Re: Need help with Periactin please

[Guest guest]

Sheryl,

I will tell you what we did with Abby and some may not agree with it but it has

worked for us. Abby started periactin at the endof October. In six weeks she

has gained just over 2 pounds. We were very excited but had heard the same

thing you are experiencing so we decided with consulting with the doctor to back

off of the periactin. Abby though ate more on her own without now than she had

ever before we started it. Six weeks of taking periactin but every other day or

two, we are back on it full strength. If this continues to prove to work for

Abby we will continue periactin this way. We feel like we were on it for long

enough that it trained Abby to eat like this without the periactin. It is a

reward to her to not take it if she can prove to us she can do it on her own.

Abby is 4 1/2 years old.

Just our experience, thought you might want to know. I hope things get better

for you.

Amy (mom to Abby: 4 1/2-RSS-periactin-growth hormones; Tyler: 3-nonRSS; Baby

Boy: due in July)

olifraz wrote:

Dalia started on Periactin around 1.5 months ago and other than the

first few days of extreme crankiness it really worked great at

first...she put on a pound in 3 weeks and I never saw her eat so

much...also, she had bm's every day (tmi, sorry).

Well this was short lived...suddenly she went back to her old

appetite and fewer bm's, so the GI told me to gradually up her dose

each week...we started at 1cc 3x/day before meals and now we are up

to 1.5cc 3x/day....but, still no improvement like in the beginning.

The doc also said if the constipation continued he would put her on

Mirilax?? The bm's are normal, just every 2-3 days now instead of

every day.

Does this sound typical? Is her dose appropriate? Maybe it seemed

so successful at first because she was going through a growth spurt

at the same time?

Anyway, I know a lot of you have experience with this..

Thanks,

Sheryl (Dalia, SGA, 14mos, 16lbs, 27in, Prilosec, Periactin)

---------------------------------

[Guest guest]

We always found that Periactin worked great with Max in the

beginning, but over time it would lose its effectiveness. Max's GI

at the time suggested a " drug holiday. " He said to stop giving it

for a week or two and then start back up again. We opted for the

two week break then used it for 6 weeks, took another break, etc.

It was the perfect solution for Max.

I also think that while he was eating more from the med, he learned

to enjoy food a bit more. He tried various foods he had not been

eating before and began to develop a palate for the tastes.

Don't give up on the Periactin. You just have to try different

things, with your doctor's permission, of course, and see what works

for Dahlia.

As for the Miralax, there are more and more RSS kids who are needing

this med. It is safe to use. It seems that they have slow gut

motility, therefore the less frequent stools. And with the less

frequent stools, the stomach empties slower and there is no appetite

that develops to fill it. It has no taste and mixes in well with

all liquids. Again, it works wonders for Max, who has severe gut

dysmotility despite the triple procedure.

Jodi Z

[Guest guest]

Sheryl,

Just wanted to let you know that Miralax works great for Jonah and Dr. feels

strongly that he should go every day. If Abby is only going to the bathroom

every few days, then she probably not feeling hungry.

, Jonah's mom

Re: Need help with Periactin please

>

> Sheryl,

>

> I will tell you what we did with Abby and some may not agree with it but

it has worked for us. Abby started periactin at the endof October. In six

weeks she has gained just over 2 pounds. We were very excited but had heard

the same thing you are experiencing so we decided with consulting with the

doctor to back off of the periactin. Abby though ate more on her own

without now than she had ever before we started it. Six weeks of taking

periactin but every other day or two, we are back on it full strength. If

this continues to prove to work for Abby we will continue periactin this

way. We feel like we were on it for long enough that it trained Abby to eat

like this without the periactin. It is a reward to her to not take it if

she can prove to us she can do it on her own. Abby is 4 1/2 years old.

>

> Just our experience, thought you might want to know. I hope things get

better for you.

>

> Amy (mom to Abby: 4 1/2-RSS-periactin-growth hormones; Tyler: 3-nonRSS;

Baby Boy: due in July)

>

> olifraz wrote:

>

> Dalia started on Periactin around 1.5 months ago and other than the

> first few days of extreme crankiness it really worked great at

> first...she put on a pound in 3 weeks and I never saw her eat so

> much...also, she had bm's every day (tmi, sorry).

