Re: New Diagnosis - Thanks for all of the Replies

February 3, 2006

Thanks to everyone and for all of your stories and advice. It is amazing how

you can take almost two years to find out what is going on with Sydney and in

less than 24 hours I get emails from everyone with so much information.

I read Judith's story on the Magic web site and it was so similar to mine

(twins) it felt comforting. A strange choice of words but when you know that

something is happening with your child and no one can tell you what, it is such

a relief to see a story like this and know that someone else has gone through

the same thing.

It is great to know that there are two Canadians close by that I can get advice

about local doctors and services. Deb has already been so great in getting

information for me.

It has also been very welcoming to receive all of the posts and read all about

your children and their issues. I haven't even been deterred by the volume of

posts about subject lines!!!

Thanks again. I will check in often and I am sure I will send lots of questions

out to you over the next few months as we start with our endo!

Re: New Diagnosis

Greetings Beth,

I'm and my 7 month old has RSS. My pregnancy was

monitored heavily also.. ultrasounds every week and non-stress tests 2

times a week. All my docs believed that problem after problem..

they would scare us with diffrent theroies. At one time they said she

wouldn't live. Well.. she's proving them wrong! She's 7 months old now..

and weights 11.8 pounds. She just began to roll over and we have Early

Intervention come in and work with her once a week. I'm fairly new to

all of this.. and I have to tell you.. this group of people is

wonderful! They have answers doctors don't have. I hope you are able to

find a doctor that is willing to listen to you and work with you....

This group of people are great to have for their combined knowledge on

RSS. Welcome to the group! I knoe we are all looking forward to seeing

pictures of your Sydney.

Pickett

Beth wrote:

>HI,

>

>This is my first time posting. We were just given the diagnosis

>yesterday that Sydney (22 months) has RSS. Sydney is an identical

>twin and her sister Leah is unaffected. They have a big sister

>Charlotte who will turn 4 later in February.

>

>Sydney's struggle began very early when we discovered at about 26

>weeks that she was much smaller than her twin sister. The doctors

>became quite worried at 27 weeks and I was admitted into the

>hospital where I had at least one ultrasound, sometimes two a day.

>I was able to carry the girls to 33 weeks (6 weeks in the hospital

>with a 2 year old at home!) and the doctors delivered when the blood

>flow reversed. Everyone assumed that we had twin to twin

>transfusion syndrome or placenta discordance. Sydney was 2p, 11 oz

>and 41 centimeters at birth. Her sister was 4p, 8 oz. Sydney was

>in the NICU for 6 weeks and Leah just two. Sydney was gaining

>weight very slowly although she breast feed from about week two on.

>We just could never get much in her at once.

>

>Her gross motor skills were very delayed and by about 6 months

>everyone was starting to get concerned. She had several tests done

>but nothing was showing up. At first the doctors felt that she had

>Prader Willi Sydrome but the tests all came back fine.

>

>She went through her most difficult period at 10-12 months. She was

>actually diagnosed Failure to Thrive and it looked like we were

>heading towards a g-tube. However, as a last resort our doctor

>suggested domperidone and it worked wonders for her. She finally

>got back on her curve (even though it was well below the 3rd

>percentile) and started gaining some weight.

>

>When we finally got her bone age tests results back showing severe

>delay (3-6 month age at 18 months) the geneticist made the diagnosis

>of RSS.

>

>Sydney is just finally walking this month with the help of weekly PT

>and her speech is really coming along over the past few months. She

>is much happier now that she can move around like her sisters and

>gets much less frustrated. She never did crawl so this is real

>freedom for her.

>

>Sydney is still wearing a size one shoe, making it very difficult to

>find walking shoes for her. (If anyone has any suggestions, I would

>love to find a source for very small shoes.)

>

>At 22 months, Sydney is 19 pounds and 74 centimeters. I am sure

>that we will have many appointments over the next few months and at

>this point my husband and I are just trying to gather as much

>information as possible. We live just outside of Toronto, Canada.

>

February 3, 2006

Beth

You are most welcome and we love the questions. Nothing is too silly or too lame

for us because I can guarantee you 3 of us have either wanted to ask it, have

asked it or were about to ask it! So you ask away and we will forge on with our

support and advice! It's great to have you.

Deb