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

[Guest guest]

Hi ,

It's amazing how when you're in need comfort or

answers how many people jump up for you on this

listserve. Like everyone said, we are a big family

here.

I'm not sure what the pediatrician may be thinking but

as you can see from the Magic Foundation there are a

lot different syndroms so it could be he is not sure

and is leaving that up to the geneticists and/or

endocrinologists.

It is very upsetting just waiting between appointments

to find out what's next. When your mind is running

wild, time is the worse enemy.

B

5 1/2 and Kelli 3

--- slmi2005 wrote:

> 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

>

>

>

__________________________________________________

[Guest guest]

HI

What your doctor probably meant was that further testing would be needed.

RSS is diagnosed more through elimination then anything else. It's " not "

this; it's " not " that; so it must be RSS. There is a genetic test called

UPD#7 (I think, I may have the letters mixed up) but that is a cautious

test. First it requires mother, father and child's blood to be tested. Last

I heard the only facility that ran the test was up here in Toronto (where I

am) so it takes several months for a reply. And then, only 10% of the kids

will show this genetic test as positive. My son did not. But he is

definitely RSS; the children all have a common " look " and the first time we

attended the convention in Chicago, we were amazed at how much the other

children resembled my son.

You are still at the early stages yet, so don't fret too much. Your doctors

will have to begin various testing but you have alot of time, you are lucky.

No one thought there was anything wrong with my son until he was 2; and then

it took a number of years to finally get the diagnosis and then he didn't

get to start GH until he was 8 years old. It's still better than nothing but

I wish we could have started it when he was 2 or 3.

Debby

'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

>

>

>

>

>

>

>