Brace Questions

[Guest guest]

Drue got his second brace yesterday. It is much tighter than the last and has padding on the side that needs extra push. He seems very happy and normal today. We are getting ready to take it off for the night, so I'll have to check pressure points. I am like you, the first time, I was terrified if I had on in the right position, more so than how tight. We have marks on the straps as well. I stand Drue up unless he is throwing a fit,, then I lay him on his tummy. I actually pull the knit-rite shirt down far enough that I can flip it up over the bottom of the brace. We are potty training, so he wears a pull up on the outside of the brace. The constant take brace on/off to change diaper was too much for us. This seems much easier.

Hopefully he is just getting used to it. Is there redness after you take the brace off more than about 30 min? Our ortho said all redness should go away.

I am fairly new at this, hope some of this helps. and JimmyMommy and daddy to Grace, 10, Tryston, 5Drue, 1, out of cast #213* out of cast, down from 26*, started at 40*In first braceSt. Louis Shriners Hospital

From: Tasha Fontenot <ryanswalk@...>Subject: Re: Brace Questionsinfantile scoliosis treatment Received: Friday, August 20, 2010, 11:07 AM

Lynn,

First off DON'T EVER feel like you can not come here and rejoice in YOUR GOOD news!!! Congrats!

-I always had to take 's brace off to change his diaper. The brace should not be that difficult for you to get on and off by yourself.

- adjusted very well. I guess it was all he knew. He went straight from the cast to the brace.....literally. The brace should not be hurting him.....maybe he is just getting use to it.

-His orthotist always makes a mark with a Sharpie on the brace straps so I know where it should be.

- had a little weakness, but within days he was fine.

I am SO happy for you. Just another step ahead in this journey.

TashaMommy of 5 year old twin boys- and Fort Worth, Texas is treated at Texas ish Rite Hospital in Dallas, TexasSeries of 6 casts for 14 months followed by bracing since September 2007You can read 's story at.... http://www.infantilescoliosis.org/stories.html

From: Lynn Marsden <lynn_marsden@...>infantile scoliosis treatment Sent: Fri, August 20, 2010 12:15:00 PMSubject: Brace Questions

Hi all

Well, I'm not feeling really sure if now is the appropriate time to announce that Peyton went into his first brace after 8 castings. I know many of you are still struggling with the casting road and I don't want to in any way rub salt in open wounds. I just have a few bracing questions. First of all, it is not going smoothly which I anticipated. The fact that Peyton has low muscle tone does not makes things any easier. Out of brace he is a floppy mess! Im hoping that in time he will build up some trunk muscles. Also it almost looks as if the casting has deformed him. He has a large indentation in the sternum area (not cast related I dont think) that the doctor said can be operated on and corrected so thats good but his chest wall is way too skinny, I literally don't know how his chest can hold his organs in there with enough room to function safely. Has this happened to anyone after casting

is finished. He spent 14 months in casts (no breaks) and now Im wondering if we should have insisted on breaks. Anyway here are my brace questions...

1. How do you diaper with a brace on? The undershirt makes it impossible to diaper and push up under the back of the brace. I can't take the brace off by myself so when my husband is at work I just tuck the diaper up the back as best a possible.

2. Did any of the kids have a really hard time adjusting to the brace? Its almost like everytime I pick him up or move him he whinces like he is hurting.

3. How do you know if the brace is on right or if its too loose or too tight?

4. Did anyone elses child experience extreme weakness after the casting and if so how

long did it take to build back up some muscle in the torso?

Thats all for now however Im sure I will have more questions as time goes on. Thanks so much for any advice

Lynn.

[Guest guest]

Lynn,I don't have any brace advice, but I am so happy for your progress with Peyton into his first brace! Yay!!! Heidi, Bexon's Mommy, (3 years old, in 8th cast from Salt Lake City Shriners, currently down from 62 degrees to 20 in cast)From: Lynn Marsden <lynn_marsden@...>infantile scoliosis treatment Sent: Fri, August 20, 2010 10:15:00 AMSubject: Brace Questions

Hi all

Well, I'm not feeling really sure if now is the appropriate time to announce that Peyton went into his first brace after 8 castings. I know many of you are still struggling with the casting road and I don't want to in any way rub salt in open wounds. I just have a few bracing questions. First of all, it is not going smoothly which I anticipated. The fact that Peyton has low muscle tone does not makes things any easier. Out of brace he is a floppy mess! Im hoping that in time he will build up some trunk muscles. Also it almost looks as if the casting has deformed him. He has a large indentation in the sternum area (not cast related I dont think) that the doctor said can be operated on and corrected so thats good but his chest wall is way too skinny, I literally don't know how his chest can hold his organs in there with enough room to function safely. Has this happened to anyone after casting

is finished. He spent 14 months in casts (no breaks) and now Im wondering if we should have insisted on breaks. Anyway here are my brace questions...

