Re: any new results with gh/periactin?

[Guest guest]

Hi,

Sorry for the delay in approving your mesage. I am away on

vacation and don't have daily access to my email.

I have a son who is 8, on growth hormone and periaction. He is

doing great. We are gettinng excellent results.

I'll fill you in next week when I get home from Walt Disney World.

Ken M

> I wanted to know if there are any RSS kids who are approx.

7yrs old

> who has been on gh or a combination of gh/periactin and if the

results

> are positive? My son Trey was on gh for a while, but I took him

off

> of it because his weight was not keeping up with the growth.

He

> became even more thin looking. We were at the convention a

few years

> ago and saw Dr. H. I've been reluctant to use the periactin.

Has

> anyone had good results from using it? I would love to take

Trey to

> the convention next summer, especially since he is older. I

think he

> would enjoy keeping in touch with other RSS kids. Thanks so

much for

> any input.

[Guest guest]

We started on Periactin when she was 4 1/2 and quit because of

the crankiness. THen about 6 months later, after being on GH and her

weight-for-height plummeting, we started it again. But this time, Dr.

H told us about her way of gradually beginning the dose (where you

start with only 50% of the dinner dose every night for a week; then go

to 100% of dinner; week 3 you add in 50% of breakfast while continuing

100% of dinner and finally, only in week 4 do you reach 100% of

breakfast and 100% of dinner).

Two things we have experienced in the last 4 years on Periactin and GH.

First, has NEVER reached being able to take 100% of the

breakfast dose. She just gets too cranky. So she takes 100% of the

dinner dose and about 75% of her breakfast dose. Each time she gains

weight and the dose is adjusted, we slowly inch her amount up a bit

but have never been able to get above 75% for the morning.

Secondly, I think it was about 2 years ago? I wrote a story about

this for the MAGIC Touch newsletter. We thought seemed fine

so we stopped the Periactin, against Dr. H's wishes. Dr. H tracked

her weight for us for, gosh, I think it was 9 months. We were so

excited because was eating, and she was gaining weight.

We went to her last checkup and DR. H showed us the weight curve.

UGH. was gaining weight. But not fast enough to keep up with

the extra growth she was gaining in height from the GH. Her weight-

for-height was ABYSMAL. So we started the Periactin again and she is

on it today. I sometimes forget the dinner dose if we are off and

running around, but for the most part, her weight has stayed at the

same curve (15th percentile) for the last 18 months. Her height is at

the 65th percentile, so she is still VERY thin, but solid muscle.

I don't like giving her another medication. But I've done a lot of

research on it, and in terms of meds, this is a pretty benign short-

acting antihistamine (of which zillions of people are on daily

antihistamines). We realized that our only other option was a feeding

tube, and decided that we would go the less invasive route, IF the

Periactin worked. If it didn't, we would have to put in the feeding

tube.

Hope this helps you. Cypropheptadine has been studied quite

thoroughly in the use of appetite stimulation for pediatrics with

anorexia and ADHD/ADD, and adults with cancer and anorexia. Every

study found that those on cyproheptadine gained weight significantly

more than those not on it. Several of the studies were randomized

double-blind as well. Interestingly, though -- some of the studies

mentioned the " lethargy " side effect. And one of the studies was on

kids with ADD/ADHD, where the medications for that were causing a

weight loss. And besides gaining weight on cyproheptadine, the study

found that the kids who normally had trouble going to sleep, went to

sleep faster and more easily on the cyproheptadine (it was an extra

benefit that they didn't realize would happen).

Salem

> I wanted to know if there are any RSS kids who are approx. 7yrs old

> who has been on gh or a combination of gh/periactin and if the

results

> are positive? My son Trey was on gh for a while, but I took him off

> of it because his weight was not keeping up with the growth. He

> became even more thin looking. We were at the convention a few

years

> ago and saw Dr. H. I've been reluctant to use the periactin. Has

> anyone had good results from using it? I would love to take Trey to

> the convention next summer, especially since he is older. I think

he

> would enjoy keeping in touch with other RSS kids. Thanks so much

for

> any input.