[tri-med] Re: GHT

Michelle,

Were you sent to the endocrinologist because of Alex's slow growth?  We have
never seen one before....I never knew there were so many specialist out
there before Sierra:o)

Would intrauterine growth retardation and failure to thrive qualify you to
be involved with "The Magic Foundation"?

I am sorry to hear that things are going rough for Alex (and you) with the
school issue.  I send warm wishes your way that things will start looking
up.  You are probably right....a teenage thing.

Thank you for taking the time to write, I really do appreciate all of the
information I get from everyone here.  Our doctor has never dealt with this
before and I am scared of missing something:o(

Nicole mom to Alyssa 4 (going on 21, keeping me busy, and keeping my hair
from getting to long because I'm pulling it out), Sierra 2.9 years (partial
trisomy 18 q, my brightest ray of sunshine on a gloomy day), Kobey 1 (true
mama's boy through and through, climbing, pinching, and loving), and Joe my
wonderful husband of 8 yrs. (without his support I would be in the funny
farm by now!)
----- Original Message -----
From: "Michelle Waite" <jwaite@xxxxxxxxxxxxx>
To: <tri-med@xxxxxxxxxxxxx>
Sent: Friday, December 12, 2003 6:47 AM
Subject: [tri-med] Re: GHT


>
> ----- Original Message -----
> From: "Nicole Jones" <jones@xxxxxxxx>
>
>
> > What kind of testing do they do to check if your body is producing
enough?
> What >prompts the investigation: slow growth, not maintaining their curve?
>
> Here's our GHT experience.
>
> When Alex was born they missed his trisomy because of the mosaic portion
of
> the diagnosis. So for the next 12 months we went from specialist to
> specialist trying to figure out what was wrong with our baby. One of the
big
> questions was why isn't he growing.
>
> Fast foreword. We have the trisomy dx and am again sent to a pediatric
> endocrinologist. It is shortly before Alex's 3rd birthday (1990). She
orders
> a test. It's done in the office and takes an hour or so. They drop the
blood
> sugar drastically (hypoglycemia). It shows Alex to be borderline deficient
> at that time. She suggests a "longer more difficult in-patient test" to be
> done when he's older.
> This is all about the time they are in the process of switching to
synthetic
> gh and getting away from the gh made from dead bodies. The second type of
gh
> caused some diseases in those using it.
>
> This ped endo quits working and closes her office so we don't go back.
>
> It's now 1997-98. Another tri-14 parent "finds" me via "The Magic
> Foundation" (for those affected with growth disorders). We communicate and
> she leads me here (Joanna mom to Marcus). Marcus was just starting GHT at
> that time. Joanna shares infor with me from the pharmaceutical company,
who
> manufactures GH, showing a study done on 5 individuals with GHD (growth
> hormone deficiency).
> Since that time (after Alex began the GHT) there have been 4 other t-14's
on
> GHT. That's a high number given how rare the t-14 is in my opinion.
>
> This starts the ball rolling again and so off we go finding a ped
> endocrinologist has moved into the area 20 miles from us (previously it
was
> nearly 2 hrs). Make an appt and off we go. He wants to order the longer
test
> the prev endo had discussed.
>
> I had been on this list for a short while when all this started and shared
> our concerns/thoughts about the GHT, pros and cons. Many of you may recall
> this. lol   People were very helpful in sorting things out and Karen
played
> Devils Advocate with me which really helped Jim and I explore just what it
> all meant, how we felt and what it meant/might mean to Alex in the future.
> She'd also pointed out that she knew a large number of tri-18ers who'd
gone
> the GHT route and they not only grew in stature but had jumps in ability.
> Yes, there are some possible side effects to the GHT, one of which is a
rare
> incidence of brain tumor.
>
> So, after many, many hours of discussion, research, more discussion and
soul
> searching Jim and I decided to go ahead with the testing. It was not a
> decision made lightly at all. Just because it was right for Alex, our
> situation doesn't mean it is for everyone. Remember, Alex is a relatively
> healthy child who is mobile, makes decisions for himself etc. This
> definately factored into our decision.
>
> We had also discussed it with Alex sharing what it would mean if he was
GHD
> and HE wanted to see. Alex didn't like the teasing he endured, not being
> able to do things his peers were doing (carnival rides etc), wondering if
> he'd be able to drive, wearing "baby clothes" when his peers were not.
>
> The test is scheduled--Clonidine/Argenine Test. The patient has to be
asleep
> to do the testing as that is when the majority of GH is produced. We are
> told to plan on being there approx. 6 hrs.
>
> We take books, games, videos. We go into a large room with a tv/vcr and
