Re: New Diagnosis - Jaybeth

[Guest guest]

Hi - i'm very new to the site also. My name is Charlene and I am mom

to who is now 4 1/2 yrs. of age and RSS. Welcome - the site

is very informative and helpful. We reside in Belleville, Ontario.

Look forward to hearing more from you.

Charlene

>

> 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.

>

[Guest guest]

Thanks Charlene. I didn't expect to see two people living so close to me on

this web site. Would love to hear how is doing at 4 - did he start J.K.

this year or is he going next year?

Re: New Diagnosis - Jaybeth

Hi - i'm very new to the site also. My name is Charlene and I am mom

to who is now 4 1/2 yrs. of age and RSS. Welcome - the site

is very informative and helpful. We reside in Belleville, Ontario.

Look forward to hearing more from you.

Charlene

>

> 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.

>

[Guest guest]

Listen Beth and Charlene I am still in shock!! I have been here 6 years and in

one week TWO join that finally live close. It's like my prayers have been

answered. We 3 shall enjoy ourselves, I am sure!!!

Debby

Re: New Diagnosis - Jaybeth

Hi - i'm very new to the site also. My name is Charlene and I am mom

to who is now 4 1/2 yrs. of age and RSS. Welcome - the site

is very informative and helpful. We reside in Belleville, Ontario.

Look forward to hearing more from you.

Charlene

>

> 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.

>

[Guest guest]

Listen Beth and Charlene I am still in shock!! I have been here 6 years and in

one week TWO join that finally live close. It's like my prayers have been

answered. We 3 shall enjoy ourselves, I am sure!!!

Debby

Re: New Diagnosis - Jaybeth

Hi - i'm very new to the site also. My name is Charlene and I am mom

to who is now 4 1/2 yrs. of age and RSS. Welcome - the site

is very informative and helpful. We reside in Belleville, Ontario.

Look forward to hearing more from you.

Charlene

>

> 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.

>