Re: what would you do?

October 11, 2004

Signe, I think that I would mention it to her, and tell her that since it is

not well known that she might want to mention it to her doctor. I am a

single mom, and Datreon is my only child, when we were trying to figure out what

was going on with him, it would have been great to have some where to start. I

don't think that she would be offended, you could tell her that her child

reminds you of your daughter when she was his age. Good Luck, and I hope this

helps!

le mom to Datreon 26in, 15lb 2oz, RSS

October 12, 2004

Hi signe my name is kim and i'm an rss adult i was just wondering if your 19

year old knows that there is a website for adults and teens with rss where we

chat and exchange experiences and share positive info with each other. We would

love her to join the group and share her experiences of having rss in

adulthood.please email me privately if she wants more info on the site and i can

give you the info for her.

sig_go wrote:

Hello again,

It's been ages since i've posted but I do read my digests as they

come through. In case you're wondering, i'm the mother of a 19 year

old dd who was diagnosed with RSS when she was 7 months old.

I know have a 22 month old and he attends a weekly playgroup through

our school system. There is a little boy in the group who strikes me

as RSS. Now, over the years i've seen many kids who i think may be

RSS but this child really fits the bill.

I've talked to the mom over the past few weeks because it's her

first child and she is concerned about his size. He was full-term

weighing a little over 5 lbs and 17 " long. At 27 months he is 22lbs

and not sure how tall but is in the 5%tile. Mom says he has a very

poor appetite and reacts strongly to high-sugar foods.

Do you think it would be inappropriate of me to bring up the

possibility of RSS with her? If you were in this situation what

would you do? Her doc has not a clue why he is small. Mom is avg

height and dad is quite tall.

Please let me know what you think,

Thanks

Signe

Mom to Ada - 19

Nolan -16

Gaven 12/29/01-03/14/02

Gabe - 22 months

October 12, 2004

hey signe!!

maybe you could give her the address for this list as well as the

phone number and web address to Magic. do you have a blue pamphlet

you could copy to pass along to her. it may be worth her looking

into since she is concerned and so is the ped. also maybe show her

pics of your rss child at that age, maybe she would see the

similarities. good luck!!!

jodie c.

>

> Hello again,

> It's been ages since i've posted but I do read my digests as they

> come through. In case you're wondering, i'm the mother of a 19

year

> old dd who was diagnosed with RSS when she was 7 months old.

>

> I know have a 22 month old and he attends a weekly playgroup

through

> our school system. There is a little boy in the group who strikes

me

> as RSS. Now, over the years i've seen many kids who i think may be

> RSS but this child really fits the bill.

>

> I've talked to the mom over the past few weeks because it's her

> first child and she is concerned about his size. He was full-term

> weighing a little over 5 lbs and 17 " long. At 27 months he is

22lbs

> and not sure how tall but is in the 5%tile. Mom says he has a very

> poor appetite and reacts strongly to high-sugar foods.

>

> Do you think it would be inappropriate of me to bring up the

> possibility of RSS with her? If you were in this situation what

> would you do? Her doc has not a clue why he is small. Mom is avg

> height and dad is quite tall.

>

> Please let me know what you think,

> Thanks

> Signe

> Mom to Ada - 19

> Nolan -16

> Gaven 12/29/01-03/14/02

> Gabe - 22 months

October 12, 2004

Hi Signe,

I would mention the RSS, and point out what characteristics you see that

might lead in that direction. I know that it's easier to get Drs to listen,

if you have something in mind, instead of going in blind. I would also

supply her with MAGIC info, and if you have a blue MAGIC pamphlet on RSS,

give her one.

Pat (g-ma to , RSS, 33 months, 22.5#, 31.8 " , G-Tube)

October 12, 2004

- Hello, wow this is neat I was in the same situation when my son

was in Pre-school last year, their was a boy in 's class and

looks so much RSS we discussed it with the teacher and then I

finally asked his mother , we went on a field trip one day and I was

amazed at how much he favored RSS I am glad we talked, I told her to

go to an endo and definitly tell his DR. I don't know if she did or

not but I hope so, I took pictures of him, he has the Broad forhead

the crooked teeth, ears and pinky!It took me awhile to say something

but I keep thinking of this group and all the support and help she

can get and if he was hypoglycemic or not eating well I wanted her

to know! I told her about the RSS kids site and she looked it up and

couldn't believe that he looked so much like some of the other kids!

