Size

[Guest guest]

My daughter, Abby, started growth hormone in April. We haven't been

back to the doctor yet, but my measurements seem to indicate she's

growing. I say " seems " because I'm so unsure of taking my own

measurements. One small increment off could mean you're kidding

yourself.

I don't remember seeing anyone with measurements as small as Abby's.

Maybe I've missed it. She is 6 years old, 23 pounds and 38.5 inches

tall. Does anyone else have a daughter, or even a son, with

measurements as small as those?

By the way, I finally figured out how to get pictures posted and put

some under " Abby " 's name.

Thanks,

Sherri

Mom to 6 year old twins - Abby (RSS) and Sam (nonRSS)

[Guest guest]

Sherri,

n is really small too even for an RSS kid. He'll be 4 next

month, weighs 19 lb, only because he was sick, and about 24 " tall.

Has your daughter ever had a g-tube? Did you have to wait to start

GH because she didn't weigh enough?

n is 100% g-tube fed, had the triple procedure and still isn't

making any progress. I don't see him being ready for GH any time in

the near future because he can't possibly take in more than he is

now.

Cindy

[Guest guest]

Sherri - you are right that Abby is on the smaller side, but not

totally abnormal for RSS. My daughter was 38.5 inches at 5 yrs old,

but Abby's weight is what is quite low. Has your doctor talked to

you about ways to keep her weight up as her height begins to

skyrocket? The reason I say this is that what no one failed to tell

us was how hard it is when your child's height suddenly DOUBLES in

velocity (going from let's say 2 inches a year to 4 inches), now

they have to DOUBLE their weight gain too (so instead of gaining 3-4

pounds a year they have to gain 6-8 pounds a year!).

I honestly believe that if wasn't on GH, we probably

wouldn't need the Periactin at this age (8 yrs old) but because her

height is still rapidly growing, it has been essentialy to getting

those extra calories into her....

> My daughter, Abby, started growth hormone in April. We haven't

been

> back to the doctor yet, but my measurements seem to indicate she's

> growing. I say " seems " because I'm so unsure of taking my own

> measurements. One small increment off could mean you're kidding

> yourself.

>

> I don't remember seeing anyone with measurements as small as

Abby's.

> Maybe I've missed it. She is 6 years old, 23 pounds and 38.5

inches

> tall. Does anyone else have a daughter, or even a son, with

> measurements as small as those?

>

> By the way, I finally figured out how to get pictures posted and

put

> some under " Abby " 's name.

>

> Thanks,

> Sherri

> Mom to 6 year old twins - Abby (RSS) and Sam (nonRSS)

[Guest guest]

,

Our doctor didn't say anything about Abby's weight, but I had the

feeling she (the doctor) was pretty new to GH treatment, although she

seemed pretty familar with the RSS diagnosis.

Since we started GH, the amount Abby eats has increased tremendously,

which has amazed us. I didn't know what to expect and was worried

about the amount of food she ate, but so far it hasn't been a

problem. I think she's doubled and even tripled the amount of food

she's eating. And she eats much more quickly, whereas before GH she

would sit for an hour pondering over the same bagel.

Sherri

[Guest guest]

Hi Sherri,

My son owen is 5 1/2 and weighs 26lbs and is 37 inches. I think mty

owen is very small even for an rss child. He is not on anything. Im

not sure i want him on anything..he is doing perfectly well.

lisa

> My daughter, Abby, started growth hormone in April. We haven't

been

> back to the doctor yet, but my measurements seem to indicate she's

> growing. I say " seems " because I'm so unsure of taking my own

> measurements. One small increment off could mean you're kidding

> yourself.

>

> I don't remember seeing anyone with measurements as small as

Abby's.

> Maybe I've missed it. She is 6 years old, 23 pounds and 38.5

inches

> tall. Does anyone else have a daughter, or even a son, with

> measurements as small as those?

>

> By the way, I finally figured out how to get pictures posted and

put

> some under " Abby " 's name.

>

> Thanks,

> Sherri

> Mom to 6 year old twins - Abby (RSS) and Sam (nonRSS)

[Guest guest]

O.K., you guys had me curious so I dug out my 3 inch medical records

binder on Charissa. At 5 1/2 years she was 29 pounds and 37.5 inches. At

6 years old she was 34 pounds and 38.5 inches. Keep in mind that she was

GHD, and had been on Protropin injections since she was 30 months old

(when she was 13 lbs 11 oz and 28.75 in.) , and was part of the original

study on the effect of Periactin/Cyproheptadine on the growth rate of

GHD kids when she was age 4 yr. 3 mo until 5 yr. 3 mo. (She was on

Periactin the 1st 6 mo, off the next 6 mo, and put back on it for good

at age 5 yr. 3 mo.) In my opinion, the meds were the only reason she was

this big at this age. And the meds are the only reason that Charissa is

now full-grown at 5 ft. 2 inches, 112 lbs. I thank God every day that

synthetic GH went on the market just a few months before Charissa needed

it!

in Alaska, mom of Charissa - age 19, just graduated from High

School and starting a career-development program in the fall.

Misdiagnosed RSS until age 15 years - now we know she has a chromosome

abnormality: the only person in the world known to be diagnosed with

del(17)(13.3) Dr. H. was right - Charissa may be one-of-a-kind!

