Growth Hormone

March 30, 2000

My two cents on dwarfism and growth hormone...

My son has SED. From the age of 6 months until 12 months of age, his rate

of growth significantly slowed (essentially stopped growing). At his 1 year

checkup, 's pediatrician suggested that we see an Endocrinologist, who

tested his growth hormone levels. tested as growth hormone deficient,

and has now been on Humatrope for 13 months. It is VERY rare for someone

with a skeletal dysplasia to also be growth hormone deficient (they are

unrelated, so you are essentially born with two very rare conditions), and

even if they are, there are risks to taking growth hormone if you have

disproportionate short stature, such as possible exaggeration of

disproportion (hands/feet, or upper/lower body ratio).

's geneticist still does not believe our son is GHD, even with the test

results - I guess there is a lot of variability with the results, and I know

our Endocrinologist wanted to " try " GH to see how it impacted 's

growth... so who knows? All I know is that my son is now growing again at a

normal rate, although I do believe his hands and feet are bigger than they

should be... he wears a size 8 and he is 25 months old!

If you have any detailed questions please email me privately.

Take care,

Laurie, mom to , 25 months SEDc, and Noah 5 months

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January 14, 2002

I wouldn't take growth hormone on ANY bet-- it's

made with freeze-dried bovine pituitary, that's " cow

brains " for the lay folks. And that puts you at risk for

BSE (Bovine Spongiform Encephalitis), more popularly

known as " Mad Cow Disease " . No, freeze-drying or even

boiling won't kill the causative germ because it's not a

bacteria or even a virus, but a " prion " , a very tough and

mysterious customer that you don't want to mess with. Please

don't take GH.

April 9, 2002

Hi Lynn,

It really was amazing that once got to below 5mgs of prednisone a day he started to have some small amount of growth. Unfortunately, in the beginning (of the JRA) we had no idea that it would take us so very long to finally reach that dosage level. Such a struggle! But at least we're finally there. Josh is still taking just 3mgs a day. Not sure if it's considered a medicated remission yet, as he still has some signs ... but nothing at all like as bad as before. This morning, for example, it was just one ankle that was hurting badly. I wondered if maybe he had forgotten to take his PM indomethacin last night but when I checked, it was gone. He sat on the edge of his bed exercising his feet for about 15 minutes and when he finally stood up to walk, it was with just a slight limp. Before, he used to often walk around like a little old man. With a very stiff gait. Today, he could make it down the stairs unaided. So we've gone from the extremes ... to something that's more or less quite manageable.

In the beginning, it was very strange to see one child continue growing normally and to see the other sort of stuck in a time warp. 's arthritis was really bad so the height thing was on the back burner. I wasn't even concerned about it, except for when I was reminded by people's curious comments. It wasn't until he started getting healthier that I even felt the slightest bit worried. When the doctors referred us to the endocrinologist I guess that's when I realized it might be an important issue. And when Josh verbalized his worries that his organs would keep growing larger and his body wouldn't be large enough to accommodate them! (Yikes! Poor little guy.) I started learning more about it, and looking into also the social and emotional consequences of short stature, which still isn't quite as much a problem for girls as it is for boys ... in our present day society.

I thought we had reached a dead end with it, too. So we focused on learning to live with it(short stature) as best we could. When we were buying balloons last week, the cashier asked if we were having a party. Josh said, yup. It's almost my birthday. So the woman said, how old are you going to be? Josh said ... 13. She looked at him, with her mouth open, and said, you're kidding, right? He said no. She said, you look like you're about 6.

Hmmmm .... how does that make a kid feel? Josh said, well, I look young for my age because I have arthritis and my medicines slowed down my growth. So the woman said, oh! I wish I looked younger than my age : ) I've always tried to relate to Josh based on his true age and mentality but I guess for a lot of people, they treat the children as if they were younger. He seems pretty well adjusted but still, seems to be excited now about the prospect of growing closer to his natural potential.

Definitely, I'll keep you posted about how this works out ; )

Aloha,

Georgina

Hi Georgina:I am delighted for Josh - I know he had mixed feelings about it because ofthe needles. Did you get approved for the once a month stuff? I had lookedinto that a while back and somehow reached a dead end. Mickey has kind of aminimal amount of growth and the doctors keep resisting even sending her tothe endocrinologist, they still think we'll be able to get her off theprednisone long enough for her to grow. She did come off of it for about 5weeks last summer, but then flared so badly we're only now getting down to4ml /day. Oh well. I know she's just 8 and there is time yet... but, wellmaybe its more my hang-up than hers.I am very excited and happy for Josh, though! I'm sure you'll be keepingeveryone posted on the results, and I hope they're as good as all thestudies we've read! That is so cool!Lynn

April 10, 2002

Georgina-

Poor Josh. It made me so sad to hear he was worried about his organs growing too big for his body. And to have someone tell him he looked like he was 6 --- that's got to be tough for him. Especially when he's getting to the age where being cool is so important. Too much to worry about for someone his age. I really hope the growth hormone does the trick.

Diane

April 11, 2002

Hi Georgina:

People can be amazingly insensitive, can't they? I cringe sometimes,

wondering if I had ever been that out of tune with kids (before I had some

of my own), to not realize how some comments sound, how they might hurt a

kid. And then being the parent of a child with a chronic illness, and its

attendant difficulties, it certainly does " tune up " one's sensitivity dial!

I try too, to talk to Mickey about how some people, who have never had a

difficulty, just can't imagine how something might feel, or sound. That its

really hard sometimes for others to know... they don't mean to hurt your

feelings, but they do. And she too feels free to explain - sometimes.

Sometimes she just doesn't want to bother. She says her arthritis is her

business. Sometimes people have commented that they think she is much

younger than she is... until she opens her mouth and talks! I know I sound

like a bragging mother, but she is very articulate and more than able to

describe her disease, and her meds, and their complications - when she wants

to!

Mickey's story is much like Josh's, though we've had a bit more growth, when

we had that amazing 5 weeks or so when she was off prednisone last summer.

She had been easing down for months from 3mg/day, which her doc's all said

was kind of a 'threshold' dosage for someone her size/weight to have some

growth. And in fact, in that low taper period and while she was off

prednisone, she grew about 2 inches. We're just recently down to 3mg/day

again after a year of high doses following the flare she had mid summer last

year. Like you, I had no idea it would take so long - or be so nearly

impossible to ever get her off the prednisone. But, thankfully, she does get

fairly good symptomatic relief from the meds.

Her younger sister, by 2 1/2 years, passed Mickey in height this past year,

and that was a hard one for Mickey. She commented on it to me just this

morning again, so it was interesting to get your email. She said she knows

its because of the arthritis and because of the meds... but she said she

still didn't like how it felt, to have people think she is the younger

sister. Or to have hand me downs from her younger sister! Kinsey is about 3

inches taller now, and 8 pounds heavier, Mickey wears a size 6, - and

Kinsey is a 7. Mickey's shoes are size 11 - Kins is in a 1. I know it

shouldn't matter, to me, least of all. But I remember when they were babies,

and Mickey was in the 95th percentile for height until she was 3, Kinsey

only in the 50th. At 3, Mickey was in a size 5. She can still wear some of

those clothes!

You mentioned you didn't even start to worry about the lack of growth until

Josh's symptoms were under control (more or less), and I guess that's true,

too. It was the least of our worries for a long time. But I do notice that

people treat her as if she is much younger than her true age, and I worry

how that will affect her self image, too. I've recently found a play

therapist, someone local, miracle of miracles! - and Mickey starts seeing

her next week. As much as Mickey can talk to me about most things, I think

she still needs to have someone else she can talk to, vent with - things she

feels she needs to 'protect' me from, or things she worries will upset me...

Well, I've gone on way to long again. The kids have both had colds and flu's

in turn here, so its been a while since I could log on long enough to

respond to anything.

Lynn

April 17, 2002

Hi Georgina,

I am so pleased that things are going well for Josh (a belated happy birthday to

Josh - I am so behind these days!) I am glad the nurses made a big deal about

his birthday. I thought it really insensitive of the woman with the balloons

(No 13 yr old wants to be told they look 6!) But hurrah for Josh and his mature

response! You are doing a terrific job! I worry about Rob's growth (he is 37

inches now - grown about an inch this year - so I guess I can't complain) - but

I am concerned about the longterm.

Take care!

