Re: Growth Hormone Testing

[Guest guest]

Carin,

My son Mark was on Clonidine as sort of a replacement for

Ritalin. He did seem to have an increased appetite when on it and a weight

gain. HE has been off about 2/3 of a year and has lost 12 lbs. I find your

article very interesting. Mark is 19 and about 5' 3/12 and weighs 120. He is

developmentally delayed and non verbal. He is showing some signs of going

into puberty but is still very small in the male area. Let me know how you

make out.

[Guest guest]

i was told that, as alex does not test growth hormone deficient, that giving

him these hormones wouldn't do anything. (by endocrinologist at UCLA and

our ped) Also if you give them it can make their bone plates fuse, which

limits chance for future growth. Hope we are doing the right thing, he is

growing but still very small for age 15. Barbra mousouris

Growth Hormone Testing

> My daughter Karlee had the growth hormone test, using clonodine in October

2001. She had a PDA repaired at 9 months, but had no other problems with

her heart. The medication made her sleepy during the test, but really did

not seem to bother her otherwise. The test did not show her hormone

deficient. The doctor convinced the insurance company that because of her

small size and delayed bone age that she should still have the growth

hormone. She has had the injections for a year now. She has grown but she

has had trouble keeping up her weight. (She had a g-button until Sept. when

it was removed because it was causing other problems) Her oral intake is

just good enough to keep her going, but not to make any big gains.

>

> In Feb. 2002 she developed an eye twitch - just overnight it appeared.

The treatment for the twitch is a low dosage of clonodine. Her eyes would

actually roll back in her head so that she couln't even read. On the

clonodine it is much improved.

>

> from IL (Karlee 14 1/2)

>

>

>

>

[Guest guest]

In a message dated 10/12/2002 20:43:24 GMT Standard Time,

ldmyers@... writes:

> Kids with CHARGE tend to crash when we do this

> > test. " This is due to the fact that CHARGE kids tend to have heart

> > problems.

This was true with my Jack. He crashed when hehad GH tests and at that point

his heart was not repaired. The endo did not think it was heart related. Jack

is not GH deficient but is on GH shots. His GH was at the low end of normal

but they decided to give him a trial of 0.5mg per day. At first it did

improve hs growth but this has now slowed down again. I think they will stop

the shots in March next year and see what happens then.

Elaine

Mum to Elise (10yrs) & Jack (5yrs) CHaRGE

[Guest guest]

I am chiming in here as we are going through the GH issue ourselves at this

time.

, who is thirteen and two months, is about 51 inches tall, sixty pounds

in weight and has grown a whopping 2.5 cm this last year. tested as

being GH deficient in the initial single blood draw screening (with a bone

age of six and a half - this was done at nine years of age), however, in the

subsequent test done under sedation (a series of blood draws) he tested out

as making adequate levels of GH. Then we went round and round to all the

specialists to determine if there were other factors that might be affecting

his growth. We resolved a reflux issue with Prilosec, which then eliminated

his chronic asthma and URI. He underwent a series of ten gonadotropin

injection which failed to cause his testes to descend, and then had an

orchiopexy (surgical correction of undescended testes) in May of 2000

(millennium testicles! LOL) He changed from a silver Hollinger trach to a

teflon Shiley, and was decannulated earlier this year. He received

clearance from the pulmonologist that there was no long term damage. Then

the endocrinologist and I decided to take a " wait and see attitude " . As of

nine months ago, his bone age was catching up (eleven and a half). He has

had the healthiest two years in his life - ever. He is still at Tanner

Scale 0 for puberty (very little or no signs of...). The endocrinologist

noted that will probably need testosterone injections to bring on

puberty, but that we didn't want to start puberty until we were done

growing - it is my understanding that it is one of the effects of puberty

that causes the bone plates to fuse and closes off he growing period. Our

endocrinologist wants to start a six month trial of GH shots to see

how it affects his growth velocity. If it has no affect, then we will stop.

If it does enable him to grow at a greater velocity, then he will stay on

the injections until his twenties.

I personally don't care how tall is. He is here with us (for which I

am most grateful). He is wonderful to be with. He is smart, funny and

just like his dad.

however cares PASSIONATELY. He is the same height as his eight year

old brother - who is on the short side of average. His ten year old brother

is three inches taller than him and he is also the shortest kid in the fifth

(and fourth!) grade class! is excited to say that he is short now,

but he will be taller when he starts his injections. I was eavesdropping on

his having an instant message conversation and I saw he mentioned that he

often talks about how much he is growing so that he doesn't feel so bad

about being so short.