< Re: Size

Hi Sherri,

My son owen is 5 1/2 and weighs 26lbs and is 37 inches. I think mty

owen is very small even for an rss child. He is not on anything. Im

not sure i want him on anything..he is doing perfectly well.

lisa

> My daughter, Abby, started growth hormone in April. We haven't

been

> back to the doctor yet, but my measurements seem to indicate she's

> growing. I say " seems " because I'm so unsure of taking my own

> measurements. One small increment off could mean you're kidding

> yourself.

>

> I don't remember seeing anyone with measurements as small as

Abby's.

> Maybe I've missed it. She is 6 years old, 23 pounds and 38.5

inches

> tall. Does anyone else have a daughter, or even a son, with

> measurements as small as those?

>

> By the way, I finally figured out how to get pictures posted and

put

> some under " Abby " 's name.

>

> Thanks,

> Sherri

> Mom to 6 year old twins - Abby (RSS) and Sam (nonRSS)

[Guest guest]

-Hi I was wanting to reply to this msg to, my son is 5 Yrs old to and

he weighs 28 pounds and is just now 37 inches he has just now gotten

on the growth chart and is 3rd percentile! He wears a 3 to 6 month

bathing suit and 12 to 18 month clothes and a 6 infant shoe!! He has

Rss and is mild but has other problems as well!! Our boys sound alot

alike!! Just wanted to let you know your not the only one... He is

going to kindergarten this year and I think it is going to be a major

milestone.. Hugs Mom to and Brittney (11in two

weeks)!!! He is on Growth Hormones but only for a month

now!!

-- In RSS-Support , " nightsky96 " <lisa.cossette@c...>

wrote:

> Hi Sherri,

>

> My son owen is 5 1/2 and weighs 26lbs and is 37 inches. I think

mty

> owen is very small even for an rss child. He is not on anything.

Im

> not sure i want him on anything..he is doing perfectly well.

>

> lisa

>

>

>

>

> > My daughter, Abby, started growth hormone in April. We haven't

> been

> > back to the doctor yet, but my measurements seem to indicate

she's

> > growing. I say " seems " because I'm so unsure of taking my own

> > measurements. One small increment off could mean you're kidding

> > yourself.

> >

> > I don't remember seeing anyone with measurements as small as

> Abby's.

> > Maybe I've missed it. She is 6 years old, 23 pounds and 38.5

> inches

> > tall. Does anyone else have a daughter, or even a son, with

> > measurements as small as those?

> >

> > By the way, I finally figured out how to get pictures posted and

> put

> > some under " Abby " 's name.

> >

> > Thanks,

> > Sherri

> > Mom to 6 year old twins - Abby (RSS) and Sam (nonRSS)

[Guest guest]

Cindy,

Abby has never has a g-tube. We didn't wait to start GH because

of her weight, but because she is very healthy and seems confident

with herself. We finally made the decision after she started school

and we saw her with other children.

I think you're right to wait until you think n is ready before

starting GH. That's what we did with Abby and so far it seems to be

the right decision.

Sherri

[Guest guest]

Hi my son is also 5 Yrs old and he weighs 27.5 pounds and is

38 inches. He wears 3T-4T clothing and has a size 8 1/2 shoe. He has

RSS and is mild but has asymmettry on his whole left side.

Eventually we would like to start GH (big decision) He has been in

preschool for 2 1/2 years. He will be going to kindergarten in the

fall. He will be in an inclusive classroom. There are 10 children

without problems and 5 children who may need the assistance of the

special ed teacher. does well in school but has trouble

attending at group time. He has an excessive amount of energy at

times and loves to touch the other children. He can be a handful.

He has an older brother who is 18 and an older sister who is 16.

says things that an older child would say. I couldn't go to

the show with him and his dad(I had to work) and I asked if he

wanted to wait till I could go, his reply was that he needed to

spend some QUALITY time with his dad. What could I say after that.

My family is from Chicago and I will be attending the convention

along with my two older children and . We will be at the hotel

on Thursday afternoon. My two older children get together with the

friends they've met at the convention so its usually and I. I

would love some company during the talks, Fri and Sat dinner or

anytime at the convention. My also sounds like and

Owen. Can't wait to see everyone new and old.

Kathy (mom to 5yrs-RSS periactin, Matt 18yrs, and 16yrs)

***My daughter said if there are any new teenagers coming she would

love to meet them and introduce them to her friends.***

> > > My daughter, Abby, started growth hormone in April. We

haven't

> > been

> > > back to the doctor yet, but my measurements seem to indicate

> she's

> > > growing. I say " seems " because I'm so unsure of taking my own

> > > measurements. One small increment off could mean you're

kidding

> > > yourself.

> > >

> > > I don't remember seeing anyone with measurements as small as

> > Abby's.

> > > Maybe I've missed it. She is 6 years old, 23 pounds and 38.5

> > inches

> > > tall. Does anyone else have a daughter, or even a son, with

> > > measurements as small as those?

> > >

> > > By the way, I finally figured out how to get pictures posted

and

> > put

> > > some under " Abby " 's name.

> > >

> > > Thanks,

> > > Sherri

> > > Mom to 6 year old twins - Abby (RSS) and Sam (nonRSS)