Michele Westmaas Re: Eye and Endocrinology appt results

[Guest guest]

Dear Michele-

My heart is with you on all issues ! )

As for the growth hormone replacement therapy, first CONGRATULATIONS that Aubrie

is ON the growth curve!!!! fell off as an infant and never made it back

) I am about 5'4 " and my husband about 5'11 " . Both of us were late to

puberty (I did most of my growing from 15 to 19, and I was 4''9 " from age 9 to

about age 14 - so I went from a little tall to very very short). 's two

younger brothers are 15 years old and at the 10th percentile and 13 years old

and at the 25th percentile. Both are still Tanner scale 1 ( is at 3 !!!

Hurrah ?), and at a recent pediatric appointment our beloved ped noted that the

youngest is primed to hit puberty before our middle son!

Our endocrinologist decided to put on a trial of growth hormone

replacement therapy because he had grown very little for about three years. Up

until he was eight he sort of held a weak parallel to the growth curve once he

was past the infant/toddler illnesses. Then he flattened out completely. He

showed low hormone on the single blood draw, but showed sufficient hormone

production on the sedated long series blood draws. Then he had to be cleared by

various specialists to make sure no other factor was at play in preventing his

growth. As a result he saw the urologist, had an orchiopexy, was cleared by the

pulmonologist and cardiologist. The clearing of third variable factors,

re-testing, approval for a trial series and all took about one year. Then we

started a six month trial for " idiopathic " (without a measurable cause) growth

hormone deficiency. He has been on the injections for four years and has grown

one foot! He actually has not grown the last four months though, but part of

that is the development in his kyphosis/scoliosis. He's growing, it's just all

inside the brace (arrrgh.....)

I am still a little conflicted about the growth he does get. Is it growth he

would have had if everything worked well, or is it growth we are creating? I

always thought it was the former, but he has " typical " growth hormone

replacement hands and feet - meaning the concentration of so many bones in a

small area look particularity lanky - like President Lincoln - and not like our

family.... Labrador puppy paws I call them - but I do notice it across the board

among those I meet who have had replacement treatment. If it causes not normal

growth in hands and feet , then does it aggravate the scoliosis? I had been led

to believe it accelerates the time frame of the scoliosis because the growth is

accelerated... but now I just don't know... let's globalize that, I don't know

anything anymore ;o)

Hope this helps-

best,

yuka

Eye and Endocrinology appt results

Moving on to growth - she's following the curve between 5-10%ile. Very

awesome considering it took her years to get on the curve! She's outgrown

clothes like crazy this year, is starting to have a bit of a belly, and even

has some muscles in her thighs! The dr said she very well could be growth

hormone deficient but is doing well enough because she has tall parents.

Even though she is always the smallest one in her age group, Aubrie doesn't

mind her size at all. In fact, it's a good thing right now since it sort of

fits with her motor skill maturity. So the dr doesn't think it's time to

consider GHT. But I know there are benefits to GHT besides the actual

growth. There are also disadvantages and side-effects. I'm fine with not

pursuing it now. But I'm interested in any opinions from those of you with

experience just to be sure we're doing the right thing by not doing

anything. I also plan to run it by Kirk at the conference. Any

thoughts?

Thanks!

Michele W

Aubrie's mom 9 yrs

.

[Guest guest]

Yuka-

I'm with you - the more I know, the more I realize I don't know! Thanks for

sharing the full story of 's experience. The endo will continue to

monitor Aubrie's growth twice/yr to watch for plateaus or losses. If she

continues to move forward on her own, then I think we're safe to leave

things alone. I also worry about increasing scoliosis with rapid artificial

growth.

Thanks again-

Michele