Re: From Boston-SGA-Growth Hormone Test

[Guest guest]

Hi Jill,

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

First, Can I ask a few? Where in the Boston area do you live? I

lve in southern NH.

Who is the endo you are going to see? My son see Dr. Alyne

Ricker (formerly at Children's) at Joslin.

There are many people in the Boston area on this list. Some

take their children to dR. Ingrid Holm at Children's . She

specializes in ped. endo and genetics.

My son is on periactin. It has worked for him pretty well. He does

not walk around in a fog. We give it him before dinner, so if it

makes him sleepy, then it helps him sleep through the night.

The thing about periacin is it seems to not be working but what it

does is raise the long term average of food intake so you may

not see a big difference day to day. However, overtime it is a big

help. That is the main goal of periactin and growth hormone, a

little change spread over a long period of time.

My son (who is 8) is alo on growth hormone. We give him a shot

every night. He prefers it at night when he is asleep. In fact, I will

have to finish this message soon to go give his shot.

I'll try and answer more of your questions tomorrow.

Ken M

>

> 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

>

>

__________________________________________________

>

[Guest guest]

Hi Jill,

Welcome to the group! You've found the best source for support and

information.

My g-son, is 4 yrs old. He is currently on continuous g-tube feeds,

so he hasn't had the opportunity to try Periactin as yet. From what I've

read here, the way to avoid the worst of it's side effects, is to " ramp " the

dosing. As far as the time it should be given, it seems to be " trial and

error " thing, individual to each child. Most people seem to recommend dosing

the child somewhere between 30-60 minutes before breakfast or dinner.

As I understand, " ramping " can be done a couple of different ways. The first

I've heard of is to try 1/2 the dose at dinnertime during week #1, then up

that to the full dose to week #2. On week #3 add a 1/2 dose in the morning

before breakfast, and on week #4 take that to a full dose.

The second method I've heard used is similar. Week #1 use 1/4 dose morning

and evening. Week #2 make that a 1/2 dose. Week #3 move it up to 3/4 dose,

and week #4 go to a full dose morning and evening.

As Ken said, when first started Periactin seems to cause a sudden " spike " in

appetite, but this seems to wear off. However, over the long term, increased

weight gain continues even when it doesn't seem that the child is eating

more than usual.

As far as the GH (growth hormone) testing goes, it was never done with

, and he has been on GHT (growth hormone therapy) for almost 2 years.

Sorry I can't be of more help to you with this.

Again, welcome to the group! I hope you find the answers you need.

Pat (g-ma to , RSS, 4yrs 2m old, 28# 10oz, 35 " , G-tube, GHT)

[Guest guest]

Jill, Jenn Salem here. Welcome! The beginning can definitely feel

overwhelming, but you are obviously an incredible advocate for your

son!!! You should feel very proud of yourself.

Re the Periactin, definitely wait and read the lit from MAGIC that

Dr. Harbison wrote. I have since done a massive amount of research

on this medication in preparation for the GUidebook (we parents

raised enough money to be able to research, write and print a

massive Guidebook on everything A to Z about RSS/SGA kids). I have

finished about 75% and we are in the winding down stage.

Anyway! Periactin is used for appetite stimulation primarily in

kids with cystic fibrosis (who interestingly enough may have the

same gene involved as RSS)..... Kids with anorexia often are

prescribed it, as well as people with cancer when treatment kills

the appetite. It is VERY important to know how to implement the

dosing. Please email me privately at magicrss@ mindspring.com

because I have the file and I can send it to you from my home email.

Basically, you introduce the Periactin with only 50% of the dinner

dose ONLY, every night for a week. Then you move to 100% of the

dinner dose in week 2. In week 3, you continue with 100% of dinner,

but add in only 50% of breakfast. In week 4, you now move to 100%

of breakfast and 100% of dinner dose. So it takes a whole month

before your son is actually on a whole dose.

PLUS, your son will probably sleep better at night. Why? The other

group being prescribed periactin a lot is a group of kids who are on

stimulants for ADHD and ADD, which can also interfere with their

ability to sleep, and kill their appetite. The research has found

that the best side effect for these kids was that they ALSO slept

better! HA!!!

However, that same side effect during the day can make a child

sometimes cranky. YOU control this, remember.

Some kids get over the crankiness within 3-4 days of any new dose

amount.

My own daughter can't seem to be able to take more than about 75% of

her morning dose. And she has been on Periactin for 5 years. So we

give her 100% of her dinner dose, and 75% of her breakfast dose.

And DR. Harbison just says keep trying. But the year we took her

off Periactin completely, her weight gain plummetted abysmally.

Re the GH Stim test, I would strongly recommend that you ask your

endo if your insurance has demanded the test. Here is why. Every

RSS/SGA study published in the last 5 years says the same thing --

unless an endocrinologist suspects that the child is ALSO growth

hormone deficient, do NOT do the test. The vast majority of RSS/SGA

children will test normal on this test (but will usually test low in

the IGF-1 levels). Insurance companies can use this " normal "

reading to deny GH coverage. Endos have found that it is better to

precribe the GH, and see if the insurance company comes back and

requires it.

I am typing so much, I know. The GH stim test is an IV placed, and

your child lays and watches a video or two (the test for us was so

long ago, I may be wrong here). If I recall, the nurse comes in and

draws blood every 30 minutes or something like that. If you can

avoid the test, the better.

Let me know if I have made any sense here!!!! (,

RSS, age 10, now 65th percentile in height and 15th in weight; Tyler

age 9, non RSS, 75th percentile in height and 15th in weight)

>

> 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

>

> __________________________________________________

>

[Guest guest]

Hello,

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

know.

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

>

> __________________________________________________

>