We've got a small dilemma re: growth hormone...

[Guest guest]

Our 2 yr old has been taking growth hormone for several months now, and

while we have seen a great improvement in her height, we have seen very

little improvement in her weight (she's skinnier now, but still looks

normal). Due to this, our Endo wants to up her dose, thinking that at a

higher dose, her weight and maybe muscle mass may start to improve as well.

However, our OT and PT are a little concerned. has been showing slow,

but good progress in learning to stand and walk, and the OT & PT are

concerned that if she grows taller even faster than she is now, that it will

make things more difficult for her, as her center of gravity will be rising

faster and she will be working harder just adjusting to this.

Has anyone seen a situation where upping the dose has changed things for the

positive in a situation like ours? Has anyone seen the opposite?

We feel our Endo is pretty good, but he will be the first to tell you that

this is his first experience with Charge. We really would like to see her

weight gain improve, but I don't think we are ready to sabotage her PT & OT

progress to have it happen. Of course the PT & OT fears could be unfounded,

in which case we should upping the dose is an easy decision.

See our dilemma? Anyone out there got any guidance for us based on your

experience or expertise?

Thanks,

Christian Lobaugh

Husband to Ingrid, Father to (5) and (2 yr old charger)

[Guest guest]

You could try having your Dr. contact Dr. Kirk in the UK who

is the endocrinologist who worked with many children with CHARGE in

Birmingham. Parents have reported here the greatest sign of change

while on growth hormones was the energy level of the children, and

that in itself was important for helping them to be more active, and

increasing muscle tone.

Ann Gloyn,

Canada

> Our 2 yr old has been taking growth hormone for several months

now, and

> while we have seen a great improvement in her height, we have seen

very

> little improvement in her weight (she's skinnier now, but still

looks

> normal). Due to this, our Endo wants to up her dose, thinking

that at a

> higher dose, her weight and maybe muscle mass may start to improve

as well.

>

> However, our OT and PT are a little concerned. has been

showing slow,

> but good progress in learning to stand and walk, and the OT & PT are

> concerned that if she grows taller even faster than she is now,

that it will

> make things more difficult for her, as her center of gravity will

be rising

> faster and she will be working harder just adjusting to this.

>

> Has anyone seen a situation where upping the dose has changed

things for the

> positive in a situation like ours? Has anyone seen the opposite?

>

> We feel our Endo is pretty good, but he will be the first to tell

you that

> this is his first experience with Charge. We really would like to

see her

> weight gain improve, but I don't think we are ready to sabotage her

PT & OT

> progress to have it happen. Of course the PT & OT fears could be

unfounded,

> in which case we should upping the dose is an easy decision.

>

> See our dilemma? Anyone out there got any guidance for us based on

your

> experience or expertise?

>

> Thanks,

> Christian Lobaugh

> Husband to Ingrid, Father to (5) and (2 yr old charger)

[Guest guest]

Hello,

My understanding of GH is that it only effects linear growth and will not

help with weight issues. You can check the Physican's Desk Reference, which is

a

good source. My son too is on GH and while we have seen significant change

in linear growth and muscle strength he is still a " string bean " . I am

focusing on diet issues with him to improve weight gain....good balance of

nutrients

as well as pushing calories. Hope this helps!

Kim McKie mom to Will 23 months, CHARGe

[Guest guest]

Hello,

My understanding of GH is that it only effects linear growth and will not

help with weight issues. You can check the Physican's Desk Reference, which is

a

good source. My son too is on GH and while we have seen significant change

in linear growth and muscle strength he is still a " string bean " . I am

focusing on diet issues with him to improve weight gain....good balance of

nutrients

as well as pushing calories. Hope this helps!

Kim McKie mom to Will 23 months, CHARGe

[Guest guest]

Hello,

My understanding of GH is that it only effects linear growth and will not

help with weight issues. You can check the Physican's Desk Reference, which is

a

good source. My son too is on GH and while we have seen significant change

in linear growth and muscle strength he is still a " string bean " . I am

focusing on diet issues with him to improve weight gain....good balance of

nutrients

as well as pushing calories. Hope this helps!

Kim McKie mom to Will 23 months, CHARGe