Val

Rob's Mom (4,systemic)

In a message dated Tue, 9 Apr 2002 7:00:23 PM Eastern Daylight Time, " Georgina "

<gmckin@...> writes:

>Hi Lynn,

>

>It really was amazing that once got to below 5mgs of prednisone a day he

started to have some small amount of growth. Unfortunately, in the beginning (of

the JRA) we had no idea that it would take us so very long to finally reach that

dosage level. Such a struggle! But at least we're finally there. Josh is still

taking just 3mgs a day. Not sure if it's considered a medicated remission yet,

as he still has some signs ... but nothing at all like as bad as before. This

morning, for example, it was just one ankle that was hurting badly. I wondered

if maybe he had forgotten to take his PM indomethacin last night but when I

checked, it was gone. He sat on the edge of his bed exercising his feet for

about 15 minutes and when he finally stood up to walk, it was with just a slight

limp. Before, he used to often walk around like a little old man. With a very

stiff gait. Today, he could make it down the stairs unaided. So we've gone from

the extremes ... to something that's more or less quite manageable.

>

>In the beginning, it was very strange to see one child continue growing

normally and to see the other sort of stuck in a time warp. 's arthritis

was really bad so the height thing was on the back burner. I wasn't even

concerned about it, except for when I was reminded by people's curious comments.

It wasn't until he started getting healthier that I even felt the slightest bit

worried. When the doctors referred us to the endocrinologist I guess that's when

I realized it might be an important issue. And when Josh verbalized his worries

that his organs would keep growing larger and his body wouldn't be large enough

to accommodate them! (Yikes! Poor little guy.) I started learning more about it,

and looking into also the social and emotional consequences of short stature,

which still isn't quite as much a problem for girls as it is for boys ... in our

present day society.

>

>I thought we had reached a dead end with it, too. So we focused on learning to

live with it(short stature) as best we could. When we were buying balloons last

week, the cashier asked if we were having a party. Josh said, yup. It's almost

my birthday. So the woman said, how old are you going to be? Josh said ... 13.

She looked at him, with her mouth open, and said, you're kidding, right? He said

no. She said, you look like you're about 6.

>

>Hmmmm .... how does that make a kid feel? Josh said, well, I look young for my

age because I have arthritis and my medicines slowed down my growth. So the

woman said, oh! I wish I looked younger than my age : ) I've always tried to

relate to Josh based on his true age and mentality but I guess for a lot of

people, they treat the children as if they were younger. He seems pretty well

adjusted but still, seems to be excited now about the prospect of growing closer

to his natural potential.

>

>Definitely, I'll keep you posted about how this works out ; )

>

>Aloha,

>Georgina

> Hi Georgina:

> I am delighted for Josh - I know he had mixed feelings about it because of

> the needles. Did you get approved for the once a month stuff? I had looked

> into that a while back and somehow reached a dead end. Mickey has kind of a

> minimal amount of growth and the doctors keep resisting even sending her to

> the endocrinologist, they still think we'll be able to get her off the

> prednisone long enough for her to grow. She did come off of it for about 5

> weeks last summer, but then flared so badly we're only now getting down to

> 4ml /day. Oh well. I know she's just 8 and there is time yet... but, well

> maybe its more my hang-up than hers.

>

> I am very excited and happy for Josh, though! I'm sure you'll be keeping

> everyone posted on the results, and I hope they're as good as all the

> studies we've read! That is so cool!

>

> Lynn

>

April 17, 2002

Hi Diane,

Josh will be getting his first injection this Friday. He's excited about it, even though he understands that these injections may be somewhat more uncomfortable than his MTX shots. The suspension is thick and milky so you need to use a larger needle than the ones that are used for daily growth hormone injections or insulin. People had mentioned a pen injector or something like that, to give the shots automatically? We can't use one of those.

Less stinging if we wait till after the alcohol is dried, from cleaning the injection site, so he thinks that maybe that's why his MTX injections hurt/sting him like they do? The nurses who do his MTX usually just clean and jab. Since Josh likes to get it over with as quickly as possible. I think he'll want to wait longer till the alcohol dries, before getting that done from now on, too. He learned that little tip while watching the Growth Hormone Therapy video that came with the package.

They do say that kids sometimes have unrealistic fears. That his organs might grow too big for his small body was something I had never even thought of. We talked about basically everything, or so I thought, relating to his small stature. I guess I was focused more on the social issues and the accessibility issues. I was glad he mentioned that fear, because it is something that could be really scary ... if you ponder it. We asked the doctor about it and he relaxed, learning that growth of organs would be slowed as well. They wouldn't keep growing at a regular rate. We've just found out that growth hormone will increase both skeletal growth and the rate of growth of his internal organs.

I'll let you guys know how it goes.