Even 'other' people, who normally try to be 'encouraging' by saying how much

he has grown, now say - Wow he is really tiny - but look how mature he is!

Now that my ten year old is showing clear signs of puberty, I see the

changes in his body - and especially his face. Now I can define the

difference clearly. My ten year old's face will sometimes show the signs of

an adult face in certain lights, at certain angles. The shape of his jaw

and cheeks are changing. His musculature is changing. But his expression

is still that of a child. has a young countenance and silhouette, but

the expression and depth in his eyes of a well-traveled soul (as he is). To

look at from a distance, you can easily (correctly) guess his age, but

when he is up close, his diminutive size does truly distract from according

him all the attributes of his age.

Any anxiety I have about embarking on this growth hormone journey are

outweighed by 's impatience for it. He was included in the discussion

and the decision making process ......

I will let you know how the journey fares-

best to everyone-

yuka persico

Growth Hormone Testing

>

>

> > My daughter Karlee had the growth hormone test, using clonodine in

October

> 2001. She had a PDA repaired at 9 months, but had no other problems with

> her heart. The medication made her sleepy during the test, but really

did

> not seem to bother her otherwise. The test did not show her hormone

> deficient. The doctor convinced the insurance company that because of her

> small size and delayed bone age that she should still have the growth

> hormone. She has had the injections for a year now. She has grown but

she

> has had trouble keeping up her weight. (She had a g-button until Sept.

when

> it was removed because it was causing other problems) Her oral intake is

> just good enough to keep her going, but not to make any big gains.

> >

> > In Feb. 2002 she developed an eye twitch - just overnight it appeared.

> The treatment for the twitch is a low dosage of clonodine. Her eyes would

> actually roll back in her head so that she couln't even read. On the

> clonodine it is much improved.

> >

> > from IL (Karlee 14 1/2)

[Guest guest]

I want to add- is fully mainstreamed in eighth grade at a middle

school. The delta between him and his classmates is so great in size and

physical maturity that he finds comfort in the program on the Disney channel

called " Smart Guy " - where a ten year old gifted boy is attending high

school.

I did manage to put a little levity in the situation for him. Just before

the summer after seventh grade ended I warned him that alot of the kids

would be coming back to school quite changed - more than even before. I

told him how whe I was in middle school I was totally shocked to come back

to eighth grade a little taller and a little thinner to find everyone else

seemed to have become adults! I told him I am still waiting to look like an

adult.......and he laughed - the running laugh at our house is that I look

like a second grader...... so they understood my point.....

take good care one and all-

yuka persico

[Guest guest]

I would run this by the cardiologist - just to be safe!

Lori Myers

Mother of (5), (2) CHARGEr, Emma (7 wks)

Tary & Carin Draper wrote:

> Hi,

>

> My name is Carin Draper. My husband is Tary, and we have a son, .

> is eleven years old and has CHARGE. Some of the things that

> has includes: colobomas of both eyes, coarctation of the aorta

> repair, profound deafness, attention deficit disorder, tracheostomy,

> gastrostomy, swallowing difficulties, developmentally and gross motor

> delayed, poor coordination, small genitals, asthma, low immune system,

> ear anomalies, malrotation of the intestines, appendectomy,

> tonsillectomy,reflux (Nissen), and frequent ear infections and upper

> respiratory infections.

>

> This is the first time I have ever posted a message to the CHARGE group.

> I am looking for some information on Growth Hormone Testing.

>

> has not grown much over the past three years. He has grown an

> average of 2 cm per year over the past three years. This is less than

> the lowest part of the range for growth. is eleven and is a

> height of 130cm, which is in the 3rd percentile. He has always been

> small for his age and in the < 10th percentile. We have gone to see an

> endocrinologist. He performed the bone study test and took 's IGF

> levels. Based on all of this it looks like is growth hormone

> deficient.

>

> To get the insurance company to pay for the growth hormones, we need to

> put through one more test to test his pituitary gland and its

> output of the growth hormone. To make this work, they need to give him

> a drug called Clonindine that lowers his blood pressure. This also

> causes the growth hormone to be secreted and lets the doctors measure

> how much is being produced.

>

> In talking with the endocrinologist, he mentioned that CHARGE kids can

> sometimes have an adverse reaction to the growth hormone testing. He

> specifically said, " Kids with CHARGE tend to crash when we do this

> test. " This is due to the fact that CHARGE kids tend to have heart

> problems. was born with a coarctation of the aorta that was

> repaired when he was nine days old. Since then he has never had anymore

> issues with his heart or blood pressures.

