Re: Update on Devyn's 3rd brace

[Guest guest]

Rochelle, Thanks for sharing that... It's good to know about all the possible scenarios that can arise with treatment. Steph Rochelle West /Devyn West wrote: Hello everyone,One month ago Devyn was at 0 degrees in his second brace. They wanted to make one more brace to hold him at 0 degrees and make sure it stayed there. Two days after Devyn's Ortho appointment we saw the brace guy and Devyn had been molded for the third brace. The origianl guy that molded

devyn was going on vacation and said the other guy in the office was going to finish Devyn's brace and we should recieve a call in a couple days. Well there was some kind of miss communication with the new brace. First it was not supposed to have a push in it because the push actually made his spine curve the opposite direction which meant that he was truely at 0 degrees but it had the push in it any ways. Second it took them a month to make the new brace. The new brace just didn't sit well with us, the way it fit him and the fact that it had a push in it. When he had it on as tight as it would go I could literally stick my entire hand up the side of the brace. It just did not conform to his body the way it should have. We immediatly made an appointment with his ortho. Devyn did not wear his brace at all until we saw his Ortho. His Ortho was upset that the brace was not made correctly and that it took so long for us to

get it. He xrayed Devyn last Thursday and he has progressed back to 9 degrees. We are going three weeks without a brace to see if he continues to progress. I wanted to tell everyone our personal experience so that it may help others in the future. Again this is just our personal experience and I believe that the more educated we as parents are with ET the better we can advocate for our children so they can get the care they deserve. This was just a unfortunate miss communication that has clearly opened my eyes on how important and crucial time is. I hope I haven't offended anyone I just wanted to share this experience.Rochelle mom to Devyn 2 and 1/2yrs Infantile Scoliosis, Chiari 1

[Guest guest]

Rochelle, Thanks for sharing that... It's good to know about all the possible scenarios that can arise with treatment. Steph Rochelle West /Devyn West wrote: Hello everyone,One month ago Devyn was at 0 degrees in his second brace. They wanted to make one more brace to hold him at 0 degrees and make sure it stayed there. Two days after Devyn's Ortho appointment we saw the brace guy and Devyn had been molded for the third brace. The origianl guy that molded

devyn was going on vacation and said the other guy in the office was going to finish Devyn's brace and we should recieve a call in a couple days. Well there was some kind of miss communication with the new brace. First it was not supposed to have a push in it because the push actually made his spine curve the opposite direction which meant that he was truely at 0 degrees but it had the push in it any ways. Second it took them a month to make the new brace. The new brace just didn't sit well with us, the way it fit him and the fact that it had a push in it. When he had it on as tight as it would go I could literally stick my entire hand up the side of the brace. It just did not conform to his body the way it should have. We immediatly made an appointment with his ortho. Devyn did not wear his brace at all until we saw his Ortho. His Ortho was upset that the brace was not made correctly and that it took so long for us to

get it. He xrayed Devyn last Thursday and he has progressed back to 9 degrees. We are going three weeks without a brace to see if he continues to progress. I wanted to tell everyone our personal experience so that it may help others in the future. Again this is just our personal experience and I believe that the more educated we as parents are with ET the better we can advocate for our children so they can get the care they deserve. This was just a unfortunate miss communication that has clearly opened my eyes on how important and crucial time is. I hope I haven't offended anyone I just wanted to share this experience.Rochelle mom to Devyn 2 and 1/2yrs Infantile Scoliosis, Chiari 1

[Guest guest]

Rochelle,First I am sorry to hear Devyn has progressed. I pray this is it.....no more than 9.Second I am not sure how your experience could offend anyone. I am thankful you have shared this with us. We all need to know the possibility of this happening. Every child is different, but it prepares us all for what could happen.I know for me I am eagerly waiting for 's next xray in 3 weeks because he looks so straight. I am already hoping he is done with his brace, BUT I sure don't want to go without too soon.Which leaves me to a question I have been wondering about........isn't there a time we do need to see what our child's spine will do without any support? 's doctor has mentioned a night brace if he has continue to get better, but what do most docs do? Go totally without? What does Mehta say?So how long has Devyn been in a brace? Didn't he have just a few casts?Please keep us posted.

