[tri-med] Re: Growth Hormones + tri-14

----- Original Message ----- 
From: "Vicki Christensen" <vchristensen@xxxxxxxxxx>

First off, welcome to another t-14 family!!!!!!!!!   There are so few of us 
around that it's still a surprise to me when another one shows up. lol

We're a motley crew around here of various flavors of trisomy HOWEVER there 
are so many similarities, experiences and issues across the board that we're 
like one big family.
So don't ever discount something because it's related to another trisomy 
flavor. Some people do that and they lose a lot of valuable resourses 
because they only want to talk with those of the same trisomy number.

I'll do a separate post about Alex since this one will be LONG.  lol

> I'm looking for any positive/negative experiences with GHT.

If you are going to take Luke to the endocrinologist I'd recommend a
PEDIATRIC Endocrinologist if possible.
Our first trip to a Ped Endo took us an hour+ from home.

When Alex was 3 he saw a Ped Endo as he'd plateaued with growth for over a
year.
He'd had growth issues from day one (vertical and weight).

They did a test (oh good grief....I'm forgetting the name!!!) called (I
think) Insulin Induced Hypoglycemia Test. This was 1990.

Alex was NPO for over 12 hrs and then they hooked him up to an IV and used
insulin to drop his blood sugar. Then they do blood draws in timed
increments. It was scary because he became lethargic,
unresponsive.........we were told to try and keep him 'awake'. That was a
fun few hours. NOT.

Anyhow, Alex was 'low normal' at that time. The Ped Endo wanted to order
another test when Alex was approx. 5 yrs old, a test that at THAT time
required overnight testing at the hospital and she thought he was too
young/fragile at that time to perform the test.

Additionally, in the late 80's/early 90's, the growth hormones involved
using cadaver hormones (yes, from dead human bodies) This added even more
possible side effects to the treatment if required.And we weren't all that
inclined to put Alex on them,even if testing showed him deficient) so put
the test to the back burner.

By the time Alex was 5 we contacted her office and they were 'out of
business'.

A few more years pass and we decide to explore the Ped Endo option again.
There is now one 25 minutes from home.

They did all the lab testing that existed for the endocrine system (aka the
hormone system). We're talking the hypothalamus, pituitary gland, thyroid
gland, pancreas, adrenal glands, gonads and pineal glands (melatonin is
produced here, we have some triers dealing with that) make up the endocrine
system. There are different tests looking at different hormones produced by
the different glands (could I possibly have used the word 'different'
anymore???).

Things were all 'normal'. Then Alex had the Clonidene/Argenine testing (may
not be the actual name again!!!!!! aaarggghhh) to check for growth hormones.

It was a 5.5 hr in hospital procedure where Alex was hooked to an IV, given
Clonidine, then timed blood draws, given Argenine then timed blood draws, he
became drowsy and went to sleep, which was what he was supposed to do. I
think there were something like 15 blood draws.

This test (in conjunction with the bone age study that showed significant
delays) diagnosed Alex as Growth Hormone Deficient (GHD). This was 1997.

Jim and I then had a decision to make regarding GHT (Growth Hormone
Therapy). It was now a synthetic injection and not cadaver based.
We searched out info, discussed pros and cons, involved the list with many
good discussions (list Mum Karen was a wonderful devils advocate for us at
that time!) and finally decided to go for it.

Alex had a spurt of growth (initially then he grew slowly for a few years)
as well as a spurt of mental growth (gen ed and spec ed teachers both
contacting me separately asking 'what are you doing with Alex???' 2 months
into the GHT).
Alex experienced jumps in reading, comprehension and general ability to pick 
things up faster/better than he had been for all the preceeding years.
This is not to say it was a huge leap but it was signifigant and noticable. 
Alex still had delays/issues and continues to do so to this day.

Our Ped Endo 'poo pooed' the connection saying there was NO correlation. 
However, a few other t-14 parents with kids on GHT  that I was in contact 
with at the time had seen it, as well as list Mum Karen being in contact 
with other t-18 kids on GHT who's parents had seen jumps of growth in other 
areas as well.
Apprently in the trisomy world those children who are GHD and placed on GHT 
see these jumps that the general population doesn't (or aren't aware they're 
seeing perhaps??).
Don't know about anyone who placed their child on GHT while their child did 
NOT have a diagnosis of GHD.

Frankly, to me it seems reasonable that if someone is GHD it affects many 
areas of that individuals growth, not just height and weight.
Growth is growth in all areas!!! One system (the endocrine system in this 
case) being 'off' affects multiple areas. Just seems logical to me.  :0)

Alex remained on the GHT until his bones were showing signs of closing. He 
had been on the GHT for approx. 5 years.
He is now 4' 10" tall and it is very unlikely he'll ever get any taller.

 > Does anyone know how early they can start? Any benefits of waiting?

I wish we'd have started earlier because waiting until Alex was 10 gave us a 
shorter growth wondow before his bones began closing in.
Not sure just how early they do start but it's most likely contingent upon 
receiving a diagnosis of GHD.

>Has anyone had experience with insurance paying/not paying.

With our insurance we had to have two different tests showing the GHD. In 
Alex's case it was the bone age study (an x-ray exam of one picture of both 
wrists/hands) and the outpatient hospial exam testing clonidine/argenine.

There are programs to help those who don't have insurance or their insurance 
won't cover it. The Ped Endocrinologist would have info on that.

At the time Alex started the GHT he requried 3 bottles of the med per month. 
Each vial cost $500.
Insurance did NOT cover the syringes (makes no sense but it only cost us 
something like $24 every 3 months or so).
By the time Alex was done with the GHT he was using 5 vials per day.

We paid our usual prescription co-pay for each months supply.  :-)   Whew!!!

It was shipped UPS from the medical supply company to our door and the med 
supply company did all the billing etc. I just had to send them a check for 
the syringes and co-pay. They did ALL the leg work getting us started with 
the insurance company.

> I have read some emails that the hormones have helped in other areas, but 
> what about side >effects or anything from real life experience I may not 
> hear from the doctor???

We didn't have any issues with side effects, nor did the few people who I 
knew with a t-14 on the GHT have any as well. However, those folks have 
since drifted away and the e-mails etc I have are no longer valid.

You can check out www.magicfoundation.org  It's an organization devoted to 
those with growth issues. You can find a lot of info there about this topic.

Michelle mom to Alex (19, partial trisomy 14 mosaic) and Molly (15)
MichiganUSA 


                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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