Aloha,

Georgina

----- Original Message -----

From: dbornscheu@...

Poor Josh. It made me so sad to hear he was worried about his organs growing too big for his body. And to have someone tell him he looked like he was 6 --- that's got to be tough for him. Especially when he's getting to the age where being cool is so important. Too much to worry about for someone his age. I really hope the growth hormone does the trick. Diane

September 4, 2002

Hi ,

Our daughter doesn't need growth hormone but I was reading our policy looking for something else and read that the other day. Group Health (our carrier) will pay after you have been covered by them for 12 consecutive months and with proof of medical need (you know, letter from doc) Hope yours will too. Oh my son's neurologist told me that if something hits a block and you still don't get through after an appeal. you need to appeal 3 times, the insurance company will usually cave. Perserverance gets the treatment. Good luck to you.

e, mom to joe 15yo poly

snooksmama89 wrote:

Hello all...Rob's pediatric endocrinologist called today. His bone age is 11-1/2 years old (he is 13 yrs and 4 months old). So when she correlates the data with his dexascan, his bone density is not as bad as we had thought. They had thought his bone density was 60% of what it should be, or osteoporotic. Now they say he is osteopenic. SO that was good news.Also, his level of IGF was low (growth hormone). He is to have a growth hormone stimulation test next wednesday to see if he would benefit from growth hormone.I called our insurance company, and they wouldn't say if they would pay for it (the growth hormone injections). They said that the doctor would need to submit a letter and then they would consider it.Does anybody know how expensive it is? Has anybody had any luck getting their insurer to pay for it? Feel free to email me privately. Thanks. (snooksmama@...) and Rob 13 jas

July 27, 2003

That's true ;

HGH and dessicated cow brains does not absorb via mouth tissue or

stomach. Some " HGH " is simply heavily diluted but they call it

" homeopathic " .

That's why the anti-aging specialists use SomaLife amino acids, and if

that fails, HGH shots.

HGH will not do anything to the growth of Candida.

Duncan Crow

>

> I just ordered HGH. Should have ordered Soma Life, ummm.....would HGH

> increase or decrease any candida in my body? I am also currently taking

> ThreeLac which is doing great ! just wondered about whether you believe

> HGH would conflict the progress I'm making w/the candida, in your opinion

>

October 26, 2006

One member of the list pointed out to me that I didn't differentiate well,

the difference between having familial short stature and being actually growth

hormone deficient. She meant to post to the list but sent it to me, which

we've all done, right? She has some good insights and I encouraged her to

post, but her copy has disappeared into the cosmos (I've experience that too),

so she's asked me to pass along her post:

Kim's mom didn't say she was growth hormone deficient. Certainly if

a child is deficient in anything, it should be supplemented. If a

child is growth hormone deficient, he/she will need to take the

hormone their entire life, not just during the growing years. As

stated, there are other health reasons a deficient growth hormone

person needs to take it. I think the issue in this particular

situation is that she is small and appears to be genetically so.

The question then is, should children who are genetically small,

without deficiencies, be given growth hormone? Doing so won't

change their genetic make-up. They may or may not grow and the long

term effects are unknown. Then where do we stop? The next

generation will inherit the same genes and perhaps be smaller

than " normal " . Do we give them growth hormones also? So, what does

that do to the distribution curve. It will move and the " average "

height will be taller. There will always be someone on the lower

end, that's why it's called a distribution curve. My daughter has

Mosaic Syndrome. She is 4'8 and we did not give her growth

hormone. Syndrome girls are not deficient in growth hormone.

They are merely missing a component of their chromosomes that

supports growth. My daughter is not deficient and too much of

anything is just as bad as too little. I just don't think growth

hormone for healthy non-deficient children is the answer. We are

conforming to a society that says we have to be a certain way to be

accepted.

October 27, 2006

good points Ruth!

Myself, an adult with gh deficiency ( HYPO PITUITARY DWARFISM) has taken gh

since 4 years old, yes you do take it most of your life. i am currently taking

it as an adult as i need some the hormones for longevity. i am now 44 and do not

regret my parents putting me on it then, but am tankful there is traetment out

there now and then. i feel better with it now and look much younger then i am. I

did get to 4'9'' and am proportionate in size. but i am happy with my size and

thankful for my parents and the doctors at s Hopkins.

If anyone has any questions or needs suppot. please email me.

Weiss / AKA shortclown@...

re: growth hormone