Well If I was you just start talking to her asking questions that

might bring out some charecteistics Good luck and let us know!

Chrisitne

--

In RSS-Support , " sig_go " <signenew@m...> wrote:

>

> Hello again,

> It's been ages since i've posted but I do read my digests as they

> come through. In case you're wondering, i'm the mother of a 19

year

> old dd who was diagnosed with RSS when she was 7 months old.

>

> I know have a 22 month old and he attends a weekly playgroup

through

> our school system. There is a little boy in the group who strikes

me

> as RSS. Now, over the years i've seen many kids who i think may be

> RSS but this child really fits the bill.

>

> I've talked to the mom over the past few weeks because it's her

> first child and she is concerned about his size. He was full-term

> weighing a little over 5 lbs and 17 " long. At 27 months he is

22lbs

> and not sure how tall but is in the 5%tile. Mom says he has a very

> poor appetite and reacts strongly to high-sugar foods.

>

> Do you think it would be inappropriate of me to bring up the

> possibility of RSS with her? If you were in this situation what

> would you do? Her doc has not a clue why he is small. Mom is avg

> height and dad is quite tall.

>

> Please let me know what you think,

> Thanks

> Signe

> Mom to Ada - 19

> Nolan -16

> Gaven 12/29/01-03/14/02

> Gabe - 22 months

October 12, 2004

thanks everyone for your great advice and encouragement. I'll see

mom again on Monday. Before then i'm going to dig up pictures of the

many RSS kids i've met and show them to her. She was very interested

in hearing about the syndrome and my daughter so i'm fairly

confident that she won't be upset with the info.

Plus, as you say, she can receive so much support here, if in fact

she does need it. She did mention that her son is hypoglycemic so I

know she has an awareness of how he may differ from other kids his

age. He is such a cute kid - as are all the RSS kids.

I will let you know what happens next but again thanks for your

feedback!

Signe

p.s I found myself looking at his pinkies and trying to determine

whether or not they were crooked. They really weren't but neither

are my daughters. It's funny how we all become 'geneticists' after

we deal with them so much.

October 12, 2004

Hi Kim and thanks for the post. I'm aware of the group for adult RSS

folks but my daughter is not really into that type of thing. She was

diagnosed as being high-functioning autistic years back and she has

very little interest in social activities. I wish she did. In a

strange way, this has been a blessing because she is not the least

bit self-conscience of her small size.

How are you doing, by the way? What are you involved in in your

life. Have you found it challenging to have the RSS? I met a woman

named Cindy several years ago - she must be in her 30's now and she

was really great. I'm sure you are too!

Signe

> Hi signe my name is kim and i'm an rss adult i was just wondering

if your 19 year old knows that there is a website for adults and

teens with rss where we chat and exchange experiences and share

positive info with each other. We would love her to join the group

and share her experiences of having rss in adulthood.please email me

privately if she wants more info on the site and i can give you the

info for her.

>

of this message have been removed]

September 7, 2005

-

Depending on how good/well your insurance covers his care, I would

go to shriner's(upon acceptance) at least for a second opinion-

especially since 2 doctors are on the " official list " -just to

reassure you that your son's feet are totally corrected. The best

part of shriners is that all care/coverage is free of charge until

they are 18.

Hope this helps!

Kathleen

mom to david bcf 8/28/04 fab 12/7

> Hi everyone!

> My son has LCF and his right foot was a little turned in as well.

I

> originally wanted to go to the local Shriners because there are 2

> Ponsetti certified doctors there. I called and did the application

> and they said they would review August 23 (I was due August 25).

