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Sheryl

Ask your endo (or his nurse) about " compassionate " programs. Many of the

drug companies will offer the GH to families for free; as long as the child

needs it. Then you can continue to fight the insurance with their help. It

is unbelievably expensive. I am in Toronto (so this is in Canadian funds)

but our GH costs $1600.00 for a box of 6 vials. And my son goes through one

vial every 3 days. So one box lasts us 18 days. That would be impossible to

pay for, even if we were independently wealthy!

See what your endo can do for you!

Take care and let us know how it goes

Debby

ght question

> hi everyone , the insurance comp tld me today that they do not cover ght ,

> asked them if ordered by Dr. and was a necessity , they sd no . tt Endo

> group and they sd they wld fight it and see what the outcome is . My

> question is someone told me some drug companies will offer an offset if

> you have to pay it yourself. I know alot of you have sd only way to

> promote growth in these children , I know I will have to pay it , if it

> comes down to it , to benefit koda . Anyone have any advise.

> Sheryl, Dakoda's mom , sga

>

>

> ---------------------------------

> Start your day with Yahoo! - make it your home page

>

>

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Hi Sheryl,

Okay, I think you have the law on your side. The FDA approved the use

of GHT for children who are ideopathically growth deficient. In other

words, even if GHT levels appear okay. Here is where your Ped Endo

must absolutely FIGHT for you. I had to also fight, even with Dr.H.

helping me.

1. Get the name of your case manager. You must speak only with the

case manager.

2. Get her fax number.

3. Fax her photos and a summary of RSS.

4. Keep insisting!!!!! Keep faxing!!!

5. We have lots of articles in the MAGIC database that shows how GHT

helps RSS kids. In fact, the very latest article, H-108, is

entitled, " Silver Syndrome as an indication for GHT " .

Katy

> hi everyone , the insurance comp tld me today that they do not cover

ght , asked them if ordered by Dr. and was a necessity , they sd no .

tt Endo group and they sd they wld fight it and see what the outcome

is . My question is someone told me some drug companies will offer an

offset if you have to pay it yourself. I know alot of you have sd only

way to promote growth in these children , I know I will have to pay

it , if it comes down to it , to benefit koda . Anyone have any advise.

> Sheryl, Dakoda's mom , sga

>

>

> ---------------------------------

> Start your day with Yahoo! - make it your home page

>

>

Link to comment
Share on other sites

Guest guest

Thank you , I will and let you know.

" Debby B. " wrote:

Sheryl

Ask your endo (or his nurse) about " compassionate " programs. Many of the

drug companies will offer the GH to families for free; as long as the child

needs it. Then you can continue to fight the insurance with their help. It

is unbelievably expensive. I am in Toronto (so this is in Canadian funds)

but our GH costs $1600.00 for a box of 6 vials. And my son goes through one

vial every 3 days. So one box lasts us 18 days. That would be impossible to

pay for, even if we were independently wealthy!

See what your endo can do for you!

Take care and let us know how it goes

Debby

ght question

> hi everyone , the insurance comp tld me today that they do not cover ght ,

> asked them if ordered by Dr. and was a necessity , they sd no . tt Endo

> group and they sd they wld fight it and see what the outcome is . My

> question is someone told me some drug companies will offer an offset if

> you have to pay it yourself. I know alot of you have sd only way to

> promote growth in these children , I know I will have to pay it , if it

> comes down to it , to benefit koda . Anyone have any advise.

> Sheryl, Dakoda's mom , sga

>

>

> ---------------------------------

> Start your day with Yahoo! - make it your home page

>

>

Link to comment
Share on other sites

Guest guest

Thank you Katy, I will , we had neurologist appt. today and he stated Dakoda

besides other problems also had ocd, but it is mild, but acourse everything with

him Dr's sy it is mild. so he put him on aderral, I hope you spell it like that

, because I tld him I didn't like side with stattera. hoping it helps. He also

lost down to 30#'s, even were feeding him more often. waiting for articles from

magic to take to endo, maybe he will try to corespond with Dr. H . They're very

arrogant Drs. here , who think you don't trust them when you bring up her

instrutions. but I'm determined to make them listen. It's not like they help him

with gaining and so forth. They told me today when i was upset he lost weight ,

well he appears healthy. I want to scream yes if he was three, and didn't have

to almost forcefeed him. so we will see what happens. Thanks for listening, I'm

just frustrated and husband just doesnt know enough about it to know what's

going on , or willing to take the time to know.

Sheryl

s

katyudine wrote:

Hi Sheryl,

Okay, I think you have the law on your side. The FDA approved the use

of GHT for children who are ideopathically growth deficient. In other

words, even if GHT levels appear okay. Here is where your Ped Endo

must absolutely FIGHT for you. I had to also fight, even with Dr.H.

helping me.

1. Get the name of your case manager. You must speak only with the

case manager.

2. Get her fax number.

3. Fax her photos and a summary of RSS.

4. Keep insisting!!!!! Keep faxing!!!

5. We have lots of articles in the MAGIC database that shows how GHT

helps RSS kids. In fact, the very latest article, H-108, is

entitled, " Silver Syndrome as an indication for GHT " .

Katy

> hi everyone , the insurance comp tld me today that they do not cover

ght , asked them if ordered by Dr. and was a necessity , they sd no .

tt Endo group and they sd they wld fight it and see what the outcome

is . My question is someone told me some drug companies will offer an

offset if you have to pay it yourself. I know alot of you have sd only

way to promote growth in these children , I know I will have to pay

it , if it comes down to it , to benefit koda . Anyone have any advise.

> Sheryl, Dakoda's mom , sga

>

>

> ---------------------------------

> Start your day with Yahoo! - make it your home page

>

>

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