Re: New to list - Jenni

[Guest guest]

Hello Jenni -- My name is too. Welcome! I was thinking

when I read your letter just how far my own daughter has come in the

last 3 years. My daughter has RSS, and she is 8 years old,

but she is now 52 pounds and 52 inches tall. 17 lbs and 6 inches

bigger than your daughter -- and all that is the incremental stuff

she has gained in the last 3 years from her meds. WOW. It truly

doesn't hit home until you compare it against another RSS child.

To answer your questions, stomach aches and headaches can be a side

effect of other problems that RSS children can have. The stomach

aches can be medical, from silent reflux or constipation(which many

of our children have); it can be psychological, possibly from

feeling different (is she teased at all?).

I would strongly recommend that you contact MAGIC tollfree at 800-

3MAGIC3 and ask them to mail you the blue RSS brochure as a start.

Read this. Do you mind my asking where you live? We have this big

convention in July in Chicago, and last year we had 120 RSS/SGA

families attend. We have a big group of 7-9 year olds that all go

year after year, and your daughter would be welcomed in a BIG

way!!! The kids just swim and play and dance and hang out and

become " bestest friends " -- and somehow through all this play, there

is a feeling of comfort and acceptance as they realize that WOW!!!

all these kids are small and skinny like me. For my daughter, she

still talks about getting to know other kids who " get a shot every

night like me. " For us parents, there are medical presentations all

day long for Friday and Saturday where we learn TONS of info. Then

there is a lot of social stuff too.

If you have any questions, you can email me privately at magicrss@

mindspring.com.

I would love to meet your daughter!!! (, age 8, RSS

and Tyler, age 7, non-RSS)

> Hello-

>

> I just found this list the other day.. I have a little girl named

> Madeline who will be turning 9 in April. She was diagnosed with

RSS

> in May of 2001. It took us a very long time to figure out what

was

> happening with Madeline. At almost 9 years old, Madeline weighs

> 35lbs and is approximately 46inches tall.

>

> I do not know much about RSS and really have not had a lot of

> problems with Madeline except for lately, she always has stomach

> aches and head aches. I recently started searching on line again

to

> see if maybe her stomach aches and head aches may be related to

> RSS.

>

> Any advise or input would be greatly appreciated.. I am going to

> spend some time looking at past postings to see how we fit in here.

>

> Thank you for your time and any thoughts are greatly appreciated.

>

> Jenni V