t - you may find this interesting...

[Guest guest]

Dr. Morcuende recently finished a study about FAB wear duration and

it's relation to relapse. I too have a child with mild CF and no

tenotomy. He did not recommend that we discontinue FAB wear before

4, if not using it through 5 if she tolerated it. I am not saying

Max's treatment is wrong at all, just thought you may want this

information in your back pocket should you need it in the future.

Here is what Dr. Morcuende wrote to me in Jan. this year. They

presented this paper in Chicago at AAOS in March IIRC. I may even be

able to find the publication online now that it has been officially

presented but I'm not 100% sure.

Kori

" With regards to the brace, I just finished a study evaluating all

patients in the last 50 years (we are actually writing the paper

now). Relapses can be seen up to the age of 10 years of age, although

they are very rare this late. the numbers you should remember are:

95% chance of relapse chance in 1st year of life (if no brace);

70-80% in 2nd year; 30-40% in 3th year, 10-15% at 4th year, and 5%

afterwards until 10 or so. Unfortunately, there are no signs that

will help us to know who is going to relapse or not. So, we recommend

to use the brace 10-12 h/day as long as possible, even getting to the

5th year (if the kid tolerates it).

Thank you again for your input. it is very helpful. Please, keep me

posted with her progress.

best

jose morcuende "

[Guest guest]

Just my 2 cents here but I really agree with Kori here! Our daughter

also didn't need the tenotomy and was corrected with only 4 casts but

I will be keeping her in her brace unitl she is at least 4. As Dr.

Morcuende said, they cannot tell which kids will relapse and which

won't at this point and severity has nothing to do with it it seems

so I figure, why take the chance?! I like the odds after 4 or 5 yrs

of age much much better than after 2 or 3 yrs!

& Grace 22mos

urcf FAB 13hrs

>

> Dr. Morcuende recently finished a study about FAB wear duration and

> it's relation to relapse. I too have a child with mild CF and no

> tenotomy. He did not recommend that we discontinue FAB wear before

> 4, if not using it through 5 if she tolerated it. I am not saying

> Max's treatment is wrong at all, just thought you may want this

> information in your back pocket should you need it in the future.

>

> Here is what Dr. Morcuende wrote to me in Jan. this year. They

> presented this paper in Chicago at AAOS in March IIRC. I may even

be

> able to find the publication online now that it has been officially

> presented but I'm not 100% sure.

>

>

> Kori

>

>

>

> " With regards to the brace, I just finished a study evaluating all

> patients in the last 50 years (we are actually writing the paper

> now). Relapses can be seen up to the age of 10 years of age,

although

> they are very rare this late. the numbers you should remember are:

> 95% chance of relapse chance in 1st year of life (if no brace);

> 70-80% in 2nd year; 30-40% in 3th year, 10-15% at 4th year, and 5%

> afterwards until 10 or so. Unfortunately, there are no signs that

> will help us to know who is going to relapse or not. So, we

recommend

> to use the brace 10-12 h/day as long as possible, even getting to

the

> 5th year (if the kid tolerates it).

>

> Thank you again for your input. it is very helpful. Please, keep me

> posted with her progress.

>

> best

> jose morcuende "

>

>

>

>

>