Upcoming appt at Shriner's and brace issues...

[Guest guest]

Thanks for your suggestions...I did call Shriner's in Philadelphia. I

was told it would be best for the doctor there to see in person,

as opposed to just sending films - due to his other heart and lung

problems. They did not think he would be a candidate for the casting

due to his heart/lungs, but said they would evaulate him and may have

other alternatives. So, we faxed in his application and should be

hearing from them soon with an appointment, they said probably with

Dr Betz.

He really has never liked his brace, which he has worn for the past

3.5 years, but did really well these past four months just wearing it

at night. Well, this past week of wearing it 16-20 hours a day has

been just miserable. Last night he really seemed to be having trouble

breathing, so I took his brace off and it improved some. I took him

to his pulmonologist today, who checked his lung function with and

without the brace, and found that the brace decreased his lung

function by 30%!!So, for now, he is not allowed to wear it - and

we're to see his local ortho in two days.

I would think that if his brace decreases his lung function that a

cast would too?? Anybody here casted with underlying heart defects or

lung problems??

Again, thanks for your suggestions. We look forward to getting

another opinion (even though we really like his doctor here).

,

mom to , 6.5 years old, infantile scoliosis 28 degree thoracic

curve, 3 open heart surgeries and one lung surgery

[Guest guest]

Hi ,

I just wanted to say you'll be in great hands with Dr. Betz. Do you

have an appt. date yet? We've been going to Shriners Philly since

late 2003 and can't say enough good things about the place -

particularly Dr. Betz. I am sure he'll have a plan for your son. He

always does :-)

Please keep us posted.

Good luck,

>

> Thanks for your suggestions...I did call Shriner's in Philadelphia.

I

> was told it would be best for the doctor there to see in

person,

> as opposed to just sending films - due to his other heart and lung

> problems. They did not think he would be a candidate for the

casting

> due to his heart/lungs, but said they would evaulate him and may

have

> other alternatives. So, we faxed in his application and should be

> hearing from them soon with an appointment, they said probably with

> Dr Betz.

>

> He really has never liked his brace, which he has worn for the past

> 3.5 years, but did really well these past four months just wearing

it

> at night. Well, this past week of wearing it 16-20 hours a day has

> been just miserable. Last night he really seemed to be having

trouble

> breathing, so I took his brace off and it improved some. I took him

> to his pulmonologist today, who checked his lung function with and

> without the brace, and found that the brace decreased his lung

> function by 30%!!So, for now, he is not allowed to wear it - and

> we're to see his local ortho in two days.

>

> I would think that if his brace decreases his lung function that a

> cast would too?? Anybody here casted with underlying heart defects

or

> lung problems??

>

> Again, thanks for your suggestions. We look forward to getting

> another opinion (even though we really like his doctor here).

>

> ,

> mom to , 6.5 years old, infantile scoliosis 28 degree thoracic

> curve, 3 open heart surgeries and one lung surgery

>