1. How do you diaper with a brace on? The undershirt makes it impossible to diaper and push up under the back of the brace. I can't take the brace off by myself so when my husband is at work I just tuck the diaper up the back as best a possible.

2. Did any of the kids have a really hard time adjusting to the brace? Its almost like everytime I pick him up or move him he whinces like he is hurting.

3. How do you know if the brace is on right or if its too loose or too tight?

4. Did anyone elses child experience extreme weakness after the casting and if so how

long did it take to build back up some muscle in the torso?

Thats all for now however Im sure I will have more questions as time goes on. Thanks so much for any advice

Lynn.

[Guest guest]

In our current brace, Grace has to lay on her back for us to put the brace on, then she rolls onto her side with the straps facing the back and I thread and tighten them. Her prior braces she was suppose to stand, but the orthotist said since she was molded while laying down for this one, she has to lay down for us to put it on. I would say get yourself used to putting it on and taking it off without help. Bracing can last a while and you don't want to have to depend on a second person to put it on. Not meaning to be blunt, sorry if it comes across that way. Your kiddo also will play on how they see you reacting to the brace. The times I'd be more panicky and insist on help, the less helpful and agreeable Grace would be. You know the old

saying..."never let them see you sweat!"I still use pullups with Grace. She isn't potty trained and she's almost 4 (in 2 weeks) and because of a potential tethered cord or other bladder issue we won't be anytime in the near future. I take her brace off every time we change her. However, because of this bladder issue, she doesn't wet very often (3-4 times a day) so it isn't as much of an ordeal.I also have a hard time finding shirts long enough for Grace because she has such a very long narrow torso, so I depend, sadly, on the pullup to help protect her skin under the brace.If your kiddo is crying and complaining every time, put the mommy ears on. Its like when they are tiny baby's. There are true pain cries and then there is the frustrated, I don't want to do this kind of cry. Which is it? If it is truly a pain cry, then have the brace

checked out. JaneFrom: Lynn Marsden <lynn_marsden@...>infantile scoliosis treatment Sent: Fri, August 20, 2010 10:15:00 AMSubject: Brace Questions

Hi all

Well, I'm not feeling really sure if now is the appropriate time to announce that Peyton went into his first brace after 8 castings. I know many of you are still struggling with the casting road and I don't want to in any way rub salt in open wounds. I just have a few bracing questions. First of all, it is not going smoothly which I anticipated. The fact that Peyton has low muscle tone does not makes things any easier. Out of brace he is a floppy mess! Im hoping that in time he will build up some trunk muscles. Also it almost looks as if the casting has deformed him. He has a large indentation in the sternum area (not cast related I dont think) that the doctor said can be operated on and corrected so thats good but his chest wall is way too skinny, I literally don't know how his chest can hold his organs in there with enough room to function safely. Has this happened to anyone after casting

is finished. He spent 14 months in casts (no breaks) and now Im wondering if we should have insisted on breaks. Anyway here are my brace questions...

1. How do you diaper with a brace on? The undershirt makes it impossible to diaper and push up under the back of the brace. I can't take the brace off by myself so when my husband is at work I just tuck the diaper up the back as best a possible.

2. Did any of the kids have a really hard time adjusting to the brace? Its almost like everytime I pick him up or move him he whinces like he is hurting.

3. How do you know if the brace is on right or if its too loose or too tight?

4. Did anyone elses child experience extreme weakness after the casting and if so how

long did it take to build back up some muscle in the torso?

Thats all for now however Im sure I will have more questions as time goes on. Thanks so much for any advice

Lynn.

[Guest guest]

I can't believe this time is here already. Makenna has 7 days left in her cast!

She was fitted for a brace at her last casting and she has an appointment next

Monday. I am full of a whole new set of worries and anxieties - I suppose this

is the next chapter...

