New to group

[Guest guest]

I just found this group last week and have read through all the emails that I

received. I am a 36 year old single mother of two. My son who will be 16 in

September has RSS and I have a 10 year old daughter who does not. After reading

the emails about gastric tubes, Growth hormone therapy, dehydration...I feal

very lucky. My son only had a feeding tube at one week old only due to reflux.

I feal very " ignorant " I guess you could call it when it comes to RSS and the

different aspects of it. Are the feeding tubes used to help the child to gain

weight? I live in Texas and the endocrinologist that I took my son to when he

was just a few months old was, to say the least....LOUSY and NONPROFESSIONAL. I

never took him back. He was the only pediatric endo doctor around and I could

have saved my money. Every doctor I took him to gave me the same xeroxed page

on RSS. I'm guessing it was the only book that had any info in it on RSS.

I get the impression most of you have very young children with RSS. I think

if I could offer any advice to anybody about a child with RSS is self esteem

self esteem self esteem. Where my son...Matt...lacked in height...I gave him an

ego...Man what an ego. I think I almost overdid in the self esteem department

(with no regrets). He has an outstanding personality and was voted favorite

freshman at the high school...not too bad out of 335 freshman. He is extremely

intelligent. I can no longer help him with homework. He is 5' 1 " tall. He did

not have Growth hormone therapy. I could not find enough info on that 16 years

ago to put him through that. We were in and out of hospitals for one reason or

another I guess for the first 6 months. After that, it went to just

appointments for colds, infections, acne...whatever the illness may be for the

time. After reading everyones emails, I'm wondering should I have been taking

him to a specialist all along. I was feeling a twinge of guilt in reading all

about doctors visits.

I just wanted to offer any help I could give to any of you with younger

children as far as different behaviors and different signs...etc since my son is

older. And I hope I can learn more about RSS from all of you. If any of you

know, since you go to more doctors than I have been to...can you tell me if this

RSS trait will be passed on to any of my sons children. Hopefully he wont have

any until he gets out of Medical School but I need as much time to get him

prepared with all the information I can give him and he would in turn need to

inform what ever person he would get serious about. I know you probably think

I'm crazy for worrying about this now, but it has been something I have always

worried about since he went through puberty at 9 years old. I cant wait to hear

from any of you and any info you can give me. Thank you.