Re: 's diagnosis

[Guest guest]

Hi ,

I think many of us have played the " waiting game " in regards to a

diagnosis, some longer than others. We waited YEARS for an accurate

diagnosis, and that made me realize that doctors don't know

everything! When doctors aren't sure of a diagnosis, it is easy to

say, " he has a syndrome. " Unfortunately, many syndromes share

similar characteristics. If you want to know whether has RSS

for sure, Dr. Harbison in NY would be able to tell you immediately.

Also, do you have a picture you can post of him in the photos

section? I'm sure many of the listserve members could look at it and

offer you opinions as to whether or not he has the RSS look.

Kim C.

> Message: 5

> Date: Fri, 12 Aug 2005 14:40:39 -0000

>

> Subject: 's Mom.....Thank you all for your support!

>

> I just want to say thank you to everyone who has answered my post.

> All of you have made me feel more at ease. I am so grateful to have

> found such a wonderful place to find answers and help during this

> stressful time. It also comforting to know that I am not alone.

>

> The Drs have not reached an official diagnosis to date and we are in

> the waiting game. Waiting to see the " scale " each week. My gut

> instincts tell me that he does have RSS. is

> still not eating enough so I am preparing myself for the feeding

> tube. We are almost welcoming it because it did work for him when

> he was hospitalize at one month old. He managed to gain weight.

>

> I do have one question that I hope someone may be able to answer.

> When I asked our peditrian " Do you think has RSS? " his reply

> was " I think he has some kind of syndrome. " This has been driving me

> crazy since yesterday. I have been researching the net and have not

> been able to track anything down.

>

> So my question is are there any similiar syndromes to RSS that he

> may be refering to?

>

> Thank you so much for sharing your stories! :-)

> You are all in my thoughts and I wish everyone the best.

>

> Ps. The Magic Foundation website is wonderful.

>

> -

> " 's Mom "

> (Drs leaning toward RSS diagnosis but not official yet.)

> Baltimore, MD

>

>