She is getting a Willmington (?) brace - I think, I can't find my notes! Anyone

else had one?

I haven't had a chance to ask any questions of the Dr yet; that will be on

Monday. What questions should I ask? How many hour in/out? How often do we get

follow up? Do they re-xray every time?

I am soooo nervous about compliance and regression - so this is where anyone

with a history can be helpful. I am worried on my part as well as hers. I'm

afraid it will be too easy to let her " not wear it " - and this is where I need

you to all harp and tell me I HAVE to make her wear it

This will not be a transitional brace for her, I don't think. She will likely

never be out of brace until she is done growing. Her underlying condition makes

the scoliosis progressive by nature and the onset can be at any time during

growth; so we'll have to keep a very careful eye...

Thanks for any advice anyone might have!!!!

Amy

mom to Makenna. 3 yrs old, 4th cast. Treated at Chicago Shriner's.

[Guest guest]

I hope all goes well for lil Makenna!We're not anywere near bracing, but I willkeep her in my prayers.Do all children wear braces until their done growing, after casts? Question for anyone.God bless,Mama to Kaitlyn Sent from my iPodOn Oct 4, 2010, at 3:29 PM, "Amy" <amscales11@...> wrote:

I can't believe this time is here already. Makenna has 7 days left in her cast! She was fitted for a brace at her last casting and she has an appointment next Monday. I am full of a whole new set of worries and anxieties - I suppose this is the next chapter...

She is getting a Willmington (?) brace - I think, I can't find my notes! Anyone else had one?

I haven't had a chance to ask any questions of the Dr yet; that will be on Monday. What questions should I ask? How many hour in/out? How often do we get follow up? Do they re-xray every time?

I am soooo nervous about compliance and regression - so this is where anyone with a history can be helpful. I am worried on my part as well as hers. I'm afraid it will be too easy to let her "not wear it" - and this is where I need you to all harp and tell me I HAVE to make her wear it

This will not be a transitional brace for her, I don't think. She will likely never be out of brace until she is done growing. Her underlying condition makes the scoliosis progressive by nature and the onset can be at any time during growth; so we'll have to keep a very careful eye...

Thanks for any advice anyone might have!!!!

Amy

mom to Makenna. 3 yrs old, 4th cast. Treated at Chicago Shriner's.

[Guest guest]

yay Makenna!! Drue was one of the few lucky ones that only had two casts. We started at 40* and are down to 10* in our second brace. Our dr. does not require Drue to sleep in the cast. I put it on about 30 min. after he gets up in the morning, about he gets about 30-45 min. before bed time for bath and play time. I leave it on during nap time. Drue is just turning two in a few weeks, there are tears/whining when i put it on, he now says,' Too tight!" But I strap it on anyway! Once he knows it is on, it's like nothing to him. Our brace guy said 3 is the magic number when they start to throw a fit, so good luck with that!

To be TOTALLY honest with you---when we first got the brace--I hated it, and longed to go back to a cast. I had rearranged my life to fit cast life, and then it changed a good, which was a good thing, but I had to figure out new ways to do things. I know some people put the diaper under the brace, but that was too much for me to take off a shirt, to get to the brace, to get to the diaper, etc, see where this is headed? So Drue is almost potty trained and he wears a pull up on the outside of the brace. We have only had 1 incident that it went up the back when he was sick. This way, I can pull the pull up down and not have to have the tears of brace on again, off again. I even have him nap in but I think my sitter takes it off during naps only. I think drs. are different just like with casting when it comes to compliance. I keep it on all the time, and it's harder for my husband than Drue.

If you can request, I suggest you have the straps put on the BACK of the brace so she can't undo them. I did this with Drue and am so happy.