And again thank you for letting us know about this experience. Awareness is key for me.......I continue to gain knowledge here daily.Take care,TashaMommy of twin boys- and 3 years oldFort Worth, Texas is currently in a brace-8 degrees out of brace!!Rochelle West /Devyn West wrote: Hello everyone, One month ago Devyn was at 0 degrees in his second brace. They wanted to make one more brace to hold him at 0 degrees and make sure it stayed there. Two days after

Devyn's Ortho appointment we saw the brace guy and Devyn had been molded for the third brace. The origianl guy that molded devyn was going on vacation and said the other guy in the office was going to finish Devyn's brace and we should recieve a call in a couple days. Well there was some kind of miss communication with the new brace. First it was not supposed to have a push in it because the push actually made his spine curve the opposite direction which meant that he was truely at 0 degrees but it had the push in it any ways. Second it took them a month to make the new brace. The new brace just didn't sit well with us, the way it fit him and the fact that it had a push in it. When he had it on as tight as it would go I could literally stick my entire hand up the side of the brace. It just did not conform to his body the way it should have. We immediatly made an appointment with his ortho. Devyn did not wear

his brace at all until we saw his Ortho. His Ortho was upset that the brace was not made correctly and that it took so long for us to get it. He xrayed Devyn last Thursday and he has progressed back to 9 degrees. We are going three weeks without a brace to see if he continues to progress. I wanted to tell everyone our personal experience so that it may help others in the future. Again this is just our personal experience and I believe that the more educated we as parents are with ET the better we can advocate for our children so they can get the care they deserve. This was just a unfortunate miss communication that has clearly opened my eyes on how important and crucial time is. I hope I haven't offended anyone I just wanted to share this experience. Rochelle mom to Devyn 2 and 1/2yrs Infantile Scoliosis, Chiari 1

[Guest guest]

Tasha

Thanks for your support. Devyn had three casts a total of six

months and has been in a brace since Halloween 2007. I think it is

good to go without a brace at a point to see what will happen. We

were just not prepared for that yet. I wanted at least three months

with a new brace holding him at zero. That is why right now his Ortho

thinks it is good to see what will happen without a brace so we know

if his spine is to flexible and will just progress back to where we

started that is why he said lets only wait three weeks. I think Mehta

says six months in brace after casting but I'm sure will jump

in and clarify. I will let you know what happens July 3rd.

Rochelle

Hello everyone,

> One month ago Devyn was at 0 degrees in his second brace.

They

> wanted to make one more brace to hold him at 0 degrees and make

sure

> it stayed there. Two days after Devyn's Ortho appointment we saw

the

> brace guy and Devyn had been molded for the third brace. The

origianl

> guy that molded devyn was going on vacation and said the other guy

in

> the office was going to finish Devyn's brace and we should recieve

a

> call in a couple days. Well there was some kind of miss

communication

> with the new brace. First it was not supposed to have a push in it

> because the push actually made his spine curve the opposite

direction

> which meant that he was truely at 0 degrees but it had the push in

it

> any ways. Second it took them a month to make the new brace. The

new

> brace just didn't sit well with us, the way it fit him and the

fact

> that it had a push in it. When he had it on as tight as it would

go I

> could literally stick my entire hand up the side of the brace. It

> just did not conform to his body the way it should have. We

> immediatly made an appointment with his ortho. Devyn did not wear

his

> brace at all until we saw his Ortho. His Ortho was upset that the

> brace was not made correctly and that it took so long for us to

get

> it. He xrayed Devyn last Thursday and he has progressed back to 9

> degrees. We are going three weeks without a brace to see if he

> continues to progress. I wanted to tell everyone our personal

> experience so that it may help others in the future. Again this is

> just our personal experience and I believe that the more educated

we

> as parents are with ET the better we can advocate for our children

so

> they can get the care they deserve. This was just a unfortunate

miss

> communication that has clearly opened my eyes on how important and

> crucial time is. I hope I haven't offended anyone I just wanted to

> share this experience.

>

> Rochelle mom to Devyn 2 and 1/2yrs Infantile Scoliosis, Chiari 1

>

[Guest guest]

Tasha

Thanks for your support. Devyn had three casts a total of six

months and has been in a brace since Halloween 2007. I think it is

good to go without a brace at a point to see what will happen. We

were just not prepared for that yet. I wanted at least three months

with a new brace holding him at zero. That is why right now his Ortho

thinks it is good to see what will happen without a brace so we know

if his spine is to flexible and will just progress back to where we

started that is why he said lets only wait three weeks. I think Mehta

says six months in brace after casting but I'm sure will jump

in and clarify. I will let you know what happens July 3rd.

Rochelle

Hello everyone,

> One month ago Devyn was at 0 degrees in his second brace.

