Re: Growth Hormone Therapy

November 26, 2005

Hi, Judi. Welcome to our group. I'm just lurking here this evening

because I am bored out of my mind! I've been sick with bronchitis

for several days and the restlessness has set in... Usually there

are more people who are posting and chatting, but I guess they are

all busy with the holiday weekend and the sudden rush of Christmas

preparations.

I am the mother of Max and Jenna. Max is 17 and has RSS. Jenna is

20, no RSS, but giving us a challenge any way she can. Anyway, Max

has been on GHT since just before he turned 3. Initially he

responded very well, but over the years he began to slow down. He

is a patient of Dr. Harbison's (is that who you meant, or does your

grandchild see a Dr. Harbinger? If so, where is that doctor?). He

was actually her 3rd RSS patient and now she has over 200. He has

had good growth, slow growth and no growth but Dr. H. has told us to

stick with her and that she would make him grow " because no one else

is going to get him to grow. " I'm happy to say that he is now 5'5 "

tall and still growing. He is all filled out with broad shoulders

and almost actually looks 17. Well, most people think more like 14,

but we are always hoping....

I hope more people respond with positive GHT stories. I know it's

hard to inject your child every night, but kids are resilient and

they learn to adjust. Max now gives himself his shots - and he has

to do them twice a day. There are ways to help with the adjustment

by giving the child a sense of control (we used to let Max inject a

stuffed animal after he got his own shot) and many of us can help

you and the parents along the way.

Jodi Z

November 26, 2005

Please forgive me - Jodi, not Jody. Sorry.

Judi

November 26, 2005

Hi Judi,

We haven't experienced GHT yet, but as soon as my son Noah gains a few

pounds to get up to the 15% weight to height we will be taking that

journey too.

I just wanted to say welcome and to let you know that this is a

wonderful place to meet people with similar issues and get good

information. I just joined this list in September and am so happy to

have found it.

Jodi's is a wonderfully inspiring story about Max and makes me all the

more anxious to get going with the GHT.

Dawna

Mom to Matt 13, 11, Kaitlyn 8 and Noah 3 RSS 19lbs 8.7 ounces,

Periactin, UPD7 M, GH deficient

>

> I've just joined this group last night. I have a beautiful

granddaughter who has been diagnosed by Dr. Harbinger with RSS. The

baby just turned two the other day and will be starting GHT within the

next couple of weeks. Dr. H. and the endocrinologist are working

closely to come up with the right dosages of the medicines. I've done

a little reading about this but really wanted to hear from anyone on

this list who has experienced GHT and learn more about it and, most

especially, the results. If you have any information and/or advice,

please post an answer to this e-mail. Thanks so much for any help you

can give.

>

> Judi

>

November 27, 2005

Judi,

My name is and my daughter who will be 6 the end of December

was diagnosed with RSS and then not, however, she does have some sort of growth

disorder we just don't know what. We also treat with Dr. Harbison since we live

in New Jersey. I can't help you with any GHT questions or stories since

is not on growth hormone. I wanted to welcome you to the group.

B

and Kelli

Mnjblack@... wrote:

I've just joined this group last night. I have a beautiful granddaughter who

has been diagnosed by Dr. Harbinger with RSS. The baby just turned two the

other day and will be starting GHT within the next couple of weeks. Dr. H. and

the endocrinologist are working closely to come up with the right dosages of the

medicines. I've done a little reading about this but really wanted to hear from

anyone on this list who has experienced GHT and learn more about it and, most

especially, the results. If you have any information and/or advice, please post

an answer to this e-mail. Thanks so much for any help you can give.

Judi

November 27, 2005

Judi,

It IS Dr. Harbison. Many of us take our kids to see her. And I

know who Dalia is. I'm so glad she has a grandmother who is

learning so much about RSS and wants to help her. What a lucky girl

she is.

I understand so well the trials and tribulations of getting our kids

to eat. Max was totally tube fed for the longest time. He would

only eat small bits and pieces, not nearly enough to survive. He

had blood sugar and ketone issues, too, which really complicated

things. Now, believe it or not, I just yelled at him for eating a

second breakfast! I mean, come on - he had a bowl of cereal at 7am,

was eating Hershey Kisses at 9 and just went into the kitchen for a

bagel at 9:30. Teenage boys! I never thought I'd see the day I'd

be telling him NOT to eat!

But another thing we have to look out for with our kids is Type II

Diabetes when they get to those teenage years. Some kids begin to

overeat and not get enough exercise. Their bodies react and this

condition can develop. Just when we think we can relax, something

else pops up. So far, Max is okay. But he has to learn that he

must control himself. After so many years of begging and pleading

to eat, he has to be retrained.

Jodi Z

November 27, 2005

Judi, Welcome! The MAGIC Foundation has a lot of information on

growth hormone therapy, as well, and there are personal stories on

their website.

My own daughter, , was born at 5lbs and 17 inches long. My

husband is 6'4 " and I am 5'3 " (it is always important to know the bio

parents heights so a mid-parental target height can be determined).

So 's target height was 5' 7.5 " tall (if she didn't have RSS).

She was not on the growth charts for weight or height at 4 1/2 years

old, when we saw Dr. Harbison. She quickly gained 3 pounds in 3

months, with the first diet changes Dr. H recommended. And at 4yrs 9

months, when she started growth hormone, she was finally up to THIRTY

pounds, and 38 " tall. So she still wasn't on the growth charts, but a

good gain of 3 pounds in just 3 months, from diet changes alone.

In 5 years on growth hormone, Dr. H has slowly made dose adjustments,

still trying for an optimum dose, but keeping it as low as possible.

has gradually made it up the growth charts to about the 65th

percentile. She hasn't reached her midparental target height of 75th

percentile, but we're happy with where she is at, obviously.

Clearly, as the kids get older, there are other issues that come into

play that can affect the outcome of their height, impacting GHT.

Puberty and adrenarche. Ugh.

But for now, is tracking to be above 5'3 " tall, and we are

ecstatic, as is she. She would have been between 4'7 " and 4'10 " .

Salem (, almost 10 yrs old, about 55 " , 62 lbs, on

Humatrope GH, Prevacid, Periactin, Arimidex, and Miralax.