Re: just got custody of rss child

[Guest guest]

Hi! sorry I can't address you by name, but you didn't leave one that I could

find. My name is Pat, and my g-son has RSS. is 26 months of

age, weighs 20# 7oz, and measures 29.4 " long. He is 100% g-tube fed, due to

an oral aversion caused by missed reflux when he was a baby.

1) Doe she have a GI specialist?

2) Has she been checked for reflux? This is a very common problem with RSS

kids, and Drs seem to easily miss " silent " reflux (no outward signs)

3) Is she a good eater?

4) Have you ever tried an appetite stimulant, such as Periactin?

5) Has anyone ever suggested a g-tube?

To make suggestions on other things that could be tried, you need to provide

more imformation about where you are now. I hope this gives you a starting

place anyway.

Welcome to the group! You've found a great place to be! The people here are

warm, caring, supportive, and informative.

Pat (g-ma to , RSS, 26 months, 20# 7oz, 29.4 " , Prevacid, Singulair,

GT)

[Guest guest]

Hi,

Welcome to our group. I hope we can answer your questions.

I read this message and your weight correction message.

Has any doctor mentioned an appetite stimulant? The one that seems

to be used the most is periactin ( aka cyproheptadine ). It is an

anithistamine that also stimulates ones appetite. However, it doesn't

always work. You might want to ask her doctor about trying it.

A lot of RSS kids are on feeding tubes. Has any of her doctors

mentioned this? It might be something to consider.

Also, what is the dosage of growth hormone. Your doctor might want to

consider upping this. A larger dose of growth hormone can also

increase ones appetite.

Stress is a factor which can reduce anyone's appetite but I doubt

that this is major factor affecting your daughter's appetite.

In the meantime, you can try increase the calories she gets by adding

butter or kayro syrup to some of her foods. Also, let he eat ice

cream (Ben and Jerry's -- it has the calories per ounce). Gogurt

yougurt is also very high in calories. What we do with our son is let

him eat just about any high calorie food he wants. That usually means

french fries, pizza, potato chips, ice cream, hot dogs, etc.

Everything an adult should avoid. We also let him watch tv while he

eats. This often distracts him and he eats more.

Our son is almost 7, 43 inches tall and 36 pounds. He gets periactin

once a day and a growth hormone injection at night.

I hope this helps.

Ken M

> My husband and I finally got temporary custody of our, well his, I

> treat her like she's mine, 6 year old daughter, in May 03. We had

> to get a court order to make the mother take the child to a doctor

> in March 02., for failure to thrive. She was then diagnosed with

> rss. She takes growth hormone therapy shots. We have since pulled

> all doctors medical records since about 2 years of age and have

> found 2 doctors that have stated that the mother doesn't care about

> the health. We finally got the temporary order due to the mother's

> mental instability. When we were told by the mother about rss we

> were told confusing things about it. She seemed like she didn't

care

> to know much about. We want to anything and everything. We just go

> our computer this year, and I talked to from the Magic

> Foundation on 3-5-04, who told me about this web site. is

6

> years old, weighs 34.9 lbs. and is 38 inches tall. Please let us

> know if there's anything else her doctor might could be doing for

> her or for us to help her gain weight and grow. Does any one think

> stress could be a factor in weight gain? There is alot of stress

> when she visits her mother. She doesn't want to go.