Scoliosis & Long Car Trips??

[SammiesMomma]

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. We are about to get her the Spinecor brace which is a newer brace to the USA, it is made in Europe. It's a soft, flexible brace, kind of like a bunch of ace-bandages or a girdle. 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??

 

[tinkerbelletreasure]

My DSD is almost 13 and had sever scoliosis. We go to the ortho surgeon in 10 days. We did Disney in March and she was fine for the 22 hour car ride there and back. Her problem came on walking around the parks. It caused her to have side pains and we had to stop often.
We are more nervous about travelling with her after the surgery. Her mother lives 2 hours away and she is supposed to visit back and forth weekly. Somehow I don't think that will happening for the first couple weeks.

 

[Janell]

I was diagnosed with Scoli when I was 12 years old and had two surgeries when I was 13, I am not almost 33. I live in daily pain, the surgeries stopped the curing, but didn't take away the pain.

I understand your daughter not liking tight close, for me its because its hard enough to move, tighter close just bug me. Im sure the brace wont bother her once she gets use to it. And if it takes away her pain, she wont mind waring it. I wish her good luck with that.

Long car rides just kill me. I can't sit that long. We have to stop often for me to stretch and move around. As I grew older I realized that I don't like staying in one spot to long. Even when sleeping I tend to move a lot.

I have fallen in love with a few items that really do take away the pain. One is MBT shoes. I had a pain for 20 years that nothing would take away. These shoes take the pain away. I am so amazed. Its all I will ware, in fact I just bought sandals for our trip in Aug. Im not sure if they will have her size. If they don't please keep the name, she may need it later in life. They are pricey and there are cheaper ones out there. But they are just not as supportive. For the average person Im sure the cheaper ones are fine. But for your DD and they pain she may live in, get the MBT. I would have her(when ever she can/they have her size) try them on in the store, but order them on line. They are cheaper on line. I found for myself I needed to order a size larger then I would normally. Im not sure why, but they fit better when I do.
http://us.mbt.com/Default.aspx?lang=en-US

Other items that have helped me are from the relax the back store. If you don't have one close, no worries, just order on line.
I love love love the self inflating lumbar pillow. I have an "S" curve still in the 30'-40' range(I forget its been awhile since I was messengered) This pillow is easy to carry with you anywhere, I take mine to Disneyland and World. Its a great relief during the day. Because the rides and chairs when you are out and about aren't all that great. It also helps in the car a lot. I do have the cover they offer for it. It helps sometimes when in different chairs, but not a must have for me.
http://www.relaxtheback.com/self-inflating-back-rest-rectangle.html

I also take with me on car rides, planes or even just at home, the memory foam seat cushion. I love anything that is memory foam(I even have a 15" memory foam bed which is the only bed I can really stand, before this bed, I never slept well) The seat cushion isn't as portable for in the parks, but good enough for the plane and car. I have read they have inflatable seat cushions and will be trying that soon.
http://www.relaxtheback.com/travel/seat-cushions/the-seatcushion-by-tempur-pedic.html

I also use a walking stick when doing a lot of walking. Sounds crazy, but it helps. Mine is like the link below, but I have a rubber tip at the end. Why it helps, gives me stability after a long day of walking. Its nice to lean sometimes and take pressure off my back. Your DD maybe to young for this, but its good to keep in mind as she gets older. You never know what works for people.
http://www.rei.com/product/745686

About 4 years ago I found a physical trainer who was a physical therapist. He is god sent let me tell you. Working with him has taken away so much of my pain. He has give me stretching exercise that really do help. (if you are in or ever will be in So Cal, let me know Ill pass along his information)

My trainer has be do stretches for about an hour before even getting out of bed, which really helps. Not sure if would help your DD. Ive lived with this for 20 years and with a desk job I have gotten ever tight and I need to do a lot of stretching to keep the pain down. Anyhow, so I also travel with an exercise ball which helps too.

Oh and I take memory foam to put on top of beds when traveling. I also ice my back down after a lot of walking. I have one suite case full of the items to make life less painful.

I didn't realize all the items and things I do/have to help. I hope this does't scare you. Scoli can be painful and some people its not painful after surgery. For me the surgeries helped a lot. Before I could barely walk the mall. Now I can walk the mall, but as I have gotten older my body gets tired quicker, just like everyone else.

