here. We have had a few

> > appointments scheduled in the past with DR. H but, always ended

up

> > cancelling because of Braeden's hospitilizations. Although,

knock

> > on wood. He is getting much stronger and he hasn't been in the

> > hospital since March. So, perhaps we should make the trip back

> east

> > to see her.

> >

> > Any thoughts or experiences would be greatly appreciated.

> >

> > Thank You!

> >

> > Saundra Mom to Braeden (RSS) and Delaney 21 month twins