Reply to Annette

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Hi, Annette! My name is Jodi and I am one of the " senior " members of this

group. I have a son named Maxwell (Max) and he is 13. There are not too many

of us with older kids on this list, but there are more than there used to be, so

I'm sure you will hear of more as the holidays wind down and people have more

time to respond.

Now, about Max...Max was 13 in July, so we are rounding the corner for looking

toward 14. YIKES!!! Unfortunately, Max has had many medical difficulties along

the way since he was born, then diagnosed at 8 months, but he is a great kid.

Red hair, a smile that is just as warm as can be, compassionate, outgoing,

independent (in most cases) and learning to stand up for himself.

Max has been on gh treatment since he was just about to turn three years. We

were very concerned about this big step, but he had severe hypoglycemia, very

low muscle tone, no appetite to speak of and a few other things I don't recall,

so we felt we had no choice but to give it a try. We were told by the " famous "

Dr. Harbison that he would be much healthier if we did this. I am happy to say

that almost immediately his growth picked up and it seemed like no time before

he reached the 5% on the growth chart. His appetite improved, his asthma was

better, and his strength really increased. HOWEVER, we noticed over the past

year that his growth has slowed down tremendously and Dr. H. has concluded that

he has developed growth hormone resistance. Max was also diagnosed with

Tourettes Syndrome in August, another obstacle to overcome - not yet reached,

though.

Max is now about 4'9 " and weighs about 90 pounds. I'll know more when I take

him to see Dr. H. on January 4th. (We live in NJ and she is in NYC.) He used

to be a skinny thing, but the medication we have given him for the Tourettes has

increased his appetite unlike anything I have ever seen. We are hoping that the

increase in appetite will add to his growth, but I don't think it has. We are

now teaching him to eat lower calorie foods and to control his urge to eat. Who

would have thought that for an RSS child????

Now that you know so much about Max, how can I help you? One thing I can

suggest is that you join MAGIC Foundation. It is an organization that is

devoted to helping children with growth disorders. We have our own RSS Division

which is headed up by Salem (magicrss@...) and I am the

Email Coordinator for that division. I am NOT, however, writing as a rep of

MAGIC. I truly am writing as another concerned parent who wants to help.

MAGIC, however, has so much to offer. There is a quarterly newsletter, a

database of characteristics of RSS and the children who have it, a medical

library of RSS-related articles (copies are free to members), a yearly

convention in Chicago (July), videos of the speakers at each convention, and I'm

sure more that I just cannot think of right now - oh, a growth chart for RSS

children. You can check out MAGIC by going to www.magicfoundation.org.

Please feel free to contact me or at any time. And use this list, too!

I hope I have helped. By the way, lives in California, so she may have

a doctor or two to recommend.

Jodi

New Member

Hi! My name is Annette, mom to Allie, 9.3 years old and Evan 12

years old. I haven't been involved in a RSS support group since it

moved to this site back in early 1999. The only name I recognize is

Ken M. Hi Ken! Allie was diagnosed with RSS by her endo when she

was 6 years old, although the geneticist never agreed (she never came

up with anything else, though). Allie weighs 40 lbs and is 45 inches

tall. She is currently not taking any medications. Her doctor is

still not too eager about doing anything for her. She has had

numerous ear problems, resulting in 50% hearing loss in one ear and

20% in the other. She also has terrible teeth, we just recently

started all of the orthodontia work.

I've gone back and read quite a few of the postings and it appears

that the majority of parents in this group have very young RSS

children. Are there some parents in this group who have older RSS

kids? Does anybody know of a good doctor in Northern California?