I would be happy to answer any questions you may have. I am so sorry your DD has it at such a young age. At least she is in a era where technology is better. I hear the new surgeries are so much better then what even I had back in 1991. I knew a women who never could have surgery because it didn't exist. So these days are better, even on the days it doesn't seem like it. And I know as a parent its harder on you in so many ways. Its never easy to watch someone you love go through something like this. Hugs to you.

Oh and a side note, since your DD will have many xrays ahead of her. My parents are in the medical field and they saw me go through xray after xray till the tech got the right spot. talk with your xray tech and ask them how they know they have the right spot before they shoot the xray. For my day, they had cornates some X and Y numbers. They gave those numbers to my parents and each time I got xrays they lined it up right so I wasn't over exposed. I think tech has changed now. But your DD is so young, you want to limit her exposer when taking xrays.

 

[DVC96]

I was diagnosed with a 43 degree curvature when I was 16. I was never braced nor have I had any surgery (although that is still a possibility). I am now almost 51 and my curve is at 63 degrees. It has not changed for the last 20+ years. I do participate in a study for adults with scoliosis at Walter Reed - so I am not the only one out there! I am very active - I run to keep my lung capacity up - and have no problems walking. I do suffer from lower back pain on occasion and have to be careful about how I sit (especially in an office chair) and what I sleep on, but so does my husband and he does not have a curve! We make the long drive from Nothern VA to FL at least twice a year - sometimes all the way to south FL - but we make frequent stops on the way there to stretch, etc. It's such a long ride for little ones anyway - is it possible for her to not wear the brace in the car?? Or can you possibly split the drive into 2 days? My daughter has a friend who wears a brace and travels frequently by car to MI. His parents let him take it off in the car. I wish you all the best wth your daughter's treatment!
P.S. I have a friend who had the surgery as a young teenager (she is 50 also) and has never had any problems with it. She is super active and has had 5 kids!! (None of whom have scoliosis!)

 

[poohbear8]

My DD (13) also has scoliosis. For a time, we thought she was going into a brace for her mild curves. She has been at the watch and wait stage for 1 1/2 years now.

I just wanted to offer these sites in case you haven't found them. They were very helpful when I found out they wanted to brace her. (they parents there told me to get the second opinion since I didn't feel I would EVER let dr #1 operate on DD, since we didn't like or trust her. Dr #2 said wait and she hasn't changed since)

http://www.spinekids.com/
http://www.iscoliosis.com/

Both have message boards and an area for kids so they can meet other kids who have braces and/or scoliosis.

 

[SueM in MN]

I am going to move this to the disABILITIES Community Board since it is not directly about WDW.

 

[Tikestoublie]

My DSD is almost 13 and had sever scoliosis. We go to the ortho surgeon in 10 days. We did Disney in March and she was fine for the 22 hour car ride there and back. Her problem came on walking around the parks. It caused her to have side pains and we had to stop often.
We are more nervous about travelling with her after the surgery. Her mother lives 2 hours away and she is supposed to visit back and forth weekly. Somehow I don't think that will happening for the first couple weeks.

Hi there. I too am a mom of an almost 13DD. Her surgery was last September. Because she has progressive scoliosis we had to make plans for surgery 4 days after diagnosis. But, went really well. Certain if your DD has to have it will as well. Modern medicine for this has come a long way.

I can say that after surgery even a short car ride was awful. The trip home which was only about 10 miles almost undid my girl, and she was in hospital a week. It was not until about 2-3 weeks out that she tried the trip to Dad's - about an hour one way. It required many pillows strategically placed around her and being super careful of how and where we drove. Bumps were bad! She did make it though and it got easier. The harder part was school and buses. Unable to attempt that till about 2 months out.

Hope a little of that helped. If you need anything please feel free to message me. I know how daunting this all can be. Our kids are amazing though. Certain she will surprise you.

 

[Tikestoublie]

Ok, posted this in the scoliosis thread but since this one is actually active right now figured it would be good to post here as well.

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.

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.

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. But I know my girl, she wants to go on ALL the rides. 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.