>

> Well this was short lived...suddenly she went back to her old

> appetite and fewer bm's, so the GI told me to gradually up her dose

> each week...we started at 1cc 3x/day before meals and now we are up

> to 1.5cc 3x/day....but, still no improvement like in the beginning.

>

> The doc also said if the constipation continued he would put her on

> Mirilax?? The bm's are normal, just every 2-3 days now instead of

> every day.

>

> Does this sound typical? Is her dose appropriate? Maybe it seemed

> so successful at first because she was going through a growth spurt

> at the same time?

>

> Anyway, I know a lot of you have experience with this..

>

> Thanks,

> Sheryl (Dalia, SGA, 14mos, 16lbs, 27in, Prilosec, Periactin)

>

>

>

>

>

> ---------------------------------

>

[Guest guest]

We had a similar experience with Periactin. It worked well at first

and then seemed to wear off. We increased it to 6ccs, but may have

increased too much and the reflux was preventing him from eating.

Dr. H sent the following to our Ped:

Increase the cyproheptadine to 0.3 mg/kg/day = 5.7 cc before

breakfast and dinner. If this dose does not bother his GERD or

behavior, continue to weight adjust it every 3 mo with his weight

check.

Now at a lowered dose he is eating well again. I think it is a very

fine line to find the right now without increasing the reflux. Colin

gets 5.7ccs twice a day. He is around 33lbs.

Colin does have constipation issues and is on Miralax. We are

working to find the right dose right now, but I can't say how often

he goes is related to the Periactin dose. Hope this helps!

Colin (RSS, gtube) and Hayden - 4 year twins

Grant - 1

>

> Dalia started on Periactin around 1.5 months ago and other than

the

> first few days of extreme crankiness it really worked great at

> first...she put on a pound in 3 weeks and I never saw her eat so

> much...also, she had bm's every day (tmi, sorry).

>

> Well this was short lived...suddenly she went back to her old

> appetite and fewer bm's, so the GI told me to gradually up her

dose

> each week...we started at 1cc 3x/day before meals and now we are

up

> to 1.5cc 3x/day....but, still no improvement like in the beginning.

>

> The doc also said if the constipation continued he would put her

on

> Mirilax?? The bm's are normal, just every 2-3 days now instead of

> every day.

>

> Does this sound typical? Is her dose appropriate? Maybe it

seemed

> so successful at first because she was going through a growth

spurt

> at the same time?

>

> Anyway, I know a lot of you have experience with this..

>

> Thanks,

> Sheryl (Dalia, SGA, 14mos, 16lbs, 27in, Prilosec, Periactin)

[Guest guest]

Everyone else has written great things. One other thing. It may

simply be that Dalia has gotten her " catch-up " weight gain, and she

is now just moving along at her normal curve. Without the

PEriactin, she may drop in her weight growth velocity. What is her

weight for height right now? Is she at the 15th percentile weight

for height, or better? Jenn

>

> Dalia started on Periactin around 1.5 months ago and other than

the

> first few days of extreme crankiness it really worked great at

> first...she put on a pound in 3 weeks and I never saw her eat so

> much...also, she had bm's every day (tmi, sorry).

>

> Well this was short lived...suddenly she went back to her old

> appetite and fewer bm's, so the GI told me to gradually up her

dose

> each week...we started at 1cc 3x/day before meals and now we are

up

> to 1.5cc 3x/day....but, still no improvement like in the beginning.

>

> The doc also said if the constipation continued he would put her

on

> Mirilax?? The bm's are normal, just every 2-3 days now instead of

> every day.

>

> Does this sound typical? Is her dose appropriate? Maybe it

seemed

> so successful at first because she was going through a growth

spurt

> at the same time?

>

> Anyway, I know a lot of you have experience with this..

>

> Thanks,

> Sheryl (Dalia, SGA, 14mos, 16lbs, 27in, Prilosec, Periactin)