>

> I am wondering if anyone else has had the growth hormone test with the

> Clonindine. If so, what was your experience with it. Or does anyone

> have any contact names that I could contact about this. I am not

> entirely comfortable with this test until I can get some more

> information. Any information you can provide would be greatly

> appreciated.

>

> Thanks for your help. Have a wonderful holiday season.

>

>

[Guest guest]

Hi! My daughter Sara receives growth hormone shots nightly. She is on

Nutropin Aq and it seems to have helped her. She is going to be twelve next

month and has many " CHARGE " characteristics but does not have a heart

problem. She was diagnosed with CHARGE by process of elimination.

I was worried about the shots but we give them to her while she sleeps and

barely flinches. She has also received the shots while she is awake. Sara

went through all the tests before she was put on growth hormone. The test

you are speaking of (I think) was done in the hospital as a same day

admission. It was a long day but in retrospect it wasn't too bad. I guess

after a lifetime of medical interventions everything is relative.

Good luck to you.

--mother to 11 year old Sara and 6 year old

>

>Reply-To: CHARGE

>To: " CHARGEyahoogroups (DOT) com " <CHARGE >

>Subject: Growth Hormone Testing

>Date: Mon, 9 Dec 2002 19:04:47 -0600

>

>Hi,

>

>My name is Carin Draper. My husband is Tary, and we have a son, .

> is eleven years old and has CHARGE. Some of the things that

> has includes: colobomas of both eyes, coarctation of the aorta

>repair, profound deafness, attention deficit disorder, tracheostomy,

>gastrostomy, swallowing difficulties, developmentally and gross motor

>delayed, poor coordination, small genitals, asthma, low immune system,

>ear anomalies, malrotation of the intestines, appendectomy,

>tonsillectomy,reflux (Nissen), and frequent ear infections and upper

>respiratory infections.

>

>This is the first time I have ever posted a message to the CHARGE group.

>I am looking for some information on Growth Hormone Testing.

>

> has not grown much over the past three years. He has grown an

>average of 2 cm per year over the past three years. This is less than

>the lowest part of the range for growth. is eleven and is a

>height of 130cm, which is in the 3rd percentile. He has always been

>small for his age and in the < 10th percentile. We have gone to see an

>endocrinologist. He performed the bone study test and took 's IGF

>levels. Based on all of this it looks like is growth hormone

>deficient.

>

>To get the insurance company to pay for the growth hormones, we need to

>put through one more test to test his pituitary gland and its

>output of the growth hormone. To make this work, they need to give him

>a drug called Clonindine that lowers his blood pressure. This also

>causes the growth hormone to be secreted and lets the doctors measure

>how much is being produced.

>

>In talking with the endocrinologist, he mentioned that CHARGE kids can

>sometimes have an adverse reaction to the growth hormone testing. He

>specifically said, " Kids with CHARGE tend to crash when we do this

>test. " This is due to the fact that CHARGE kids tend to have heart

>problems. was born with a coarctation of the aorta that was

>repaired when he was nine days old. Since then he has never had anymore

>issues with his heart or blood pressures.

>

>I am wondering if anyone else has had the growth hormone test with the

>Clonindine. If so, what was your experience with it. Or does anyone

>have any contact names that I could contact about this. I am not

>entirely comfortable with this test until I can get some more

>information. Any information you can provide would be greatly

>appreciated.

>

>Thanks for your help. Have a wonderful holiday season.

>

>

>

[Guest guest]

hi Lacey,

hope you don't mind, but, I'm going to add some questions of my own...

first, what does your endocrine doctor 'do'? What sort of things does

'endocrine' cover?

I asked our ds's ped about growth hormone testing and his reply was

something along the lines that it was hard to test for as the growth

hormones test at different levels throughout the day anyway and probably

wasn't worth testing for... comments anyone? I'm not keen push to test for

the sake of testing, especially if testing unpleasant! (if testing is a

blood test, he is an old pro at those!), but ... as Josh is under the third

percentile, (8 months old), and we are already adding extra calories I'm

wondering if we need to look at bit closer at the growth hormone thing... or

is this something that can/should address when he is older? If someone is

deficit in growth hormone, are there are there health consequences if

nothing is done?

tia

Jo

Josh, 20-8-02, CHaRGE'r, + uclbcp, gtube fed, who very determinedly started

to creep along on his tummy this afternoon!

Ben, 5-4-99, who then preceded to crawl everywhere to show josh how to crawl

....unaware of the implications for his block and lego creations!

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

> My son is 11 months old and I remember his endocrine

> doctor mentioning that at 1 yr old that if he was not

> growing we could check him out