Updated: post # 4 OT-DD 7 just diagnosed with juevenille idiopathic scoliosis

[DisneyMama63]

DD 7 was just diagnosed today with juevenille idiopathic scoliosis. She has two curves. One in her thoriac spine of 29* and one in her lumber spine of 37*. Given her age and severity already her doctor has referred her to an orthopadic specialist. We will see him Wednesday. Does anyone have any tips with having a child with this condition?

Caitlyn

 

[SueM in MN]

No information, just sending lots of pixie dust.

 

[Karalynn]

from me too!

 

[DisneyMama63]

We saw the orthopedic today. He was very nice and a kid-friendly doctor. He evaulated my DD with the adam's forward bend test and detemimened that she does indeed have scoliosis. He did a set of x-rays and determined that she actually has 3 curvesne in her cervical spine of 19*,Thoriac of 29* and lumbar of 37*. After deteriming treatment options, we decided the best thing for her is 23/7 bracing in a modified Milwaukee Brace. She was casted/measured today, and we will pick up the brace next Friday.

I am worried about her overheating in Disney as she will be wearing(basically) a plastic corset around her torso. Any tips to help her stay cool?
Caitlyn

 

[spokanemom]

I really wish that I could give you something happy, but I hated it. I am now 34 and had to start the brace when I was 13. Yes, that was a long time ago, hopefully they have made some advances with it. My mom made cotton undershirts for under the brace. That helped a bit. It was really uncomfortable though. I wish you and your daughter the best. I tried several things, including the brace, but ultimately I had to have rods put in. I wish you and your daughter the best. If you have any specific questions, I will be glad to offer up whatever I have. Again, I send my best for you both.

 

[eternaldisneyfan]

My mom wore the old Milwaukee brace for several years. It will definitely be an adjustment. I hope the brace works for your daughter. I have neuromuscular scoliosis caused by my Muscular Dystrophy. My curve was a big 'c' shape curve of 125 degrees but was corrected to 35 degrees with a combination anterior/posterior fusion with Luque rods anchored in the pelvis. Bracing is often helpful and improves idiopathic scoliosis. Surgery is recommended for idiopathic scoliosis if the curves get above 60 degrees...

You might want a GAC to wait out of the sun/indoors. I would also carry some Motrin with you for pain management.

I hope you have a good trip!


Christamae

 

[Absimilliard]

When I was 15, I got diagnosised with scoliosis. I had 2 bad curves.. but luckily, my spine was still growing, so they put me in the brace and it worked. My curve is almost normal and beside constant pain, due to a slip on ice when I was 16, I'm ok. I've just learned to deal with it... It didn't stop me from doing anything.

Good luck and pixie dust yourway...

 

[LindsayDunn228]

I had scoliosis, and I mean BAD, when I was 9. I ended up having to have rods in my back. Worked like a charm. I have no pain and am straight as an arrow. I wore a turtle shell for about 6 months after the surgery and that was it.

 

[lovespoohbear]

scoliosis from md here. just wanted to give

 

[luvmarypoppins]

My heart goes out to your dd. I too had scoliosis. Mine was so bad they skipped the brace and went right to the surgery.I had 2 rods but one of the screws popped off so they took them out. How about the water squirt bottles to keep her cool? Also if you are going in the summer and she only gets 1 hour out of the brace I would say definetely use that for swim time etc. Go to the parks early when its cooler etc. Blessings to your family.

 

[DisneyMama63]

Thanks for the advice. I have purchased a memory foam topper for her bed. She gets the brace friday. To help her meet her goals of breaking in to the brace I will give her small rewards. Thanks for the suggestions. I talked to a friend whose DD also has scoli, and when they went to disney a few years back, they used her stroller as a wheelchair, and put ice packs around her,mounted a fan to the front of the stroller, and had her wear one of those cooling bands. I thought about using the stroller as a wheelchair, but that would mean I would need to ask my sister to go with us, so that she could push DD7,I would push DD5, and my dh would push dd 3. Any suggestions? We are going april 5-15 of this year if it helps.
Caitlyn

 

[yoopermom]

Another scolie gal here (we really should start a support group!), wore a Milw. brace from age 12-16, not a very pleasant experience, so *anything* you can do as a parent will be helpful. Definately watch for sores/chafing and overheating. Don't forget the psychological aspects of wearing it, too. I think your idea of mini rewards is excellent.

Hugs to your daughter, and tell her that she can do *anything* she wants to do (as long as the dr. oks it!). Swimming helped me, physically and mentally, and I showed horses, played team sports, etc, all with it on, too.

Good luck!
Terri

 

[bopper]

I don't know anything about scoliosis treatment...but as your trip is coming up so soon, have you talked to the doctor about not starting the treatment until after she comes back? or taking a break from treatment while you are there? Or only wearing the brace at night (while not at the parks)?

