what do need to expect with rss?

[Guest guest]

To all,

Hi. My name is Reah and my daughter,chloe, was diagnosed with

rss when she was 9 months old by a genetic specialist.Since then she

has been seeing an endo and taking periactin(appetite stimulant).The

periactin seems to help some because when we consider weaning her

from this she seems to eat less. I am still concerned of any long

term issues we may heave with her being on this antihitimine for so

long.Her endo put her on nutropin(GH) right after her second birthday

and has been monitoring her growth.It has only been 6 months since we

have started this and he says it will not be clear if she grows

better until 9 months of this drug. That is when he plans to take her

off he does not see improvement or decide to contine it. Through

reading some of your posts I have come aware of a Height/weight% and

I don't understand it,seeing how none of her doctor's have mentioned

this.Chloe is 27 months old 17lbs and 29 inches tall.should she have

not started this treatment? Is her weight and height okay for it?

also, I am having difficulty with clothes. Chloe needs about

a 12-18 month in length and about a 6-9 month in the waist. Does

anyone know of a place where I can get clothes to better fit her? We

are going to have little girl underwear made for her,to help with the

potty training. Will I have to get all of her clothes special made

her?

The doctor's also tell me that I have nothing to worry about

as far other medical conditions occurring or any learning

disabilities but when I get on the internet that is all I read. I

don't know what to believe and I just want to be prepaired for

everything. Can someone please help me?

Thank you so much,

Reah and chloe:)

[Guest guest]

Hi Reah,

I'm afraid that I can't answer alot of your questions as we are very

new to this. Noah my son, is 3 and was just diagnosed with RSS. We

are just in the process of seeing the endo and finding out about the

GH. From what I have been reading on here and in the Magic

Foundation information, for RSS kids, the GH is less effective until

they have reached catch up weight (boy I hope I'm putting this right,

it's how I am understanding it anyway) ... Our endo wasnt too

concerned about it but I believe that is a lack of RSS knowledge.

I'm going to be talking to our new pediatrition about it in length

and try somehow to get a few pounds on Noah before starting GHT. I'm

hoping to put him on Periactin.

Hopefully someone else will get back to you more extensively.

Dawna

Matt 12, 11, Kaitlyn 8 and Noah 3 RSS

>

> To all,

> Hi. My name is Reah and my daughter,chloe, was diagnosed

with

> rss when she was 9 months old by a genetic specialist.Since then

she

> has been seeing an endo and taking periactin(appetite

stimulant).The

> periactin seems to help some because when we consider weaning her

> from this she seems to eat less. I am still concerned of any long

> term issues we may heave with her being on this antihitimine for so

> long.Her endo put her on nutropin(GH) right after her second

birthday

> and has been monitoring her growth.It has only been 6 months since

we

> have started this and he says it will not be clear if she grows

> better until 9 months of this drug. That is when he plans to take

her

> off he does not see improvement or decide to contine it. Through

> reading some of your posts I have come aware of a Height/weight%

and

> I don't understand it,seeing how none of her doctor's have

mentioned

> this.Chloe is 27 months old 17lbs and 29 inches tall.should she

have

> not started this treatment? Is her weight and height okay for it?

> also, I am having difficulty with clothes. Chloe needs

about

> a 12-18 month in length and about a 6-9 month in the waist. Does

> anyone know of a place where I can get clothes to better fit her?

We

> are going to have little girl underwear made for her,to help with

the

> potty training. Will I have to get all of her clothes special made

> her?

> The doctor's also tell me that I have nothing to worry

about

> as far other medical conditions occurring or any learning

> disabilities but when I get on the internet that is all I read. I

> don't know what to believe and I just want to be prepaired for

> everything. Can someone please help me?

> Thank you so much,

> Reah and chloe:)

>