Re: Is it time for a brace?

[Guest guest]

F.Y.I.,

The time it takes for the curve to grow into the corrected position is about equal to the time from curve detection, to its its first proper corrective treatment by POP jackets/casts.

If the series of jackets/casts are removed and a brace is used prematurely, the childs spine will revert back to its uncorrected state. Its very important to continue with the series of casts until the spine is straight. Then the correction attained must be maintained in a jacket/cast for more than just a couple months. This will be up to the doc, of course...But these jackets/casts are essentially training the young spine to continue growing in the corrected state.

Hope this helps!

HRH

Re: Great News!!!

Great news for Logan and you!!!!! I am happy to hear it. Does he have to wear a brace now?

Gloria

's mom

[Guest guest]

Hey Everyone

I have a question about the brace. Mason is now in his second cast for the kyphosis in his lumbar. He will be getting it removed on July 7th and then he will get a brace that he was fitted for back in May. Our Ortho says that the brace is only going to hold the correction and not improve it any further. How long should I expect him to need the brace? Is this going to be a permanent thing for the rest of his life? Or will eventually his spine will stay in one position without needing the brace or further casting?

THank You

Jen and Mason - hypoplastic left heart syndrome, scoliosis and currently in a spica for kyphosisheather hyatt <heather@...> wrote:

F.Y.I.,

The time it takes for the curve to grow into the corrected position is about equal to the time from curve detection, to its its first proper corrective treatment by POP jackets/casts.

If the series of jackets/casts are removed and a brace is used prematurely, the childs spine will revert back to its uncorrected state. Its very important to continue with the series of casts until the spine is straight. Then the correction attained must be maintained in a jacket/cast for more than just a couple months. This will be up to the doc, of course...But these jackets/casts are essentially training the young spine to continue growing in the corrected state.

Hope this helps!

HRH

Re: Great News!!!

Great news for Logan and you!!!!! I am happy to hear it. Does he have to wear a brace now?

Gloria

's mom

Discover Find restaurants, movies, travel more fun for the weekend. Check it out!

[Guest guest]

:

In our case we are not getting very good correction - from 60 to

40. Dr. does not seem to think that we will get total

correction. Since he has told us this, we have been considering

going back to a brace for short periods of time (if can

tolerate it). With all of your research to do your think this is

wise or not?

Thanks for your advise.

Mayes

> F.Y.I.,

>

> The time it takes for the curve to grow into the corrected

position is about equal to the time from curve detection, to its its

first proper corrective treatment by POP jackets/casts.

>

> If the series of jackets/casts are removed and a brace is used

prematurely, the childs spine will revert back to its uncorrected

state. Its very important to continue with the series of casts

until the spine is straight. Then the correction attained must be

maintained in a jacket/cast for more than just a couple months.

This will be up to the doc, of course...But these jackets/casts are

essentially training the young spine to continue growing in the

corrected state.

>

> Hope this helps!

>

> HRH

>

>

> Re: Great News!!!

>

>

> Great news for Logan and you!!!!! I am happy to hear it. Does he

have to wear a brace now?

> Gloria

> 's mom

>

>

> -------------------------------------------------------------------

-----------

>

[Guest guest]

,

Thats a very tough call.....

I do know that Miss Mehta put strong emphasis on teaching the docs attending

the ETTP how to address and try and correct rotation in the series of casts.

Before they were only concentrating on correcting Cobb, RVAD..Trying to

correct the childs rotation is a huge factor in attaining optimum correction

with POP jackets/casts. Maybe, Dr. will focus on s rotation

in the next cast, open it up a little, and be able to achieve more

correction in the future.

Does this make sense?

I would like to give you a ring later, if thats okay..

Sincerely,

HRH

Re: Great News!!!

>>

>>

>> Great news for Logan and you!!!!! I am happy to hear it. Does he

> have to wear a brace now?

>> Gloria

>> 's mom

>>

>>

>> -------------------------------------------------------------------

> -----------

>>

[Guest guest]

Jen,

I would get an x-ray of Mason out of the cast, to see where his curves really are. Then go from there...

Was Mason officially diagnosed as infantile (non-structural) or congenital (structural) scoliosis?

If he is infantile, I would recommend having the doc cast him til he is straight, then maintain him in this correct position for a few months with a cast until a well-made brace can be worn for approx. 6 months..(watching his curves very closely during this time)

If he is congenital, he may have to wear a brace until he has growth on his side, before a definitive procedure (titanium rib,fusion/rods). It all depends on his spine, of course. Its the boss.

Sincerely,

HRH

Re: Great News!!!

Great news for Logan and you!!!!! I am happy to hear it. Does he have to wear a brace now?

Gloria

's mom

Discover Find restaurants, movies, travel & more fun for the weekend. Check it out!

[Guest guest]

Thank You !

