URGENT: re height as an inconvenience

[Guest guest]

Eileen - I hate to go back and forth, but since 400 other families

are reading this, I have to correct you. ALL of the studies in the

last 5-8 years have shown that GH DOES increase final adult height

in RSS and short SGA children. In fact, a large meta-analysis was

just published that actually analyzed all of the various studies and

said the same thing. THis is why the FDA in the United States

eventually just approved GH for the treatment of short SGA children -

- because it DOES improve final adult height. This does not mean

that GH is the right treatment for every RSS child, but GH does

increase final adult height in the vast majority of patients.

I have copies of all of these articles in the MAGIC library. I

would encourage you to please, please read these articles. It is

very scary when misinformation is posted here on the listserve, so I

want to make sure that you do have the most recent information.

Second of all, the most recent studies have shown that GH does NOT

bring about an increased risk of diabetes in adult life, or an

increased risk of heart problems and high blood pressure.

Absolutely incorrect. In fact, I am going through all the studies

from the last 20 years and I can not find any study that said this.

Do you have a study that showed this that maybe I don't have?

It is well recognized that GH can induce insulin resistance in the

child while they are on GH, by antagonising the effect of insulin on

glucose metabolism. This is why your pediatric endocrinologist will

do yearly blood tests to monitor everything if your child is on GH.

However, several recent studies finally examined the big question,

does this problem continue after the GH is discontinued? And the

answer was a resounding NO. Fasting glucose levels returned to pre-

treatment levels after discontinuation of GH therapy.

Now, you are 100% correct that RSS children have an increased risk

of insulin resistance, cardiovascular issues and high blood

pressure. But this is the result of being born SGA (small for

gestational age). Refer to the massive English study done by Barker

et al. But this has nothing to do with growth hormone treatment and

everything to do with being born SGA.

I absolutely agree with you that there are far worse things to worry

about than RSS. I thank God every day that had RSS not

cystic fibrosis, or a metabolic disorder, all things they originally

thought she had. When they told us she had RSS, we read about it

and said " whew. "

I don't believe that staying up on the most recent research is

dwelling on the negatives. Because RSS is so rare, new studies are

literally coming out every 6 months. 3 years ago, doctors used to

encourage RSS kids to have a weight for height of 50%'tile. Now

with the knowledge that our children are at an increased risk for

insulin resistance because of their birth weight, the recommendation

is now 15-25th%'tile!!! This is why the MAGIC convention is so

important. To my knowledge, it is the only convention for RSS

families (I know you said you went to conventions, were they for RSS

families?)

I absolutely support you in how you are choosing to raise your

child. But I have to step in when misinformation is being posted on

this listserve. There are too many new families who may read it and

be misinformed. Sorry!

Salem

> -Thankyou for your email.Studies have shown that although

> gh can show encouraging growth in childhood it has little effect

on

> adult height in RSS children.GH can possibly bring about an

> increased risk of diabetes in adult life as well as an increased

> risk of heart problems and high blood pressure.I have spoken to

RSS

> adults on this site (some who are overweight as I am myself!) and

> they are very positive about themselves . I have been to

conventions

> and I have been through all the angst associated with being the

> parent of an RSS child.I have come out of that and tho ' I have

the

> odd worry there is nothing to feel desperate about! Our children

do

> not have a life threatening condition thank goodness...and I'm

well

> aware of possible pregnancy problems. But there are so many much

> worse things our children could have!I am positive about my

> child ...I try not to dwell on the negatives. .