Alex
> gets hooked up to an IV. They take some baseline tests. Then they
administer
> the Clonidine to make Alex sleep. It takes nearly an hour for him to go
> under.
>
> Another baseline is done after he's been asleep a bit.
>
> Then the Argenine is administered. I can't remember the exact intervals,
but
> think it was every 30 min, for 4 hrs so they had 8 blood samples plus the
2
> baselines. Maybe some 15 min intervals........can't remember!
>
> The testing showed a GHD. In addition, Alex's bone age study (one x-ray of
> BOTH hands/wrists) concured the delay. Since Alex was 6 months old he'd
> pretty much had a bone age study done each year. Each time he had 2.5 yrs
or
> more  lag in bone age vs chronological age. Bone age study is generally
the
> first step in identifying a growth problem.
>
> We started with the GHT and it's one shot per day although in Alex's case
he
> got to pick one day "off" per week (had to be the same day) and he chose
> Saturdays for sleepover purposes.
>
>  It is expensive but fortunately our insurance company saw it as a
> prescription for a medically diagnosed condition so we paid our highest
> prescription fee for a "brand name" prescription ($40). When Alex started
> GHT his monthly dose was $2000. As they grow the dose increases (based on
> weight). At the end of treatment his monthly dose cost was $3000. We had
to
> pay out of pocket for syringes.
> At that time there were other avenues for payment if it wasn't covered by
> insurance. "The Magic Foundation" had info on that and I was told that the
> pharmecutical companies often would discount/donate the medication for
> children.
> A home health care company took care of our GH needs. The drs office set
it
> up. The hc company did all the paperwork, made sure it was a covered
benefit
> and then set up ordering/delivery of the GH (it has to be refrigerated).
I'd
> call to place an order (after the drs office faxed a prescription every 4
> months) and it would come to the door.
>
>
> After approx. 6 months or so Alex begain giving himself the injections in
> his legs but we still did the arm sites because he couldn't comfortably
> reach the back of his upper arm. He wasn't comfortable with the abdomen
site
> so we just rotated the legs/arms.
>
> In the first year Alex grew 5 inches. He had NEVER grown 5" before in such
a
> short time in his entire life. He had good growth for a few years.
>
> Here's an interesting aside, 4 weeks after beginning the GHT both Alex's
> spec ed and general ed teachers said to me separetely "WHAT are you doing
> with Alex?". They had SEEN a jump in his reading skills, his general
> academic ability and they wondered what was going on. As I'd mentioned
> above, Karen had said that t-18's were showing signs of developemental
> increases with the GHT. We also saw Alex get "stronger". In his martial
arts
> class, after having nearly 3 yrs where he couldn't peform a full sit-up he
> managed to do it after the GHT (approx. 3-4 months). We could feel it in
his
> arms for sure.
>
> I mentioned this to the ped endo and short of patting me on the head and
> tsk-tsking me said "No relevence to the GHT". Well, I know what WE saw,
what
> another tri-14 parent saw and what Karen's contacts saw. It's crazy, if
> there isn't enough of the growth hormone in the body how can the medical
> profession dismiss that it affects the growth in multiple areas and not
just
> vertical height??????? My own personal feeling.  :0)
>
> Alex's growth slowed each year on the GHT until another bone age study
> showed that his ephysis were closing. Those are what are also called
"growth
> plates"--the open areas at the joint spaces in bones. Because of this the
> GHT was discontinued.
>
> Alex is approx. 54" now. The size of a 10 yr old. Odds are he won't grow
> much more. And this DOES affect Alex. He always gets picked on but
generally
> just lets it go. This year it's really hard for some reason and we're
having
> issues with it (or should I say we're having trouble with ALEX having
issues
> with it). Perhaps a teen thing?
> Add in that at 16 girls are figuring into the equation and they don't
really
> seem to be interested in the "cute" little boy. Alex isn't a happy camper
in
> school right now. We have however curtailed the upper classman who
couldn't
> keep his hands off Alex (holding him up-side down etc) after the principal
> became involved.
>
>
> Whew, this was way longer than I'd anticipated when I sat down to answer.
> Almost an hour and a half of thinking/remembering/writting! lol
>
> Hope this helps.
>
> Michelle mom to Alex (16,partial trisomy 14 mosaic) and Molly (13)
> MichiganUSA
>
>
>                   Building ___ooOOoo__ Rainbows
>                        www.trisomyonline.org
>                   Families Helping Families On-line
>
>

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

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