Hello and a little advice

[Guest guest]

Hi my name is , my nephew is one year old and was just

diagnosed with RSS. I've read up on RSS and I understand much of

what is required. I want to help my sister and her husband deal with

this.

is one year and weighs 14lbs. He doesn't seem to have any

health issues and is right on schedule for developement. He doesn't

sleep through the night and seldom naps during the day.

I'm looking for advice on what is the best way to help her?

When your child was there anything that people said or did that you

found especially helpful?

Thanks!

[Guest guest]

hi susan!!

welcome to the group!! maybe one thing you can do is have your

sister check out the list serve as well and the Magic Foundation's

website www.magicfoundation.org they are a nonprofit support group

for families of kids and adults with growth disorders. they can

send all kinds of info to your sister about rss if she becomes a

member. they also put on a wonderful convention every july in

chicago. we went last year for the 1st time and it was a great,

exciting and educational experience. also where are you guys from?

there is a dr in nyc who is the expert in rss in the us.

if you would like you can email me at jlcals2003@ yahoo.com (no

space after @)

my son is 4yrs old. christopher is now 27lbs 8oz 36 1/4 " . he also

met all his milestones on time. he is healthy and smart little

boy. he attends preschool 5x a week in the elementry school's

preschool disabled class. he is in this class so he can get some

slight OT. he eats on his own, but takes periactin which is an

appitite stimulant. he is possibly ADHD and OCD which we seam to be

able to manage with a daily routine and structure and not medication

at this point. he has assmentry on his left side (his left leg is

1cm shorter and his left hand is smaller as well as the thickness

in both his left leg and arm are smaller) he doesnt require a lft

since it is not that much of a difference.

when your nephew wakes in the middle of the night is he hungrey or

thristy? some rss kids suffer from low blood sugar. he should be

fed every 2-3 hours to help with this. there are also other tricks

that can be used such as adding i believe corn starch to his bedtime

milk (jen s or jodi z?!?) Magic has an article about that as well.

please email mail me if you would like, i would love to hear more

about cooper and share more about christopher as well.

jodie c. (one of 4 jodi's on the list)

(nicholas-6 1/2 nonrss, christopher-4 rss 27lbs 8oz 36 1/4 "

periactin, ADHD, OCD, Assmentry (left side 1cm), ght genotropin

(waiting to restart as per dr h), johnathon-19m nonrss)

>

>

> Hi my name is , my nephew is one year old and was just

> diagnosed with RSS. I've read up on RSS and I understand much of

> what is required. I want to help my sister and her husband deal

with

> this.

> is one year and weighs 14lbs. He doesn't seem to have any

> health issues and is right on schedule for developement. He

doesn't

> sleep through the night and seldom naps during the day.

>

> I'm looking for advice on what is the best way to help her?

>

> When your child was there anything that people said or did that

you

> found especially helpful?

>

> Thanks!

[Guest guest]

hi ,

When my son was one ,we didn't have the RSS diagnosis yet. You asked if

there was anything anyone said or did that was especially helpful. The stress

gets rough. Breaks are good as is support and company. Uneducated and

unsolicited advice, I guess, would be the worst. (in my opinion)

She's lucky to have you asking and learning and caring about this with her.

Wishing you all the best.

Kathy (Jack, 6, non-RSs, Willie, RSS, 4, 25 lbs, 34 " , Periactin and Zantac)