what should i expect with rss?what is this weight/height % about?does anyone know where I can find small clothes?

[Guest guest]

Hello Everyone,

My name is Reah. 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 been taking periactin(appettite stimulant).Her endo started

her on neutropin(gh) after her second birthday.She is 27 months old,17lbs,and 29

inches tall. I am now concerned after reading some of the posts about

weight/height percent. Should chloe have gained more weight first?How do you get

a child to gain weight when they are uninterested in eating food?She had PT by

babies can't wait when she was 9 months until 15 months,at which she began

walking. She appears to be age approprate in all activities and talks,counts non

stop.She has only been hospitalized once for roto virus which was a

nightmare.However she does have reoccurrent ear infections,should her ped have

put tube in her ears?Chloe's doctors also tell me I have nothing to worry about

with future medical problems or conditions due to her rss, not even

any learning disabilities.When I look on the internet it says diff. Do Ineed to

be looking for things and if so what? Who do I believe?

Can anyone tell me where I might find small clothes? Chloe

would need about a 12-18 month in length and a 6-9 month in the waist. We are

having little girl underwear made for her.If anyone could help me with any of

this it would be great! I have never talked to anyone who had a chlid with rss

before

Thank you so much,

Reah and Chloe:)

---------------------------------

Yahoo! FareChase - Search multiple travel sites in one click.

[Guest guest]

Hi Reah,

I will try and answer some of your questions.

First, your doctor is right. There are no future medical conditions

due to RSS.

Try boosting the calories in her food. If she like yogurt, try Gogurt

and add some kayro syrup or maple syrup. If she likes vegetables, add

some butter to them. Things like this, while they make only a small

difference everyday, over a year or 2 add up to a big difference.

Some RSS kids do have developmental delays but these are usually mild

and the kids usually catch up. I do not think the developmental delay

occur at a higher rate than kids without RSS. I'm sure some one will

correct me if I am wrong.

As for ear tubes, that depends on how frequent and severe her ear

infections are. This you must discuss with her pediatrician.

When my son started growth hormone, he was already on periactin also.

It took a long time for the growth hormone to take affect. It wasn't

until the doctor had increase the dosage a couple of times before we

saw any meaningful results.

My son too had no interest in food. So we let him watch videos while

we feed him. Then when he could feed himself, he still got to watch

videos. As soon as he stopped eating the TV was turned off. Meals

would often take the entire movie but at least he ate.

Some of the information on the internet about RSS and many many other

conditions is incorrect. Unfortunaltely, you will have to use your

judgement, experience, and friends to sort out what is correct or

not. Also, ask us, in many cases members on this list have been

through something and we can offer suggestions. However, be careful

because we are sometimes wrong too.

Last, we found small clothes at the Gap (kinda pricey), Kohl's, and

JC Penney's. I am not a shopper unless it is for power tools or

computer equipment so you'll have to get more info from eveyone else.

I hope this helps.

Ken M

>

> Hello Everyone,

> My name is Reah. 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 been taking periactin

(appettite stimulant).Her endo started her on neutropin(gh) after her

second birthday.She is 27 months old,17lbs,and 29 inches tall. I am

now concerned after reading some of the posts about weight/height

percent. Should chloe have gained more weight first?How do you get a

child to gain weight when they are uninterested in eating food?She

had PT by babies can't wait when she was 9 months until 15 months,at

which she began walking. She appears to be age approprate in all

activities and talks,counts non stop.She has only been hospitalized

once for roto virus which was a nightmare.However she does have

reoccurrent ear infections,should her ped have put tube in her ears?

Chloe's doctors also tell me I have nothing to worry about with

future medical problems or conditions due to her rss, not even

> any learning disabilities.When I look on the internet it says

diff. Do Ineed to be looking for things and if so what? Who do I

believe?

> Can anyone tell me where I might find small

clothes? Chloe would need about a 12-18 month in length and a 6-9

month in the waist. We are having little girl underwear made for

her.If anyone could help me with any of this it would be great! I

have never talked to anyone who had a chlid with rss before

> Thank you so much,

> Reah

and Chloe:)

>

>

> ---------------------------------

> Yahoo! FareChase - Search multiple travel sites in one click.

>

>

[Guest guest]

Reah,

I think for far have done the right thing. This site is great

to answer all question you may have, if one person can not answer

your questions someone else maybe able to answer your questions.

About buy clothing Gaby is also driffent size on the bottom and

on the top. I brought a cheap sewing machine and take in the waist,

so they fit her in the lenght and waist. on the uderwear, if you

have a swapmeet, that sell mexican products you may find small

underwear. I have been able to find size 0 for Gaby. I live close

to Los Angeles, CA for there are many swapmeets here. If you need

any underwear let me know and I can buy you some and send them toyou.

As to what you read and what the your doctor saws, each child is

drifferent, some are worse and some are a better. Gaby is small but

otherwise she is healthly and within what is concerned normal in her

intelligence. She does not need a feed tube so far and she has been

taking GH since she was two and at first we did not see a

difference, but when Dr. Geffener change the dose she start to grow

a little more.

I wish you and Chole the best.

Stella

mother of Gaby RSS 3 yrs 22 lbs, Amani 8yrs non-rss, Andres 6 yrs

non-rss.

>

> Hello Everyone,

> My name is Reah. 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 been taking

periactin(appettite stimulant).Her endo started her on neutropin(gh)

after her second birthday.She is 27 months old,17lbs,and 29 inches

tall. I am now concerned after reading some of the posts about

weight/height percent. Should chloe have gained more weight first?

How do you get a child to gain weight when they are uninterested in

eating food?She had PT by babies can't wait when she was 9 months

until 15 months,at which she began walking. She appears to be age

approprate in all activities and talks,counts non stop.She has only

been hospitalized once for roto virus which was a nightmare.However

she does have reoccurrent ear infections,should her ped have put

tube in her ears?Chloe's doctors also tell me I have nothing to

worry about with future medical problems or conditions due to her

rss, not even

> any learning disabilities.When I look on the internet it says

diff. Do Ineed to be looking for things and if so what? Who do I

believe?

> Can anyone tell me where I might find small

clothes? Chloe would need about a 12-18 month in length and a 6-9

month in the waist. We are having little girl underwear made for

her.If anyone could help me with any of this it would be great! I

have never talked to anyone who had a chlid with rss before

> Thank you so much,

> Reah

and Chloe:)

>

>

> ---------------------------------

> Yahoo! FareChase - Search multiple travel sites in one click.

>

>