Our ortho says that his his scoliosis and kyphosis is congenital. But as of right now, as far as his spine, we are not worrying about the scoli. He is in the cast for the kyphosis and they believe that as long as he in it then the scoli will not have a chance to progress.

I am so frustrated with this whole process. I know in the long run it will be well worth it, but I dont know if there will be a long run. Mason will be having his 3rd open heart surgery in Sept., and we have no idea what the outcome will be.

I really miss my old baby. How do you all do it? I just want him to be able to sit and play, he cant even sit. Or walk without dragging one leg.

One thing I am worrying about is that after his surgery his curves will have a chance to progress again, he wont be able to wear a brace or anything for 6 weeks or more.

Thank you for the advice

Jen and Masonheather hyatt <heather@...> wrote:

Jen,

I would get an x-ray of Mason out of the cast, to see where his curves really are. Then go from there...

Was Mason officially diagnosed as infantile (non-structural) or congenital (structural) scoliosis?

If he is infantile, I would recommend having the doc cast him til he is straight, then maintain him in this correct position for a few months with a cast until a well-made brace can be worn for approx. 6 months..(watching his curves very closely during this time)

If he is congenital, he may have to wear a brace until he has growth on his side, before a definitive procedure (titanium rib,fusion/rods). It all depends on his spine, of course. Its the boss.

Sincerely,

HRH

Re: Great News!!!

Great news for Logan and you!!!!! I am happy to hear it. Does he have to wear a brace now?

Gloria

's mom

Discover Find restaurants, movies, travel & more fun for the weekend. Check it out!

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[Guest guest]

Jen,

I posted wrong info.

First, I should never put the titanium rib in the same category as fusion/growth rods...Sorry, about that.

The veptr (tit rib) procedure is not a definitive procedure and many children have this option, when they are very little. They dont need growth on their side for this procedure. Once again, every child is very unique and its truly up to the docs evaluating the child and the parents.

Carmell, Gail, and others can surely explain this better than me.

Just wanted to correct my mistake.

Sincerely,

HRH

Re: Great News!!!

Great news for Logan and you!!!!! I am happy to hear it. Does he have to wear a brace now?

Gloria

's mom

Discover Find restaurants, movies, travel & more fun for the weekend. Check it out!

[Guest guest]

Hey Jen,

I just wanted to encourage you to keep hangin in there. You are in a very frustrating time now. When Mo was in her halo at home for 9 months I got very down at times. I railed against how confined she was and how it changed all our lives and kept us all from doing things, especially Moriah. It was neccessary though, and helped her qualify for the VEPTR. Now we have our freedom back and we appreciate it that much more. Just take everything one thing at a time and hold on with all you have. In a while you will look back on it and be glad you are on the other side of things. I would love to talk at anytime. Let me know if you'd like my number.

Shelliejennifer levie <jenniferlevie@...> wrote:

Thank You !

Our ortho says that his his scoliosis and kyphosis is congenital. But as of right now, as far as his spine, we are not worrying about the scoli. He is in the cast for the kyphosis and they believe that as long as he in it then the scoli will not have a chance to progress.

I am so frustrated with this whole process. I know in the long run it will be well worth it, but I dont know if there will be a long run. Mason will be having his 3rd open heart surgery in Sept., and we have no idea what the outcome will be.

I really miss my old baby. How do you all do it? I just want him to be able to sit and play, he cant even sit. Or walk without dragging one leg.

One thing I am worrying about is that after his surgery his curves will have a chance to progress again, he wont be able to wear a brace or anything for 6 weeks or more.

Thank you for the advice

Jen and Masonheather hyatt <heather@...> wrote:

Jen,

I would get an x-ray of Mason out of the cast, to see where his curves really are. Then go from there...

Was Mason officially diagnosed as infantile (non-structural) or congenital (structural) scoliosis?

If he is infantile, I would recommend having the doc cast him til he is straight, then maintain him in this correct position for a few months with a cast until a well-made brace can be worn for approx. 6 months..(watching his curves very closely during this time)

If he is congenital, he may have to wear a brace until he has growth on his side, before a definitive procedure (titanium rib,fusion/rods). It all depends on his spine, of course. Its the boss.

Sincerely,

HRH

Re: Great News!!!

Great news for Logan and you!!!!! I am happy to hear it. Does he have to wear a brace now?

Gloria

's mom

Discover Find restaurants, movies, travel & more fun for the weekend. Check it out!

Discover Have fun online with music videos, cool games, IM & more. Check it out! __________________________________________________

[Guest guest]

Oh thank You so much Shellie.

It really makes me feel so much better when I know there are other people that can relate to what we are going thru.

