Scoliosis

dizzi

DIS Veteran
Joined
Jan 25, 2007
Messages
7,054
Just found out today that my almost 13 year oldDD has scoliosis.

I am very sad and worried for her.

We have a family reunion trip planned to Universal and WDW in 5 weeks from now,

Does any one know if she can ride most of the rides with a brace on?

Will we be able to take the brace on and off for the rides,she is only allowed to have it off an hour a day for the next year and half.

Any info on the ride issues or other would be helpful I NOW NOTHING about this disease.:confused3
 
dizzi,

my 15 year old daughter also has scoliosis. She was diagnosed a 3 years ago and has been wearing a brace for 1 year. We recently returned from disneyland in California. During our trip we allowed her to keep the brace off during the day if we knew she was going to be rinding the bigger/rougher rides. If we were simply going into the parks to watch fireworks ect then she wore the brace. My daughter is very good about wearing her brace. She amazes me with her positive outlook about her disease. The main rides that will cause problems in Floridia are Space mountain, expedition everest, rock and roller coaster and big thunder mountain as these all have some side to side jerkiness. It all depends on what type of brace your daughter has. My daughter has an extra metal bar at the top because in addition to a lower curve she has a higher curve which makes the bar necessary. It would be very uncomfortable and possibly bruising for her to wear the brace on a ride that is jerky ect.

If your daughter is like mine she will suprise you with her resiliance. A couple of years in a brace now will hopefully help her avoid many complications in later life. Hope this response helped......Zazu
 
Hi,

I used to read the Baby-Sitter's Club books and one of the later books in the series dealt with a girl who was either 12 almost 13 or was 13 just like your daughter whose twin sister had scoliosis. It went through a lot of the basic emotions for both girls and some of what it was like to wear a brace and how the other kid's in the book reacted. The twin girl's were named Abby and Anna, it would be one of the Abby books. I will try to find out exactly which one it is for you if you would like. I always liked reading about kids who may have been like me and it helped when I was facing something new and uncertain.

~Fairy

ETA: The book is from the Baby Sitter's Club series number 104, Abby's Twin. I know this does not involve trip planning but I thought it might be something good for your daughter if she likes reading to help her with accepting her disease.
 
ZAZU......Thankyou so much for your words of wisdom We need all the encouraging we can get right now.

FAIRY......Again,thankyou too...And i would LOVE it if you could find out the name of the book...I WOULD LOVE to get it for my DD she is just starting to get the BUG for reading and i think this would be awesome!!!
 

I posted it above, but just in case it's #104 Abby's Twin from the Baby Sitter's Club series by Ann M. Martin. If I still had it I would send it to you but I donated my YA collection (and it was huge!) to a library that was just starting a few years ago.
 
At one time, I was a school nurse and did scoliosis screening. So, I know how the diagnosis can really shock and surprise people. Hopefully, your daughter's treatment will be as successful as people I am aware of.

WDW does put warnings on certain attractions. Their 'basic' warning says that people with neck or back problems should not ride these attractions.

You can look at the park maps for the attractions with warnings - they are marked with a red triangle on the map and also on a sign at the entrance to the queue.
For Epcot here are the attractions with warnings:
  • Mission Space - the more wild side is the Orange Side. Both the more tame (green side) and the more wild (orange side) jolt you around, mostly forward and backward. The Orange side also has a centrifuge action that spins the entire ride cars.
  • Test Track - this is a simulation of the testing that cars go thru before manufacture. It includes swerving, sudden stops and sudden acceleration.
For Magic Kingdom:
  • Splash Mountain - you go down several drops. The largest is very long and steep and you may get jolted at the bottom.
  • Big Thunder Mountain Railroad - a fast, winding roller coaster
  • Tomorrowland Indy Speedway - the problem here is that these are gasoline engine cars, many of them driven by children. The cars have hard molded seats and you can get rear ended by other drivers. The hits can be quite hard.
  • Space Mountain - will be opening back up in November after renovation. It is a roller coaster
  • Goofy's Barnstormer (this doesn't have a triangle warning sign on the map, but does say that pregnant women should not ride, so it is not totally tame. It is a short roller coaster - about 90 seconds)
For Disney Studio
  • Star Tours - this is a simulator ride of a spaceship being driven by an inexperienced space pilot. There are sudden changes of direction and you can get bumped around quite a lot.
  • Rock N Roller Coaster - this is a roller coaster, although a very smooth one. It does some inversions.
  • Tower of Terror - the idea is that you are on a spooky elevator that leaves the elevator shaft and goes into the Twilight Zone. You are sitting on hard seats and go up quickly, then back down, up and down a random number of times.
For Animal Kingdom:
  • Kilimanjaro Safari - this is a "2 week safari" in "a game preserve in Africa," so it is bumpy. You are going over simulated dirt roads and can get jostled around a lot.
  • Kali River Rapids - this is a ride down a rapids in a rubber raft. Because it is free floating in a channel, you can get sudden drops as the raft goes thru the rapids.
  • Expedition Everest - a roller coaster
  • Primeval Whirl - VERY rough. This is like combining the Teacups with a roller coaster. Smaller riders (or those who can't brace themselves well) can get thrown around a lot.
  • Dinosaur - this is a simulator where you are riding in a Jeep like vehicle through time. It is very rough.

