Endo visit/GH/ Assymetry/Advice needed

[Guest guest]

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

[Guest guest]

Saundra - I would say that according to the orthos I have spoken to,

and endos with a lot of experience with RSS kids, and the only study

that has been published on this subject, that your endo is mistaken -

- with regards to GHT affecting/exaggerating asymmetry.

The only study that I have found that is specifically on this

subject is article #H-47 in the MAGIC Library. Here is the info:

Title: " Growth Hormone Treatment Does Not Alter Lower Limb Asymmetry

in Children with -Silver Syndrome "

Authors: Rizzo, Traggiai, & Stanhope

Publication: Hormone Research 2001; 56:114-116

Study Results: Study of 7 RSS children with lower limb asymmetry.

After 3 years of GHT, found signif. increase in height with no

signif. change in assymetry

This same anecdotal evidence of no change in asymmetry has been

talked about in other published studies on growth hormone and RSS

kids, but was not specifically studied.

One of these authors, Stanhope, will be speaking at our convention

this summer!!!

Secondly, your endo is also incorrect about insurance companies not

paying for growth hormone based on his growth velocity. It is a

difficult process that is for sure. But what they look at is

whether or not your child is GAINING in their velocity.

The " normal " 4-year-old child, for example, might grow 2 inches in a

year. Your child might be WAY below the growth charts, and also

growing 2 inches a year. So the doctor says " well, they are growing

at a good rate " -- well, if they continued at that rate, they would

never have catch up growth and would end up being 4'6 " as a girl,

for example.

This is why the FDA approved the use of growth hormone therapy for

children diagnosed with RSS or with idiopathic short SGA with IUGR.

Sadly, it is the other children that will have the most difficulty

getting GHT covered.

Everyone, remember that if your child genetically was supposed to be

short because his or her parents are short, NO amount of GHT is

going to make them much taller (studies found 0-1 " maximum gain in

height). Yes, there are still parents with money and weird ethics

that want a Jordan son and will try anything.

GHT works on children who were supposed to be a certain height based

on their parents, but for whom either intrauterine or genetic

problems have occurred. IUGR. RSS. s. etc.

I hope that this helps explain some things. 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