They

> wanted to make one more brace to hold him at 0 degrees and make

sure

> it stayed there. Two days after Devyn's Ortho appointment we saw

the

> brace guy and Devyn had been molded for the third brace. The

origianl

> guy that molded devyn was going on vacation and said the other guy

in

> the office was going to finish Devyn's brace and we should recieve

a

> call in a couple days. Well there was some kind of miss

communication

> with the new brace. First it was not supposed to have a push in it

> because the push actually made his spine curve the opposite

direction

> which meant that he was truely at 0 degrees but it had the push in

it

> any ways. Second it took them a month to make the new brace. The

new

> brace just didn't sit well with us, the way it fit him and the

fact

> that it had a push in it. When he had it on as tight as it would

go I

> could literally stick my entire hand up the side of the brace. It

> just did not conform to his body the way it should have. We

> immediatly made an appointment with his ortho. Devyn did not wear

his

> brace at all until we saw his Ortho. His Ortho was upset that the

> brace was not made correctly and that it took so long for us to

get

> it. He xrayed Devyn last Thursday and he has progressed back to 9

> degrees. We are going three weeks without a brace to see if he

> continues to progress. I wanted to tell everyone our personal

> experience so that it may help others in the future. Again this is

> just our personal experience and I believe that the more educated

we

> as parents are with ET the better we can advocate for our children

so

> they can get the care they deserve. This was just a unfortunate

miss

> communication that has clearly opened my eyes on how important and

> crucial time is. I hope I haven't offended anyone I just wanted to

> share this experience.

>

> Rochelle mom to Devyn 2 and 1/2yrs Infantile Scoliosis, Chiari 1

>

[Guest guest]

You guys will definitely be on my mind. Sending prayers your way.TashaRochelle West /Devyn West wrote: Tasha Thanks for your support. Devyn had three casts a total of six months and has been in a brace since Halloween 2007. I think it is good to go without a brace at a point to see what will happen. We were just not prepared for that yet. I wanted at least three months with a new brace holding him at zero. That is why right now his Ortho thinks it is good to see what will happen without a

brace so we know if his spine is to flexible and will just progress back to where we started that is why he said lets only wait three weeks. I think Mehta says six months in brace after casting but I'm sure will jump in and clarify. I will let you know what happens July 3rd. Rochelle Hello everyone, > One month ago Devyn was at 0 degrees in his second brace. They > wanted to make one more brace to hold him at 0 degrees and make sure > it stayed there. Two days after Devyn's Ortho appointment we saw the > brace guy and Devyn had been molded for the third brace. The origianl > guy that molded devyn was going on vacation and said the other guy in > the office was going to finish Devyn's brace and we should recieve a > call in a couple days. Well there was some kind of miss communication > with the new brace. First it was not supposed to have a push in it > because the push actually made his spine curve the opposite direction > which meant that he was truely at 0 degrees but it had the push in it > any ways. Second it took them a month to make the new brace. The new

> brace just didn't sit well with us, the way it fit him and the fact > that it had a push in it. When he had it on as tight as it would go I > could literally stick my entire hand up the side of the brace. It > just did not conform to his body the way it should have. We > immediatly made an appointment with his ortho. Devyn did not wear his > brace at all until we saw his Ortho. His Ortho was upset that the > brace was not made correctly and that it took so long for us to get > it. He xrayed Devyn last Thursday and he has progressed back to 9 > degrees. We are going three weeks without a brace to see if he > continues to progress. I wanted to tell everyone our personal > experience so that it may help others in the future. Again this is > just our personal experience and I believe that the more educated we > as parents are with ET the

better we can advocate for our children so > they can get the care they deserve. This was just a unfortunate miss > communication that has clearly opened my eyes on how important and > crucial time is. I hope I haven't offended anyone I just wanted to > share this experience. > > Rochelle mom to Devyn 2 and 1/2yrs Infantile Scoliosis, Chiari 1 >

[Guest guest]

You guys will definitely be on my mind. Sending prayers your way.TashaRochelle West /Devyn West wrote: Tasha Thanks for your support. Devyn had three casts a total of six months and has been in a brace since Halloween 2007. I think it is good to go without a brace at a point to see what will happen. We were just not prepared for that yet. I wanted at least three months with a new brace holding him at zero. That is why right now his Ortho thinks it is good to see what will happen without a

brace so we know if his spine is to flexible and will just progress back to where we started that is why he said lets only wait three weeks. I think Mehta says six months in brace after casting but I'm sure will jump in and clarify. I will let you know what happens July 3rd. Rochelle Hello everyone, > One month ago Devyn was at 0 degrees in his second brace. They > wanted to make one more brace to hold him at 0 degrees and make sure > it stayed there. Two days after Devyn's Ortho appointment we saw the > brace guy and Devyn had been molded for the third brace. The origianl > guy that molded devyn was going on vacation and said the other guy in > the office was going to finish Devyn's brace and we should recieve a > call in a couple days. Well there was some kind of miss communication > with the new brace. First it was not supposed to have a push in it > because the push actually made his spine curve the opposite direction > which meant that he was truely at 0 degrees but it had the push in it > any ways. Second it took them a month to make the new brace. The new