Soarin' is one that people frequently think has warnings, but it doesn't. It is actually a very gentle ride on a simulated hang glider.

Most of the rides have molded plastic or molded fiberglass seats, which may not be the most comfortable for your daughter to sit on.
Spaceship Earth and Haunted Mansion do not have any warnings, but people with neck or back problems often find them problematic because at one point your ride car will turn around backwards while it goes down a hill with you lying on your back. Some people with back problems find this uncomfortable because their back is resting on the hard seat. The backwards area is fairly long, but not jolting.
You can find a lot more about individual attractions here, on another part of the DIS site. This is a link to the MK page to get you started, and there are pages for each attraction, with pictures and in some cases, even youtube videos.
When you get to the parks, you can ask CMs at the entrance questions about attractions. If you are really unsure whether or not she will be able to ride, ask the CM if someone else in your party can ride first and get an idea about how the ride is. Even if she can't ride, she should be able to come thru the lines with you (sometimes the queues are quite entertaining, then leave just before the rest of your party boards and wait for you at the exit.

If she needs to take the brace off, you can do that in First Aid in any of the parks. I would not suggest taking it off for attractions - with the getting it off, walking back to the ride, riding and then getting it back on, it would consume most of the hour.
You should talk to her doctors, but if it was my child, I would use the 1 hour out of the brace for activities like swimming (and depending on her curve, the doctor may allow it off longer for an activity like swimming because the water supports your weight and swimming is good exercise.)
 
I was diagnosed with scoliosis when I was your DD's age, and was in a brace for about 2 years. We did go to WDW while I was wearing the full brace (with the metal neck piece). The doctor told me to go ahead and leave it in the room while we were in the parks.

I think I would have been really uncomfortable walking around the parks all day with it. Especially so soon after being diagnosed. For the first few weeks, I remember being really uncomfortable, since it was forcing me to stand in a position I wasn't used to being in.

Ask her doctor though - they'll be able to tell you how best to handle it.

Jen
 
First, let me send you some <hugs>. I understand your feelings. My DD was diagnosed when she was 11, right before 6th grade started last year. Her curve was slight, so they told us to wait. She is a competitive dancer and our world was rocked when we were told she might have to wear a brace. When we went back, the dr said he was going to brace her due to the slight change. I found a specialist who worked with children and got a second opinion. She told us to wait another 4 months. Thankfully, she had a growth spurt and she told us to wait again. She goes in right before my surprise trip to see where the curve is now. We think she might be ok, but we are still prepared for the brace.

There are several websites that were lifesavers to me when I first found out.

http://www.scoliosis.org/forum/index.php

http://www.iscoliosis.com/

http://www.spinekids.com/

There are books out there for kids also.
Plastic Back by Anne Rakes is supposed to be a good one. Deenie By Judy Blume is also, but read reviews of it first. It deals with a sexual subject. (PM me for details if you can't find it)

I read Stopping Scoliosis by Nancy Schommer.

Search your library also for books. I spent the most time on the websites I listed. They were supportive and understanding.

Feel free to PM if you have any other questions. Also, as for the original question....ask her dr. what they think. I'm betting they will say wear it when she can, but not on the rides. That is what I would do. She waited this long to get the brace...a few more hours won't make that much of a difference. She can still wear it to sleep in and if you go back to the hotel before a meal.
 