We do in brace xrays each time. I think in January, I hope, we get out of brace xrays. However, they tell me that as long as the is holding him, that's all that's important now. He too, will probably be in brace until he stops growing since it is progressive. Cast life seems so long ago, so we have to hope at each appt. the brace is doing what it should or at any time, casting may occur again

Hope this makes sense-if you'd like to talk, email me privately and we can exchange numbers. You are right, it is a whole new chapter of worries that goes along with scoliosis! and JimmyMommy and daddy to Grace, 10, Tryston, 5Drue, 1, out of cast #210* in brace, down from 26*, started at 40*In second braceSt. Louis Shriners Hospital

I can't believe this time is here already. Makenna has 7 days left in her cast! She was fitted for a brace at her last casting and she has an appointment next Monday. I am full of a whole new set of worries and anxieties - I suppose this is the next chapter...She is getting a Willmington (?) brace - I think, I can't find my notes! Anyone else had one?I haven't had a chance to ask any questions of the Dr yet; that will be on Monday. What questions should I ask? How many hour in/out? How often do we get follow up? Do they re-xray every time?I am soooo nervous about compliance and regression - so this is where anyone with a history can be helpful. I am worried on my part as well as hers. I'm afraid it will be too easy to let her "not wear it" - and this is where I need you to all harp and tell me I HAVE to make her wear it ;)This will not be a transitional brace for her, I don't think. She will likely never be out of

brace until she is done growing. Her underlying condition makes the scoliosis progressive by nature and the onset can be at any time during growth; so we'll have to keep a very careful eye...Thanks for any advice anyone might have!!!!Amymom to Makenna. 3 yrs old, 4th cast. Treated at Chicago Shriner's.

[Guest guest]

It seems like brace wearing will be a breeze after casting. We haven't done

casting yet, but my daughter has been in a Boston brace for about a month now.

She turned 3 in June. She's supposed to wear it a minimum of 16 hours a day,

which means she gets some breaks from it during the day at which time we go to

the park and she gets some good exercise.

The straps are on the back of her brace, but she can still take it off herself.

I use gummy bears or M & M's to reward her for keeping it on and that works well.

I also set aside special activities that she can only do when she is wearing her

brace (eg. playing games on PBSKids.org), which makes it easier to get it on

her. Now she'll ask me " can I put on my brace and play games on the computer? "

She is potty trained, so I bought her some underwear that is a size larger and

just put those over the brace. She can pull them off herself and go potty.

One problem we are having is riding in the car with the brace. I got her a

booster seat so that she could sit straight up, but she cries when she sits in

the car with the brace on and says it hurts her. She'll wear it all day long at

home and be fine, but as soon as we get in the car she starts complaining about

the brace. So right now I have to loosen the straps whenever we ride anywhere,

then tighten them back when she gets out of the car. I try to plan most of our

trips during her hours off from the brace.

[Guest guest]

Amy,

Sorry I am just now seeing this. All I can say is BE STRONG! And don't take it off even if she is crying! Man, that is hard!

All those questions sound right. At the beginning we went every 4 months. Now every 6 months. always has a new xray. And if it is a new brace an xray in the brace as well.

She has to wear it! End of story! It is hard, believe me, read my most recent post, but we(Moms)have to be the ones setting the tone. As hard as it was tonight I did not take that damn brace off! And I SO wanted to!!!

will more than likely wear a brace until he stops growing.Keep me posted!

TashaMommy of 5 year old twin boys- and Fort Worth, Texas is treated at Texas ish Rite Hospital in Dallas, TexasSeries of 6 casts for 14 months followed by bracing since September 2007You can read 's story at.... http://www.infantilescoliosis.org/stories.html

From: Amy <amscales11@...>infantile scoliosis treatment Sent: Mon, October 4, 2010 2:29:21 PMSubject: Brace Questions

I can't believe this time is here already. Makenna has 7 days left in her cast! She was fitted for a brace at her last casting and she has an appointment next Monday. I am full of a whole new set of worries and anxieties - I suppose this is the next chapter...She is getting a Willmington (?) brace - I think, I can't find my notes! Anyone else had one?I haven't had a chance to ask any questions of the Dr yet; that will be on Monday. What questions should I ask? How many hour in/out? How often do we get follow up? Do they re-xray every time?I am soooo nervous about compliance and regression - so this is where anyone with a history can be helpful. I am worried on my part as well as hers. I'm afraid it will be too easy to let her "not wear it" - and this is where I need you to all harp and tell me I HAVE to make her wear it ;)This will not be a transitional brace for her, I don't think. She will likely never be out of brace

until she is done growing. Her underlying condition makes the scoliosis progressive by nature and the onset can be at any time during growth; so we'll have to keep a very careful eye...Thanks for any advice anyone might have!!!!Amymom to Makenna. 3 yrs old, 4th cast. Treated at Chicago Shriner's.