Re: Loretta/Alison

[Guest guest]

Loretta - Salem piping in here. I too am a bit worried

from experience about starting Alison on GHT at 2 when she is less

than 14 pounds. There are a number of reasons, but the primary one

is this: she clearly isn't getting enough calories into her right

now to sustain her growth.

Our division has seen two things happen with kids like this. Either

a) the GHT just doesn't work properly because there aren't enough

calories.

or

the opposite happens. The child DOES grow; but here is another

problem. Now the child is growing rapidly, their growth velocity

typically can DOUBLE (meaning if 2 inches a year prior, goes to 4

inches a year), this means that will have to increase her

weight by DOUBLE what she is now..... how does the doctor plan on

getting that many more calories into her.

I look back on pictures of before GHT. Absolutely she was a

tiny child, but she looked healthier. Her face was fuller and you

could barely see the " RSS look. " Once she started on the GHT, it

has been a constant struggle to keep her from looking gaunt -- many

IVs whenever she gets sick because there is no room for error with

her weight.

I want to make sure that you see all sides before deciding on GHT at

the early age of 24 months. It is a tough decision, and one that

doesn't need to be rushed.

Has been ruled out for reflux and for delayed gastric

emptying???? Salem

> > > > Hello everyone,

> > > > Welcome to all the new people here. I do not get to post

> much,but

> > > > want to let you know how has been doing.

> > > > She will be 2 next month. She is currently 28.5 in. and

13#

> 14oz.

> > > > She will a wt. check again at the end of the month.

> > > > The endo here does not like the response from the

periactin

> alone

> > > > so she wnats to start her on GHT as soon as the insurance

> approves

> > > > it. She does not feel a feeding tube is needed yet.

> > > > continues to have OT PT and will start ST this

week.

> > > > She is walking around and trying to repeat every thing she

> hears. She

> > > > did get braces for the ankle on the right and to stop the

foot

> > > > rolling on the left, which also has a lift on it.

> > > > has started to potty train herself, so we are

> working on

> > > > that also. She as been the easiest one to train in that

dept.

> so far.

> > > > Well I think I hit the highlights, so I'll close for now

> > > > Take care all,

> > > > Loretta, mom to

plus 3

> > >

> > >

> > >

> > >

> > >

> > >