Re: anyone else from cincinnati, ohio?

[Guest guest]

,

Hi. I am Jodi, mom to who is almost 28 months old....who is

messing with my chair right now so I can hardly type! LOL! )

Anyway, we are in Newark, Ohio. About 45 minutes Northeast of

Columbus. sees many doctors at Children's Hosital in

Columbus. His geneticist mentioned RSS, but when his UPD7 study came

back negative, she never persuded it any further, so the ball was

dropped. We didn't get a confirmed diagnosis until we went to New

York and saw Dr. Harbison who specializes in RSS kids. She is

awesome and she made a complete and dramatic turnaround in 's

case, as he was 17 months old weighing only 10 lbs. 10 oz. when we

saw her. He gained weight like you wouldn't believe in just a few

short months after she had changed his feeding regimine around. Now,

almost a year later, he is more than 8 lbs. heavier, and would be

more had she not reduced his tube feedings due to that fact he was

getting too " chubby " for his height! ) Go figure. Now we are

waiting to see how his growth goes for the next few months to see if

we will be able to start growth hormone soon. If it is possible for

you, it is definitely worth going to see her. After seeing her,

's muscle tone dramtaically changed in that he got stronger and

was able to hold his head up, and stand shortly after gaining just a

few pounds.

Email me if you would like at rollison@ core.com (no space after the

@ sign)

Take care,

Jodi R.

> Hi,

> Just wondering if any of you are from cincinnati ohio and got your

> diagnosis from the children's hospital or anywhere else around here.

>

>

> mom of autumn 8 mos. poss RSS