New RSS Diagnosis

[Guest guest]

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)