Re: 's mom

[Guest guest]

Hi 's mom,

Welcome to our group. I see you have already gotten quite a few

responses. I have an almost 12 year old son with RSS who has also

had a complicated course. You'll probably find this hard to believe,

but is actually pretty big for a RSS baby. There are plenty

of parents who post on this listserve who have babies older than

who weigh about the same as him. My son, , was

probably one of the smallest RSS babies. He was born 12 weeks early

at a weight of 15 oz. (dropped down to 12 oz.). At 1 year old, he

was only 8 lbs. He has never really eaten by mouth, and had his g-

tube placed when he was 6 months old. He still has a g-tube, but

does have the ability to eat now (though he doesn't like to).

Feeding is an issue for all RSS kids, but some have more difficulty

with feedings than others. A feeding tube can be a scary thing at

first, but I think most of us who have kids with feeding tubes thank

God that they have them, especially when our kids get sick.

If does have RSS, he will live a normal life. My son just

started middle school on Monday. He has always been in regular

classes, but receives extra help. I was very scared for him with the

transition to middle school. In elementary school, everyone knew

& his issues, & he has never been picked on or excluded from

groups due to his differences. He tells me that he doesn't know most

of the kids in his classes now, and only one kid has asked him what

was in his backpack & why he had a feeding tube. Nobody else has

seemed to notice, and the kid who asked him didn't seem to think it

was weird that he had this. is also much smaller than kids

his age, but that still doesn't stop him from fitting in. In fact, I

got a dose of reality this morning when I drove by the bus stop he

was at and saw all the huge kids standing next to him. If you can

believe it though, almost all of 's friends are older than him

by 2-4 years, and they don't care that he is much smaller than them.

The good news for you is that if you do find out that he has RSS, you

are lucky to have gotten him diagnosed at such an early age so that

you can seek treatment. The MAGIC Foundation has an annual

convention in Chicago in which more than 100 RSS families from all

over the U.S. & other countries attend. I am always amazed to see

how well some of the little ones fare as compared to how did

when he was their age. This is because they were diagnosed early,

and many of them are patients of Dr. Harbison in NY who is one of the

leading experts on RSS. Though has received a TON of medical

care his whole life, he wasn't officially diagnosed with RSS until 2

years ago, when we attended the convention for the first time. I

know we have done everything we could for his whole life, but

looking back, I know that if he was diagnosed when he was younger, we

could have done much more. Despite this, is leading a

typical pre-teen life, and his medical issues usually don't get in

the way of doing things he wants to do.

I hope I have eased some of your worries, and I would highly

recommend that you either attend the convention in Chicago next July

and/or go see Dr. Harbison at Mt. Sinai Medical Center in NY. We

have attended 3 conventions in Chicago & made 2 trips to NY to see

Dr. Harbison, and it is one of the best things we could have done for

. I live in South Florida. Where are you from?

Kim C.

> Hello,

> My husband and I are going out of our minds with worry for our 4 and

> 1/2 month old- . The genetics Drs at s Hopkins in

> Baltimore are telling us they are leaning towards a diagnosis of

> RSS. was born on his due date (3/24/05) at 5lbs 9oz & 18

> inches. He is now 10lbs 6oz and 24 1/2 inches long.

>

> We have tried everything from formulas, nipples, bottles and feeding

> techniques. He has been hospitalized for tests and a feeding tube

> when he was 1 month old for failure to thrive. We thought this was

> behind us when we found out he had reflux and the Zantac medicine

> was helping until now.

>

> is not thriving again and we are now on 26 cal formula with

> Previcid once a day. Feeding times are so stressful. He just spits

> out his formula. Today we are going on 13 hours since his last

> decent feeding which was 3 oz.

>

> If he does not " catch up " the drs are going to insert a feeding tube

> surgically. is our first child and as you can imagine we are

> worried sick. I can't sleep at night with all the talk about him

> possibly having RSS. I have searched everywhere for information and

> symptoms. I am beginning to think it is true because has one

> leg a little longer than the other, the triangular face, large

> forehead and curved pinky.

>

> Can someone please help me to understand this syndrome? Will

> live a " normal " live? Are there any similar syndromes that

> it can be misdiagnosed with?

>

> We love him unconditionally and we want to do everything possible to

> give him the best life we can. People have already begun the " boy

> he is small, he is a preemie " comments and of course I know is not a

> preemie. Someone even had the nerve to say " Wow he has a BIG

> head. " I was so upset I didn't know what to do.

>

> When I discovered this forum I finally found a little peace after

> seeing all the beautiful pictures of the children and I am hoping

> that talking to parents with help too. The children look happy and

> seem to be physically capable of most everything a child would

> enjoy. The medical jargon doesn't always speak the

> " truth " .

>

> I am hoping to hear from someone soon. You see I am so sick with

> fear and worry during this time we are also trying to cope with

> watching my Mother battle the final stages of advanced breast cancer

> and I already lost my father to cancer 12 years ago.

>

> Thank you for reading this.

>