 

[minkydog]

I don't know anything about scoliosis treatment...but as your trip is coming up so soon, have you talked to the doctor about not starting the treatment until after she comes back? or taking a break from treatment while you are there? Or only wearing the brace at night (while not at the parks)?

This was exactly my thought. My DS10 was in a brace when he was about 3 and it was miserable--sometimes in the summer he would be so hot he'd just throw up. I can't imagine going to WDW in one of those things How long would she have to wear it? How bad would it set her back if she just wore it so sleep in that week?

 

[maria & rossi]

I also have scoliosis and wore the milwki brace at the age of 13, but also ended up have the lucque rods fitted as the brace didn't work for me. I'm now 37yrs old and have 2 wonderful children and live a normal live. The most difficult time for me in the brace was sleeping in it. I agree with the other threads that swimming is good for the hour that she's not wearing the brace. It would be good if you could put off having to wear it until after the trip but every child is different and your doctor may not advise this. I really don't know what to suggest to cool her down as living here in the uk the weather was never a problem, maybe plenty of drinks and a water fan. When I look back over the years when I found out about my scoliosis I know it sound daft but I have some fond memories of the people I met during this time, but I can still see the anguish/worry on my mum's face everytime she looked at me. I think these years were far worse for her than me. I hope you have a great vacation and if I can be of any help, please ask. Maria

 

[DisneyMama63]

Thanks for the suggestions/advice. I will ask Dr.Thomas about not wearing the brace while at Disney when we go to pick it up Friday. If he doesn't okay it,we will just deal the best we can.
Caitlyn

 

[LuvN~Travel]

Surprisingly our daughter did not complain about wearing hers when we went back in '97 in May. I was really surprised, too. She has since had back surgery for rods and that wasn't a problem for us the last two trips.
I would just use the hints the other's have suggested, and try to give her some pool time to be out of it for awhile since she will still be getting used to it. Our daughter had to start wearing hers at age 5, so we know about the reluctance factor.
Also, have the doctors evaluated her for any possible other neuro complications like hydrocephalus, and Chiari Syndrome? The two together are what caused our daughter's Scolisosis. I would definitely ask them for all of the possible causes of this at an early age. Especially if it was one or both of these, a possbile shunt may be in the works.
Good luck on your upcoming trip.
Kim

P.S. Does she seem to have any complaints about her energy levels? We had to definitely take Faith in a wheel chair due to endurance problems each time we've gone with her. You might want to keep that in mind, or if your daughter is small consider taking a stroller for her.

 

[DisneyMama63]

Surprisingly our daughter did not complain about wearing hers when we went back in '97 in May. I was really surprised, too. She has since had back surgery for rods and that wasn't a problem for us the last two trips.
I would just use the hints the other's have suggested, and try to give her some pool time to be out of it for awhile since she will still be getting used to it. Our daughter had to start wearing hers at age 5, so we know about the reluctance factor.
Also, have the doctors evaluated her for any possible other neuro complications like hydrocephalus, and Chiari Syndrome? The two together are what caused our daughter's Scolisosis. I would definitely ask them for all of the possible causes of this at an early age. Especially if it was one or both of these, a possbile shunt may be in the works.
Good luck on your upcoming trip.
Kim




P.S. Does she seem to have any complaints about her energy levels? We had to definitely take Faith in a wheel chair due to endurance problems each time we've gone with her. You might want to keep that in mind, or if your daughter is small consider taking a stroller for her.

The doctor did not do a neurological exam at her initial appointment. Is that something I should ask about when we go to pick up her brace tomorrow? Are these disorders common in juevenille cases, or is more likely that is really idipathic? She does have stamina issues, and is very tall and lean for her age. She has flat feet and is double jointed/can wrap her fingers around her wrist.
Caitlyn

 

[Earstou]

The doctor did not do a neurological exam at her initial appointment. Is that something I should ask about when we go to pick up her brace tomorrow? Are these disorders common in juevenille cases, or is more likely that is really idipathic? She does have stamina issues, and is very tall and lean for her age. She has flat feet and is double jointed/can wrap her fingers around her wrist.
Caitlyn

Chiari is considered to be rare, but with the scoliosis I would definitely check it out. Especially with the stamina issues and the double-jointedness. An MRI is needed to check for Chiari.
The Chiari Institute (TCI) in NY has discovered that about 30% of their patients also have EDS (Elher-Danlos), some with hypermobility of the joints. Here is a link to TCI with a link at the bottom to a video about the connection: http://www.chiariinstitute.com/index.html .
I have Chiari, with very mild scoliosis and know a child who had severe scoliosis and Chiari.