Re: Re: Loretta/Alison-chat Jen S.

[Guest guest]

Hey Jen,

To answer your Question, No reflux and gastric delay has not been ruled out.

We saw a GI doc. she wanted to order the barium swallow and the gastric

empting test but we choose to wait until the 3 month trail of liq. periactin

to see if it gave her the bust. And if no g-tube needed are these studies

needed?

Loretta

Re: Loretta/Alison

> 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

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >