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RE: Re: From Boston-SGA-Growth Hormone Test-periactin response

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Every child reacts differently to medication. I know there are some

families who see Huge appetite increases with periactin, we saw a slow and

steady increase. We started with ¼ the recommended dose in the AM for one

week and then increased by the same amount weekly until we were up to a full

AM dose. Then we did the same for the PM dose. Alyssa did very well this

way. When her dose increases due to weight gain I always increase the AM

dose the first week and the PM dose the second week. I don’t always notice

that she eats more, but when she’s not on it she doesn’t gain weight. SOOOO

that tells me it’s working, whether I notice it or not.



From: RSS-Support [mailto:RSS-Support ] On

Behalf Of kirkconley1011

Sent: Monday, March 13, 2006 12:38 PM

To: RSS-Support

Subject: Re: From Boston-SGA-Growth Hormone Test


We have a 5 year old daughter who has been told she has RSS and

features by one doctor and not by Dr. H however she has been through

many test to this point. They all decide that she does need Growth

hormone according to her blood work and size. The GH test is just

blood work and measurements of hieght and weight and bone age. They

will have you come back a few times before mentioning a course of

treatments depending on the doctor. She did well with that. The test

that she hated was when they put a tube down her nose for her reflux

to see how severe it was. We started Growth Hormones the end of July

and she has been succesful so far. Her strength and gross motor is

remarkable from last year. Fine motor is still an issue but Rome

wasn't built in a day. We have days where sahe will eat and then a

week long when she will only have a cracker and milk.

na's bone age is 3.5 yrs old she is 5 yrs 3 months which i'm not

sure where that falls one of the other moms hopefully can say that's

where she should be. I am glad it has not gone over her age being on

GH. We go to Children's in Boston so if you would like to talk let me


Marcy na's mom 39inch 30.50 lbs


> Hi everyone,

> I'm new here and I'm so glad I found you. I have a 5

> year old who was born at 28 weeks and SGA (1lb. 14

> oz.). He now weighs 28 lbs at age 5. We have just

> started to add things up and then at the same time I

> found Magic Foundation. It's a bit overwhelming as we

> now have apts with gastro doctor, IEPs (fine motor and

> processing issues), developmental pediatrician, sleep

> clinic (issues waking up several times a night and we

> are all exhausted) and Endo in Boston, MA. My son is

> scheduled for a GH test on April 5. I didn't get a

> lot of info from the Endo and want to know exactly

> what to expect. Can someone help me with some

> details?


> I also want to know about the antihistamine

> (Periactin?) for increasing appetite. My concern is

> that my son is already exhausted since he's not

> sleeping well at night. I don't want him walking

> around in a daze from the meds and having this affect

> school. The pediatrician says it's short-lived and

> works for a bit but not long-term. Is this true and

> has this worked for others? Are kids who take this in

> a fog all day?


> I know Magic has some info on this and I've asked for

> them, but I'm really interested in personal

> experiences.


> Is there anyone in Boston who I could connect with?

> If so, please call me on my cell at . I

> could use some support right now. We are going

> through a tough time and our family all lives out of

> town.


> Thank you so much.


> Jill


> __________________________________________________


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