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Periactin & Fat Powder???

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Coby has not gained any weight in the last couple of months so he has

been put on periactin and fat powder. Of course this means that I

have a couple questions for everyone.

1) What kind of fat powder are you using? Coby's gene told us to

get Nestle Additions. I know during the nutritional discussion at

the convention she had a great fat powder but I missed part of that

because Coby was fussing. Could someone tell me what it was and why

it is suppose to be the one to use?

2) I made the mistake of giving Coby a full dose of periactin his

first dose. OMG, the poor baby slept for like 14 hours straight.

First time he has EVER slept all night. I now understand how to

break up the doses into a month to get to the full dose. However, I

see that everyone says that the doses should be given 2x a day, but

Coby's prescribed amount is 2.5ml 3x a day. Should I take the 7.5 ml

that he is prescribed a day and break that into breakfast and dinner

doses???

Thanks for you help and your answers.

le, mom to:

ShyeLynn, Brock, and Coby(rss) & Carlee

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le,

Before convention I was giving Matt his periactin 3 times a day per

his GI's instructions. Dr. H looked at me like I was nuts (as only

she can), asked why 3 doses, and proceeded to split his dose in a

morning and afternoon dose! I love it. Matt is in school and if I

give him periactin at noon, we are just asking for a " meltdown " in

the afternoon. He is tolerating the am and pm dosing much better.

But increase the dose slowly! Good luck

Beth

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Start with only the evening dose and work up to the prescribed

amount slowly, like over a few weeks. Once he is tolerating that,

then you start the morning dose and do the same thing. It can take

6 weeks or longer to get up to the full dose for both times of day.

Don't worry, though. You will see it start to work even at a small

dose. It's an amazing drug.

Jodi

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Hi le,

That sounds like it might be too high a dose for Coby - depending on

whether your periactin is 2mg per 5mls or 1mg per 5 mls. If his

medication is 1 mg per 5 mls then the dose could be OK.

The periactin that we use is 2mg per 5 mls. Tyler, who is 4 1/2 yrs

old and about 25 lbs, only gets 3.5 mls 2x per day.

Dr. H adjusted our dose to that level after our pediatrician started

us at a dose more than double that. She was well-meaning but had

only heard about periactin at a conference - Tyler was the first

RSS/SGA patient for whom she prescribed periactin.

Periactin has worked wonders for us. We've just put Tyler back on it

and will keep him on it. He's been on it 3 times in the past and

showed a good weight gain during those months. Hope it works for

Coby too.

(Tyler, 4.5 yrs; , 3 yrs; Kelsey, 17 mos)

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