I just sent you an IM on ...hope you are on there

Take Care

Jen and Mason

Shellie Grant <shelliegrant@...> wrote:

Hey Jen,

I just wanted to encourage you to keep hangin in there. You are in a very frustrating time now. When Mo was in her halo at home for 9 months I got very down at times. I railed against how confined she was and how it changed all our lives and kept us all from doing things, especially Moriah. It was neccessary though, and helped her qualify for the VEPTR. Now we have our freedom back and we appreciate it that much more. Just take everything one thing at a time and hold on with all you have. In a while you will look back on it and be glad you are on the other side of things. I would love to talk at anytime. Let me know if you'd like my number.

Shelliejennifer levie <jenniferlevie@...> wrote:

Thank You !

Our ortho says that his his scoliosis and kyphosis is congenital. But as of right now, as far as his spine, we are not worrying about the scoli. He is in the cast for the kyphosis and they believe that as long as he in it then the scoli will not have a chance to progress.

I am so frustrated with this whole process. I know in the long run it will be well worth it, but I dont know if there will be a long run. Mason will be having his 3rd open heart surgery in Sept., and we have no idea what the outcome will be.

I really miss my old baby. How do you all do it? I just want him to be able to sit and play, he cant even sit. Or walk without dragging one leg.

One thing I am worrying about is that after his surgery his curves will have a chance to progress again, he wont be able to wear a brace or anything for 6 weeks or more.

Thank you for the advice

Jen and Masonheather hyatt <heather@...> wrote:

Jen,

I would get an x-ray of Mason out of the cast, to see where his curves really are. Then go from there...

Was Mason officially diagnosed as infantile (non-structural) or congenital (structural) scoliosis?

If he is infantile, I would recommend having the doc cast him til he is straight, then maintain him in this correct position for a few months with a cast until a well-made brace can be worn for approx. 6 months..(watching his curves very closely during this time)

If he is congenital, he may have to wear a brace until he has growth on his side, before a definitive procedure (titanium rib,fusion/rods). It all depends on his spine, of course. Its the boss.

Sincerely,

HRH

Re: Great News!!!

Great news for Logan and you!!!!! I am happy to hear it. Does he have to wear a brace now?

Gloria

's mom

Discover Find restaurants, movies, travel & more fun for the weekend. Check it out!

Discover Have fun online with music videos, cool games, IM & more. Check it out!

__________________________________________________

[Guest guest]

Hey ,

When it comes to the computer, I'm still in grade school!!! What is IM?

Shelliejennifer levie <jenniferlevie@...> wrote:

Oh thank You so much Shellie.

It really makes me feel so much better when I know there are other people that can relate to what we are going thru.

I just sent you an IM on ...hope you are on there

Take Care

Jen and Mason

Shellie Grant <shelliegrant@...> wrote:

Hey Jen,

I just wanted to encourage you to keep hangin in there. You are in a very frustrating time now. When Mo was in her halo at home for 9 months I got very down at times. I railed against how confined she was and how it changed all our lives and kept us all from doing things, especially Moriah. It was neccessary though, and helped her qualify for the VEPTR. Now we have our freedom back and we appreciate it that much more. Just take everything one thing at a time and hold on with all you have. In a while you will look back on it and be glad you are on the other side of things. I would love to talk at anytime. Let me know if you'd like my number.

Shelliejennifer levie <jenniferlevie@...> wrote:

Thank You !

Our ortho says that his his scoliosis and kyphosis is congenital. But as of right now, as far as his spine, we are not worrying about the scoli. He is in the cast for the kyphosis and they believe that as long as he in it then the scoli will not have a chance to progress.

I am so frustrated with this whole process. I know in the long run it will be well worth it, but I dont know if there will be a long run. Mason will be having his 3rd open heart surgery in Sept., and we have no idea what the outcome will be.

I really miss my old baby. How do you all do it? I just want him to be able to sit and play, he cant even sit. Or walk without dragging one leg.

One thing I am worrying about is that after his surgery his curves will have a chance to progress again, he wont be able to wear a brace or anything for 6 weeks or more.

Thank you for the advice

Jen and Masonheather hyatt <heather@...> wrote:

Jen,

I would get an x-ray of Mason out of the cast, to see where his curves really are. Then go from there...

Was Mason officially diagnosed as infantile (non-structural) or congenital (structural) scoliosis?

If he is infantile, I would recommend having the doc cast him til he is straight, then maintain him in this correct position for a few months with a cast until a well-made brace can be worn for approx. 6 months..(watching his curves very closely during this time)

If he is congenital, he may have to wear a brace until he has growth on his side, before a definitive procedure (titanium rib,fusion/rods). It all depends on his spine, of course. Its the boss.

Sincerely,

HRH

Re: Great News!!!

Great news for Logan and you!!!!! I am happy to hear it. Does he have to wear a brace now?

Gloria

's mom

Discover Find restaurants, movies, travel & more fun for the weekend. Check it out!

Discover Have fun online with music videos, cool games, IM & more. Check it out!

__________________________________________________