CHAT - Lori, Chloe and GH

[Guest guest]

Hi Lori,

I just wanted to let you know that you have a LOT of time before you need to

worry about starting GH (growth hormone). At 9 months of age, Chloe is

really young for a bone age scan. It will be really difficult to have one

accurately read.

Besides all that, GH doesn't " rule " growth in the human body until about the

age of two. Up the that time, caloric intake is much more important. I would

concentrate on improving her daily caloric intake at this age.

We found out the hard way, that not all Endocrinologists understand this!

The first Endo we saw, started Bran on GH at 15 months of age. She was going

by old research, and still believed that GH wouldn't have all that much

affect on his growth because he has RSS and his GH levels are " normal " . She

was only willing to do a 6-8 month " trial " of GHT (growth hormone therapy),

and when calculated out, he wouldn't have " passed " her test because GH

doesn't " rule " growth during that time period. She would have dropped him

from the GH program before he really had the chance to improve his growth.

We chose to stop GHT at that time, and to wait until he had attained his

" caloric repletion " , or caloric catch up growth, before restarting GHT.

One of the biggest problems with GH is that it can increase your child's

growth velocity by 1.5 to 2 times it's current rate.The child MUST be able

to increase their caloric intake to keep up with the increased growth. Even

at 11#, I would think that Chloe is still rather small, even for an RSS

child. I would worry that the GH would make her grow too fast, and she

wouldn't be able to keep up calorically, causing her weight to height ratio

to fall dramatically.

As far as increasing her caloric intake, and Periactin. There have been a

few people that have started Periactin before a year of age, but I believe

most of their kids did not suffer from reflux. One of the side effects of

Periactin can be increased reflux, and even kids that didn't have it before

they started Periactin, can require reflux meds after the onset of

treatment. Undiagnosed reflux led to Bran's severe oral aversion, and

subsequently the placement of a g-tube, because he refused to eat orally. So

you and your Drs will have to weigh Chloe's reflux problems against the

increased caloric intake that can be attained with the use of Periactin.

I think talking to your GI, or Endo about Polycose as an additive would be a

good idea at this time. It can be added to formula, or baby food, and is

tasteless, so it shouldn't affect her desire to eat.

Hope this info helps!

Pat (g-ma to , RSS, 4yrs 2m old, 28# 10oz, 35 " , G-tube, GHT)