I was diagnosed with Scoliosis when I was 4 or 5. My mother has it so they were checking my sister and I regularly since birth. I had a severe S curvature and started wearing the brace when I was in 7th grade. I really hated that stupid brace! The vanity of youth. My curvature was progressing rapidly and I had steel rods placed on my spine in 8th grade. The surgery went well and I am perfectly fine now. I have two young children and a very strong spine. They are checking my children every year, but so far they are scoliosis free. It was a tough experience, but kids are strong. I hated being different, but have no lasting issues. If my children have scoliosis, I will deal with it. I always think there are many, many worse things that I could have had. I consider myself lucky that my problem was treatable.

As for the rides, I would say let her have fun. Any opportunity to go without my brace was heaven. Have they made the braces any less hideous? I remember there was just no piece of clothing that would hide the damn thing.:sad2:

Feel free to PM me if you want any more first hand knowledge

Good luck!
 
I think the most important thing is to talk with her doctors.
If they say she can take it off for rides, but not the whole day, she can remove and put it back on in First Aid. Theycould also store the brace for you.
Whether the doctor feels it's OK to go without the brace and for how long, will depend on things that we may not know.
If it's OK to go on rides without the brace, ask the doctor whether the back and neck warnings still apply to her. With a brace on, they would because it could be quite painful to be jostled around with the brace on. Without the brace, the warnings may apply or not, depending on where the curve is and the degree.
My youngest DD has cerebral palsy and also has scoliosis. She is not braced and has no rods or anything. She goes on anything that we are able to secure her well enough. She has a fairly small curve that is not progressing.

So, check with the doctors and see what they say.
 
Thankyou all soo much.

Yes i believe they have made the brace abit less noticable.

Or maybe alot less byt the looks of what she was measured for today.

So wont be too long now until she has it.
 
As for the rides, I would say let her have fun. Any opportunity to go without my brace was heaven. Have they made the braces any less hideous? I remember there was just no piece of clothing that would hide the damn thing.:sad2:

Feel free to PM me if you want any more first hand knowledge

Good luck!

My dd13 has a congenital scoliosis diagnosed at age 2. She has two curves, one about 30 percent and one about 40.

Her braces are really nice compared to what one of her friends has. They are very light weight and molded plastic with velcro straps. She has a different one for day and night. When she gets a new one she picks the pattern or color (currently Tye Dye for night, white for day). She gets her braces through Shriners. Her brace isn't really visible if she is wearing anything more than a thin tshirt.

She goes without at Disney during the day and rides pretty much everything. She would get too hot otherwise. What bothers her the most is water slides at the parks. If we do the water park she is sore the next day. Her night brace is very restrictive so her doc is ok with occasional off during day but we really are on the 23 hour on schedule.

They are deciding in four months if she will need the surgery or not as wrist xrays show growth about done. If she doesn't get surgery she will wear brace another 2 years. If she gets surgery they will do the anterior approach and operate from the front instead of the back using a new type of rod.

Hopefully we won't have to go that route.
 
WOW girlfriend you got a boat load of kids!

I started to feel bad becasue i didnt know, that maybe if we had found out sooner it would have been better.
 
WOW girlfriend you got a boat load of kids!

I started to feel bad becasue i didnt know, that maybe if we had found out sooner it would have been better.

Yep I got a boat load :)

You shouldn't feel bad. Most scoliosis is NOT detected that early and your dd13 may not have had much or any curve before starting puberty/growth.

When we go to Shriners on "scoliosis day", we see ALOT of preteen girls all there for the same thing. Every one lugging around their braces. The younger kids seem to be the exception, as are the boys and a lot of the younger ones we see have other medical issues or physical disabilities. My dd is termed congenital and the doc told us most are idiopathic or not born with and origin unknown.

Is she getting a plastic brace? My dd just got her new night one and I never did figure out how to post pictures, but I have a facebook where there are
some pics of how oddly shaped her night brace is :)

If you want to see, pm me and I will give you my facebook name.
 
I have scoliosis and Was diagnosed at 6 years of age and had spine fusion at the age of 11. I wore a brace for the inbetween years. I remember it was most uncomfortable due to heat. It also took a few weeks to get used to it.

