Re: beginning to wear a TLSO brace

[Guest guest]

Missy, welcome to the group.

I know this has got to be hard for your little guy.

My son was in a series of casts for 15 months prior to his brace so we didn't

have a hard time. Sure he wants it off every now and then, but for the most

part having something on his body is all he knows.

All I can say is he does not have a say in the matter. We know it is what is

best for him so he must learn to deal with it.

Your son will eventually get use to it. Don't give in to him and what ever you

do, do not take it off while he is crying to have it off. I know it is hard for

you too.

I can't imagine going from nothing to the brace at 2 1/2 years old. I know my

son would be doing the same as yours.

I wish I had better advice to give you. Hang in there and with time things will

get better for him.

Take care,

Tasha

Mommy of twin boys- and 33 months

Fort Worth, Texas

missy joy wrote: Hi,

New to the group. I have a 2 1/2 year old son with Marfan Syndrome. As a

result, he also has scoliosis (38 degree curve). We just got home from a trip

to the Mayo Clinic where he was fitted for a TLSO brace. Does anyone have any

suggestions for getting him through the first couple of weeks. We were given a

wearing schedule that wants him to be in it at least 20 hours a day within 3

weeks. He is miserable the entire time he has to wear it now, and he's only in

it for 2 hour stretches of time.

Thanks,

Missy

__________________________________________________________

Never miss a thing. Make Yahoo your home page.

http://www.yahoo.com/r/hs

[Guest guest]

Hi Missy,

Are you in MN? Did you by chance see Dr Shaughnessy at the Mayo?

My son, Noah, is also 2 1/2 and we live in Mpls. We have

researched/visited with local orthos, but ultimately decided to

travel to Salt Lake City for my son's treatment. If you haven't

already - please visit the " files section " in the group and read up

on Early Treatment.

I can't help you too much with the brace issue. My son went right

into a cast. I can, however, somewhat relate. Noah had to wear a

corrective helmet due to plagicephaly. We were also given a wearing

schedule to ease him into it. It was very tough at first (non-stop

crying) but as time went on it got easier and easier.

Let me know if you have any questions.

Hi,

>

> New to the group. I have a 2 1/2 year old son with Marfan

Syndrome. As a result, he also has scoliosis (38 degree curve).

We just got home from a trip to the Mayo Clinic where he was fitted

for a TLSO brace. Does anyone have any suggestions for getting him

through the first couple of weeks. We were given a wearing schedule

that wants him to be in it at least 20 hours a day within 3 weeks.

He is miserable the entire time he has to wear it now, and he's

only in it for 2 hour stretches of time.

>

> Thanks,

>

> Missy

>

> __________________________________________________________

> Never miss a thing. Make Yahoo your home page.

> http://www.yahoo.com/r/hs

>

>

[Guest guest]

Thanks, .

We live in the Upper Peninsula of Michigan. My son, , saw Dr. Stans at

Mayo. Because has Marfan Syndrome, the cardiologist recommended Stans

because of his relationship with the Marfan Clinic at Mayo.

I haven't visited the files section. This is the first group I've ever joined

and know little about the extras associated with it. I'll have to look for

that.

Missy

Re: beginning to wear a TLSO brace

Hi Missy,

Are you in MN? Did you by chance see Dr Shaughnessy at the Mayo?

My son, Noah, is also 2 1/2 and we live in Mpls. We have

researched/visited with local orthos, but ultimately decided to

travel to Salt Lake City for my son's treatment. If you haven't

already - please visit the " files section " in the group and read up

on Early Treatment.

I can't help you too much with the brace issue. My son went right

into a cast. I can, however, somewhat relate. Noah had to wear a

corrective helmet due to plagicephaly. We were also given a wearing

schedule to ease him into it. It was very tough at first (non-stop

crying) but as time went on it got easier and easier.

Let me know if you have any questions.

Hi,

>

> New to the group. I have a 2 1/2 year old son with Marfan

Syndrome. As a result, he also has scoliosis (38 degree curve).

We just got home from a trip to the Mayo Clinic where he was fitted

for a TLSO brace. Does anyone have any suggestions for getting him

through the first couple of weeks. We were given a wearing schedule

that wants him to be in it at least 20 hours a day within 3 weeks.

He is miserable the entire time he has to wear it now, and he's

only in it for 2 hour stretches of time.

>

> Thanks,

>

> Missy

>

> ____________ _________ _________ _________ _________ _________ _

> Never miss a thing. Make Yahoo your home page.

> http://www.yahoo. com/r/hs

>

>

[Guest guest]

Hi Missy

My little girl has Marfan Syndrome too - She got a TLSO at aged 3 yrs.

She didn't have too much trouble adjusting to it - Although we found

that she couldn't eat as much with the brace, so we'd take it off

right before dinner!

She wore it faithfully 23/7 for over a year. By that time her lumbar

curve was in the high 40's*, and we knew that a brace wasn't going to

correct, or even hold her curves for the next 10+ years!!!!!

We then looked at serial casting - We knew we wouldn't get a " cure " -

not with the under-lying Marfan Syndrome, but I felt we needed

something to slow those progressive curves from reaching what I felt

were unmanageable numbers.....

Have you got in brace x-rays to see what kind of correction he's

getting?

He will get used to it - be patient, he'll do fine.

Nice to meet you

Jacki

>

> Hi,

>

> New to the group. I have a 2 1/2 year old son with Marfan

Syndrome. As a result, he also has scoliosis (38 degree curve). We

just got home from a trip to the Mayo Clinic where he was fitted for

a TLSO brace. Does anyone have any suggestions for getting him

through the first couple of weeks. We were given a wearing schedule

that wants him to be in it at least 20 hours a day within 3 weeks. He

is miserable the entire time he has to wear it now, and he's only in

it for 2 hour stretches of time.

>

> Thanks,

>

> Missy

>

>

>

>

>

______________________________________________________________________

______________

> Never miss a thing. Make Yahoo your home page.

> http://www.yahoo.com/r/hs

>

>