Hailey Update- HELP!!!

October 19, 2005

I really do not know what to do. Hailey was sick and started

wheezing, she is finally better! Now she has another nasty ear

infection and had to go to the doctor. She has lost 4oz since her

last weight check. When I took her to the doctor on Monday, he said

he wanted her to go back to her allergist and to make another

appointment with her endo.

We found out in August that Hailey has reflux, slow gastric

emptying, and low blood sugars. We also canceled her last endo

appointment because we were scared of the gh. We did not know what

to expect, the side affects, and the benefits. We are still not sure

which way to go, but we are going to the endo on Tuesday.

When we took Hailey to the genetics doctor last month, she said that

Hailey would probably make it to 5 ft without gh. I do not know

whether we should make the decision to go that route or just leave

her alone. I would like to know from yall what you think and what

the benefits of gh are. I am really confused. I want her to grow,

but I do not want to cause her any more pain than needed. She is

already so afraid of needles due to all the testing that she has

already had to go through.

Hailey is 24lbs and is 34 and 1/2 inches tall and is 3 years 8

months.

October 19, 2005

,

I think you are jumping the gun on the decision whether or not to

start gh. Hailey seems to be quite underweight for her age and,

according to Drs. Harbison and Stanhope, she needs to achieve catch-

up growth through weight gain first. Once you have done that, then

it would be time to consider gh. Even then, you don't HAVE to do

it. It's an option and there is no right or wrong answer/decision.

For now, as I said, I think you have to work on getting Hailey to

gain, eat more, whatever it takes. It's so hard, especially when

kids get sick a lot. Even Max, at 17 and with all he is going

through, has lost 4 pounds since last week. It's always a

struggle. But " kids don't grow on air, " to quote, I believe, Dr.

H. So we have to plug along and focus on that first and foremost.

Once that is achieved, you still have time to make the decision. No

one says that gh must be started at 3 or 4. There are kids who have

not started until a few years older. As long as you keep an eye on

her bone age, her growth velocity, her state of hopefully not being

in adrenarche, then you have time. And over time, you will know

what you think is best for her. And we all will support you no

matter what your decision. It is extremely personal and no one has

the right to judge you on the decision you make. WE certainly won't.

Please, however, try to keep in mind several factors that are in

favor of using gh: it helps stabilize blood sugars, it helps build

muscle mass, it may help increase appetite,it does help make a child

taller. For a girl, it is not quite as much of an issue as for a

boy. If Max were to be 5 feet, he'd be quite upset and angry. Now,

at almost 5'5 " , he is happy and, I think, would be content if he did

not grow anymore. But he's been taking and giving the shots for 14

years now. We really had no choice. He was too sick, too unstable,

too skinny, totally tube fed.... And I doubt he would have even

made it to 5 feet. At his growth rate at the time, he was tracking

for 4'8 " at best.

Go see the endo. See what the endo has to say. Keep an eye on

things and research, ask questions and talk. Again, it is not a

decision that has to be made now.

Jodi Z

October 20, 2005

>

> ,

>

> I think you are jumping the gun on the decision whether or not to

> start gh. Hailey seems to be quite underweight for her age and,

> according to Drs. Harbison and Stanhope, she needs to achieve catch-

> up growth through weight gain first. Once you have done that, then

> it would be time to consider gh. Even then, you don't HAVE to do

> it. It's an option and there is no right or wrong answer/decision.

>

> For now, as I said, I think you have to work on getting Hailey to

> gain, eat more, whatever it takes. It's so hard, especially when

> kids get sick a lot. Even Max, at 17 and with all he is going

> through, has lost 4 pounds since last week. It's always a

> struggle. But " kids don't grow on air, " to quote, I believe, Dr.

> H. So we have to plug along and focus on that first and foremost.

>

> Once that is achieved, you still have time to make the decision.

No

> one says that gh must be started at 3 or 4. There are kids who

have

> not started until a few years older. As long as you keep an eye on

> her bone age, her growth velocity, her state of hopefully not being

> in adrenarche, then you have time. And over time, you will know

> what you think is best for her. And we all will support you no

> matter what your decision. It is extremely personal and no one has

> the right to judge you on the decision you make. WE certainly

won't.

>

> Please, however, try to keep in mind several factors that are in

> favor of using gh: it helps stabilize blood sugars, it helps build

> muscle mass, it may help increase appetite,it does help make a

child

> taller. For a girl, it is not quite as much of an issue as for a

> boy. If Max were to be 5 feet, he'd be quite upset and angry.

Now,

> at almost 5'5 " , he is happy and, I think, would be content if he

did

> not grow anymore. But he's been taking and giving the shots for 14

> years now. We really had no choice. He was too sick, too

unstable,

> too skinny, totally tube fed.... And I doubt he would have even

> made it to 5 feet. At his growth rate at the time, he was tracking

> for 4'8 " at best.

>

> Go see the endo. See what the endo has to say. Keep an eye on

> things and research, ask questions and talk. Again, it is not a

> decision that has to be made now.

>

> Jodi Z

>

,

Hi. My name is Reah and my daughter is 27 months old and

17lbs. She was diagnosed with rss at 9 months by a genetic

specialist.Since then we have started her on periactin(an appetite

stimulant)and on her second birthday her endo put her on nutropin

(growth hormone).her height has increased but her weight remains a

problem.She is very uninterested in eating.I think early intervention

is the best idea.They will track your child's growth and make a

determination wether your child is growing better with it.If not they

will discontinue it's use.We only started in June,so we're hoping for

the best.Do you know of anywhere I can get small toddler clothes?

Chloe needs about 12-18 months in length and 6 months in the

waist.I'm having small underwear made for her to help with potty

training.If you have any resources please help.

Thank you,

Reah

October 21, 2005

Hi Jodi !

I have never heard of someone not considering GH with RSS. I would be so

happy to not have to worry about that. I have known a few people who are 4'11'',

and I don't think there's anything wrong with that for a girl. So an endo is

able to calculate what a childs size is now at a particular age, and figure how

tall they will get? Or do they go by how much they grow at a time on the growth

chart? Dasia has very low muscle tone, does GH help this considerably? Do you

know if there are any families who chose not to use GH, and still reached a

fairly normal height, or how common this is? You help a lot of people, thanks

for being here!! And anyone else who would like to add, thank you!

reahfrailley wrote: