Re: New Diagnosis

[Guest guest]

Hi Jaybeth,

Welcome to our group. I hope we can answer your questions.

Sorry I can't help with the shoe question. Much of what you

described sounded like my son. He is now 8, taking growth

hormone and periactin. He is doing great.

My son did not stand up until he was 18 months. he was almost

2 before he talked. We were teaching him sign language.

Now, like I said he is doing great.

I think you are about to become very good friends with Deb B

who also lives in Toronto.

Anyway, welcome to our group. Please feel free to ask anything.

Ken M

>

> 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]

Hi. Welcome to the group! Wow, sounds like you had a tough

pregnancy. I can't imagine that all with a 2 yr old at home. I have

a 24 mos old RSS daughter Autumn. I found out about the RSS when she

was 7 mos old and joined this group. I have recieved so much help and

support with everything that has gone on with Autumn since. She is

now 18.5 lbs. She was 17.5 and 30.25 inches at 2 yrs and that was

just 2 weeks ago! She had a lot of issues with refusal to eat/drink

to the point of hospitalization a few times. She made herself so

sick and unhealthy that she had a g-tube placed 3 mos ago at 21

mos.as a final resort. She was 16 lbs at that time and was 15 lbs 11

oz at 1 yr, so she was not well. She was always pale and sick and

then it would make her not want to eat even less. We have tried the

appetite stimulant for a year with no effect. We are starting her

back on it now to see if maybe anything will happen this time but

right now the g-tube is working wonders.

I also have a 6.5 mos old daughter Summer who was born SGA and no

catch up growth. She was IUGR adn induced for stopping her growth and

low water. At 4 days was put in the NICU for reflux and malacia that

made her oxygen lower drastically and seh would stop breathing and

turned blue. She came home a week later and is doing so much better

now at 6.5 mos although her reflux is still a little overwhelming!

Her geneticiist suspects RSS with her too, but we are just working on

tracking her growth now. She is doing well for her curve under the

3rd so far. I had a hard time bf her after birht too. She was so

little, had a small lower jaw so very tought to latch on, and also

would turn blue and pass out after 30sec to a minute of nurseing and

I couldn't rouse her fore about 10-15 minutes at least. It was

horrible They wanted to ng tube her but I told them to give me more

time and if it didn't work, then they could. I was up around the

clock and all i did was try to bf. We had to work very hard with

therapists, docs, and monitors but I somehow got enough in her to

prevent the tube. That was a tough time. She still doesn't take

much, but she is doing well and acutally looks chunky for her small

size/weight.

As for the shoe question, I don't know what stores are where you

live, but here in Ohio I have luck at payless and target. I have

found prewalkers, size 0-4 that are narrow and just like the larger

walker versions with normal soles...not the padded baby kind, so

Autumn has done well with those. She is now a size 3 but started

walking in a 1 I believe, or maybe it was a 0...

mom to Autumn RSS 24.5 mos, Summer SGA Possible RSS 6.5

mos, and 2 big brothers Ocean 3.5 yrs, Skye 7.5 yrs

>

> 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]

Beth - good morning! Welcome to our group. We are very glad to

have you. I think you will enjoy the comaraderie we all enjoy - I

have received a TON of support through this group, of which has made

a difference in the decisions I've made for my son's healthcare.

I'm so glad to know that you have found us - you have definately

come to the right place.

You mentioned you were looking for information. If I may be bold

and say I have a few suggestions for you. I'm not sure where you

are in the process of finding doctors and such but there are a few

things that I feel necessary to mention to you as you start your

journey. First, hypoglycemia seems to be an important issue with

our children. There are varying degrees amongst our children and

there seems to be a trend recently that I personally feel needs to

be addressed. If you have not found an endocrinologist that meets

your needs, I would make that a priority on your list. I gathered

from your message though that you are INCREDIBLY on top of things!!

You are doing such a great job already! There is someone that I'm

sure you will meet here - her name is Deb B - she lives in Canada as

well. I think she will be of great assistance to you - and she's

very funny too. The other thought or suggestion I have is that if

Sydney is not being followed by a GI (which I'm betting she is) that

would be a great avenue to research as well. Our children have

tendencies toward reflux and gut dysmotility issues and monitoring

that early on to help rule those issues out would be an added plus

for Sydney.

My son, Ian, is 33 months. He was diagnosed at the age of 9 mos -

of which was due to my advocacy - or for lack of a better word -

strong persistence! He is actually on the taller side, but quite

skinny. At 86 cm (his shorter side or 34 inches) and 10.5 kg (23

lbs) - we recently had our share of difficulties. We have

difficulties managing Ian's blood sugars and he recently received a

G-tube. He had only weighed 21 lbs for the last six months - until

his recent ng tube and then G-tube. He currently has no signs of

reflux or delayed gastric emptying. Now at 23 lbs and continuous

feeds during the night - he looks SO much better! Ian has cranio

facial abnormalities and his teeth are VERY crooked. We too have

been through nutritionists, speech therapists, feeding specialists,

GI docs, Endos, cranio facial specialists, geneticists and several

Peds. We are finally on the right track with physicians and Ian is

doing very well.

More importantly though, I have been given such a generous amount of

support on this listserve - and we so much welcome you here. Please

feel free to vent, chat, ask questions - or whatever you need. We

are here for you. It can be a very scary experience - we ALL know.

But, we will assist you in whatever way we can.

Nice to meet you!

- H () - I sign H since there is another on this

listserve. Makes it easier <grin>.

ps - feel free to browse the photos section. I was always amazed to

find that many of these children look like Ian!!

>

> 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]

Hi Beth,

Welcome to the group! This is a great place to get lots of

information. Quickly, I too have twins. has RSS and

does not. My twins are turning 6 on Saturday. didn't walk

until he was about 2 yr 4 mo. He still receives PT, OT and speech.

The strides he has made in the last few years are amazing.

didn't grow at all from 31 to 33 weeks at which point they induced

labor. was born at 2 lb 1 oz, while Becca was 5 lb 3 oz.

Becca was in the hospital for 2 weeks (NICU for 1 1/2 and intermediate

nursery for 1/2). was in the hospital for 2 months (2 weeks in

NICU and the rest in the intermediate nursery).

We have a great group of Canadians here, I am sure that they will

write back with more information.

Judith, Steve, (RSS) and (non RSS) 6 on 2/4/06

[Guest guest]

Hi Beth and welcome to the group. You will absolutely love it here.

The support and love everyone has for each other is amazing. And,

you will build so many lasting friendships that take you off the list

and begin personal emails. There are several of us who do four way

emails! It is so fun.

I have a little boy, , who is 3y, 8m and has a gj tube to get

the nutrition he needs into him. He was diagnosed with RSS at 17

months old at which point he weighed a mere 10 lbs. 10 oz. At that

point, we had to do anything we could for him. He also has a big

brother who adores him and they have the normal brotherly

relationship. But, it took some time for to actually be able

to interact with as he didn't walk until he was 23 months old

and could only get around by scooting on his back or pushing forward

with his legs with his head on the floor. His head was just too

heavy for him to hold up on his own.

But, is doing very well now. If you have read some of my

previous messages, just went through eye surgery without

complication. And, is recovering very well and thankful to be home.

It seems our kids just have an inner will and drive to get them

through these tough times. So, take comfort in knowing that they are

very strong children emotionally and Sydney will do well, you will

see. It is hard, no one will deny that, but it is a hard that is

bearable thanks to the joy that our children bring to us.

I hope to see you on here a lot now and hopefully you and Deb are

close enough to meet someday! She is a great, great person and we

email frequently! Love her! ;o)

Hope to talk to you and see more from you soon,

Jodi R.

>

> 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]

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.

>

>

>

>

>

>

>

[Guest guest]

hi beth!!

i see you have several replies already but wanted to welcome you to

this great big " family " of support and info!! i have a 5 yr old son

with rss who is 30lbs and 39 1/8 " tall. there are several families

here from can. maybe some near you i am not sure but sure they will

respond!! ((HUGS))

jodie c