Re: New RSS Diagnosis

[Guest guest]

You have definately come to the right place. Everyone here has a

story like yours - you'll never feel lonely again . In addition,

you will be introduced to some of the most thoughtful

individuals/moms you will ever know. I myself have found quite a

bit of comfort just hanging out on the site, reading about others

issues and learning from other's experiences as well.

Welcome. Glad you found the MAGIC website. Please feel free to ask

questions and vent as needed.

- (H) I use " H " because there are quite a few s!

> Hey everyone,

>

> It is so great to have a place to come for support and

encouragement

> and to share info on our RSS kids. My son Josiah was diagnosed in

> July 2005...it is still a working diagnosis but the genetics

> specialist is very sure this is what he has. It has been a very

> difficult road with him as he was born prematurely at 29 weeks and

> weighed 3 lbs (actually a good weight) but since then he has had

> difficulty growing. He breastfed well but often but refused solid

> food completely until he was about 18 momnths. He has always

woken

> up in the night to eat at least twice and up to four times. We

are

> thinking that he must be having problems with hypoglycemia but

> everyone time it is tested it is in the normal range even though

he

> is symptomatic (sweating, sleepy, grumpy, and about 10 minutes

after

> I feed him he perks up and resumes normal play. We are going to

see

> an endo specialist in a month so hopefully he will give us some

> suggestions about this. We are also waiting for them to decide

about

> growth hormones and to switch Josiah from an NG tube to a G tube

in a

> couple of weeks. It has been a very frustrating and often lonely

> road as person after person said that he was fine even though he

was

> falling further and further away from the growth chart. Finally

our

> pediatrician took control and admitted him this summer, and we

spent

> 3 weeks in hospital while they tried to figure out what was

wrong.

> Finally the genetics doc said I think I know what it is and here

we

> are today. I am thankful for a fairly early diagnosis and for all

> the information we have gotten so far from Magic. I am looking

> forward to getting to know you all and to learn from your wealth

of

> experience.

>

> From a fellow RSSM (RSS MOM)