> brace just didn't sit well with us, the way it fit him and the fact > that it had a push in it. When he had it on as tight as it would go I > could literally stick my entire hand up the side of the brace. It > just did not conform to his body the way it should have. We > immediatly made an appointment with his ortho. Devyn did not wear his > brace at all until we saw his Ortho. His Ortho was upset that the > brace was not made correctly and that it took so long for us to get > it. He xrayed Devyn last Thursday and he has progressed back to 9 > degrees. We are going three weeks without a brace to see if he > continues to progress. I wanted to tell everyone our personal > experience so that it may help others in the future. Again this is > just our personal experience and I believe that the more educated we > as parents are with ET the

better we can advocate for our children so > they can get the care they deserve. This was just a unfortunate miss > communication that has clearly opened my eyes on how important and > crucial time is. I hope I haven't offended anyone I just wanted to > share this experience. > > Rochelle mom to Devyn 2 and 1/2yrs Infantile Scoliosis, Chiari 1 >

[Guest guest]

Rochelle,

Let's just hope that Devyn holds at 9. You have still come a long way from the very beginning. BTW - We met Dr. kson w/ Toby's 1st cast June 13. He is awesome!!! You are in good hands.

Belinda, mother of Toby, 3 yrs

Update on Devyn's 3rd brace

Hello everyone,One month ago Devyn was at 0 degrees in his second brace. They wanted to make one more brace to hold him at 0 degrees and make sure it stayed there. Two days after Devyn's Ortho appointment we saw the brace guy and Devyn had been molded for the third brace. The origianl guy that molded devyn was going on vacation and said the other guy in the office was going to finish Devyn's brace and we should recieve a call in a couple days. Well there was some kind of miss communication with the new brace. First it was not supposed to have a push in it because the push actually made his spine curve the opposite direction which meant that he was truely at 0 degrees but it had the push in it any ways. Second it took them a month to make the new brace. The new brace just didn't sit well with us, the way it fit him and the fact that it had a push in it. When he had it on as tight as it would go I could literally stick my entire hand up the side of the brace. It just did not conform to his body the way it should have. We immediatly made an appointment with his ortho. Devyn did not wear his brace at all until we saw his Ortho. His Ortho was upset that the brace was not made correctly and that it took so long for us to get it. He xrayed Devyn last Thursday and he has progressed back to 9 degrees. We are going three weeks without a brace to see if he continues to progress. I wanted to tell everyone our personal experience so that it may help others in the future. Again this is just our personal experience and I believe that the more educated we as parents are with ET the better we can advocate for our children so they can get the care they deserve. This was just a unfortunate miss communication that has clearly opened my eyes on how important and crucial time is. I hope I haven't offended anyone I just wanted to share this experience.Rochelle mom to Devyn 2 and 1/2yrs Infantile Scoliosis, Chiari 1

[Guest guest]

Thanks Belinda

I'm so glad you like Dr kson and I know things will work out

we are just playing the waiting game now.

Rochelle

>

> Rochelle,

>

> Let's just hope that Devyn holds at 9. You have still come a long

way from the very beginning. BTW - We met Dr. kson w/ Toby's 1st

cast June 13. He is awesome!!! You are in good hands.

>

> Belinda, mother of Toby, 3 yrs

> Update on Devyn's 3rd brace

>

>

> Hello everyone,

> One month ago Devyn was at 0 degrees in his second brace. They

> wanted to make one more brace to hold him at 0 degrees and make

sure

> it stayed there. Two days after Devyn's Ortho appointment we saw

the

> brace guy and Devyn had been molded for the third brace. The

origianl

> guy that molded devyn was going on vacation and said the other

guy in

> the office was going to finish Devyn's brace and we should

recieve a

> call in a couple days. Well there was some kind of miss

communication

> with the new brace. First it was not supposed to have a push in

it

> because the push actually made his spine curve the opposite

direction

> which meant that he was truely at 0 degrees but it had the push

in it

> any ways. Second it took them a month to make the new brace. The

new

> brace just didn't sit well with us, the way it fit him and the

fact

> that it had a push in it. When he had it on as tight as it would

go I

> could literally stick my entire hand up the side of the brace. It

> just did not conform to his body the way it should have. We

> immediatly made an appointment with his ortho. Devyn did not wear

his

> brace at all until we saw his Ortho. His Ortho was upset that the

> brace was not made correctly and that it took so long for us to

get

> it. He xrayed Devyn last Thursday and he has progressed back to 9

> degrees. We are going three weeks without a brace to see if he

> continues to progress. I wanted to tell everyone our personal

> experience so that it may help others in the future. Again this

is

> just our personal experience and I believe that the more educated

we

> as parents are with ET the better we can advocate for our

children so

> they can get the care they deserve. This was just a unfortunate

miss

> communication that has clearly opened my eyes on how important

and

> crucial time is. I hope I haven't offended anyone I just wanted

to

> share this experience.

>

> Rochelle mom to Devyn 2 and 1/2yrs Infantile Scoliosis, Chiari 1

>