> Well, that would have been fine but I had placenta previa and the

> doctors wanted to schedule a c-section earlier just in case. I

called

> back Shriners and they said they would not review the application

> earlier because of the due date. The perinatologist I was seeing

for

> the placenta previa recommended a pediatric orthopedic that the

> hospital refers everyone to. My husband and I set up a

consulatation

> and interviewed him, he seemed like he really knew his stuff just

not

> Ponseti " certified " . Well, little Vinnie came 3 weeks early and we

> had him casted the next day...we are on our last cast and no

tenotomy

> needed. We should be getting the DBB next week. So...here's where

I

> need your advice...I get back from the orthopedic today and

Shriners

> has called. I returned the call but now we are playing phone tag.

Do

> I stay with the doctor we have now or should we go the Shriners

> route? I have no doubts the doctor we have now is a good

doctor...I

> just want to make sure I am doing what's best for my son.

So...what

> would you do?

> -kelly )

September 7, 2005

I think it wouldn't hurt going to both doctors. I know when we took

Collin to Philadelphia Shriners (they don't do the ponseti method)

that they were content with us also going to another doctor/hospital

also, etc at the same time. Eventually we left the other doctor and

stayed with them a bit, but they were very nice about it and

understood we wanted to be sure what we were doing. They were great

at Shriners except our didn't use the ponseti method. I'm hoping

someday they will.

Michele

September 7, 2005

,

Who is the doctor you are going to and who are the doctors at

Shriners? If anyone here knows any of these doctors they can perhaps

give you a recommendation of one over the other.

> Hi everyone!

> My son has LCF and his right foot was a little turned in as well. I

> originally wanted to go to the local Shriners because there are 2

> Ponsetti certified doctors there. I called and did the application

> and they said they would review August 23 (I was due August 25).

> Well, that would have been fine but I had placenta previa and the

> doctors wanted to schedule a c-section earlier just in case. I called

> back Shriners and they said they would not review the application

> earlier because of the due date. The perinatologist I was seeing for

> the placenta previa recommended a pediatric orthopedic that the

> hospital refers everyone to. My husband and I set up a consulatation

> and interviewed him, he seemed like he really knew his stuff just not

> Ponseti " certified " . Well, little Vinnie came 3 weeks early and we

> had him casted the next day...we are on our last cast and no tenotomy

> needed. We should be getting the DBB next week. So...here's where I

> need your advice...I get back from the orthopedic today and Shriners

> has called. I returned the call but now we are playing phone tag. Do

> I stay with the doctor we have now or should we go the Shriners

> route? I have no doubts the doctor we have now is a good doctor...I

> just want to make sure I am doing what's best for my son. So...what

> would you do?

> -kelly )

September 10, 2005

That's a tough call but if your current doctor is " not " certified and the

Shriners doctors " are " certified, I don' think a 2nd opinion could hurt, sort of

cover all your bases.

BTW, is it just me or is there getting to be more and more so-called Ponseti

Doctors who are not certified?

s.

what would you do?

Hi everyone!

My son has LCF and his right foot was a little turned in as well. I

originally wanted to go to the local Shriners because there are 2

Ponsetti certified doctors there. I called and did the application

and they said they would review August 23 (I was due August 25).

Well, that would have been fine but I had placenta previa and the

doctors wanted to schedule a c-section earlier just in case. I called

back Shriners and they said they would not review the application

earlier because of the due date. The perinatologist I was seeing for

the placenta previa recommended a pediatric orthopedic that the

hospital refers everyone to. My husband and I set up a consulatation

and interviewed him, he seemed like he really knew his stuff just not

Ponseti " certified " . Well, little Vinnie came 3 weeks early and we

had him casted the next day...we are on our last cast and no tenotomy

needed. We should be getting the DBB next week. So...here's where I

need your advice...I get back from the orthopedic today and Shriners

has called. I returned the call but now we are playing phone tag. Do

I stay with the doctor we have now or should we go the Shriners

route? I have no doubts the doctor we have now is a good doctor...I

just want to make sure I am doing what's best for my son. So...what

would you do?

-kelly )

September 10, 2005