I had a much more severe case and I think that becuase your daughter is 13 and just diagnosed that menas she doesn't have as much growing left which means she is most likely going to be alright. I suggest read up and remeber that everyone degree is not the same severity and don't take severe cases as a prognosis.

I'll spare you the rest of the story becuase it isn't applicable to the treatments offered today.

:grouphug::grouphug::grouphug::grouphug:
 
Lynn, I know that your post is a few years old & everyone's response, as well. I'm hoping you are all still on here & can help me. Lynn, I am very sorry about your daughter. I know your situation all too well. How is your daughter doing now & how did she fair Disney??

My Daughter is 6 years old and was diagnosed with Severe Juvenile Scoliosis a little over a year ago, when she was 5. We have been in the watch & wait stage. The ortho surgeon wants to perform surgery, of course. We want to try bracing her first. After all with a child this young, once you operate it's a sentence for more surgeries every 6 months until she's fully grown to adjust the growth rods :o( We are about to get her the Spinecor brace which is a newer brace to the USA, it is made in Europe. Her back is beginning to ache her all the time so I am really hoping this will give her some comfort. I know it is going to take some getting used to. She is already quite head strong with regards to the comfort of her clothes, to put it nicely - lol. She doesn't like anything tight, so this should prove to be a challenge. Although, she has been asking for the brace because she knows it will help her back. We're hoping it will make it so we don't have to have surgery done, at least now while she's so young.

My question is, her & I are flying from NJ to Florida in a month to stay with my parents for a chunk of the summer. We're flying down & my Dad wants to drive us back home. After thinking about it, I'm not sure if she should be subjected to being in a car for that long of a drive. My parents drive straight-through, they don't stop overnight. It's a 16-18 hour trip. She already complains of her back aching. I can't imagine how much it will hurt being stuck in a car that long. Even with the brace on, I'm sure it wouldn't be comfortable. Or maybe because of the brace, it would especially not be comfortable?? Anyone out there have any thoughts or experience they'd like to share with me about this??
 
I have a DD12 who was diagnosed with scoliosis last summer. How I missed it I will never know. When I took her in her curve was already at 60! In 6 weeks it jumped to 65. Needless to say, we saw a surgeon within the week and had surgery scheduled. :scared1::sad1:

Thankfully she is a strong girl and has healed really well. Her surgery was at the end of September last year. Now, we are trying to plan a return trip to Disneyland next month. She has no brace, walks and moves around fine. Still has restrictions but am hoping those will be lifted when we see her surgeon later this month. :yay::woohoo:

What I am curious about is whether others have been to Disney after their surgery and how the walking and rides went for them? I am prepared that the walking standing will take its toll, even if she doesn't think so. :rolleyes1 But I know my girl, she wants to go on ALL the rides. :headache: Most research I have done says at 10 - 12 months they can usually do this. Still getting other opinions, more specific to amusement park activities seems sensible to me.

Of course, in the end it will be a decision that involves Mom and the Dr.

Thanks for any info you can provide. If the other Mom's are still out there - thank you for sharing your stories. It is always nice to know you are not alone. :grouphug:
 
Well,

I am still here.

My Dd is 13 now.

And i too was shocked to learn i had missed that she had scoliosis.

I wont lie..........It has been a night mare getting her to wear her brace.
She has had it tighted 3 times now and each time she complains for many days about it hurting etc.

She was told at the begining she would have to wear it for about a year if she wore it 24/7.

After the first week i knew she would have to wear it much longer because i was not going to have the arguement every day about her waering it to school.

So she wears it from the time she gets home from school until morning.
Unless it is cheer day and then she has to take it off for cheer.

Luckily her was not as bad as some.

Good luck to you all, but i owuld think the younger children would be easier to wear the brace.........BUT I HAVE BEEN WRONG BEFORE!!! :)
 













Receive up to $1,000 in Onboard Credit and a Gift Basket!
That’s right — when you book your Disney Cruise with Dreams Unlimited Travel, you’ll receive incredible shipboard credits to spend during your vacation!
CLICK HERE








New Posts







DIS Facebook DIS youtube DIS Instagram DIS Pinterest DIS Tiktok DIS Twitter

Back
Top