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Old 03-08-2013, 05:01 AM   #1
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12 yr old with scoliosis

hi about a yr and a few month ago my daughter went in for physical and her dr said oh she has scoliosis we has to travel 2 hrs one way to see the dr for her she has been sick for about 2 months before that and had lost 20 LBS which i had told them that well as the weeks went on she had put all 20 LBS back on and the brace take was way to small they insisted that it was still fine and put larger straps on the brace it wasnt ok it was to small it would bruise her hips on both side and they still wouldnt replace with larger so she didnt wear the brace i kept taking her to the chiropractor 1 to 2 times a week she was always in pain so went back to her dr who found the scoliosis and told her what happen probably 5 months without the brace she found me another dr much closer they ordered the brace that took from nov to end of feb this yr they changed the type of brace and how many hour to be worn now its a bending brace and she got to choose zebra strips she started during the week and cant sleep at all felt bad she went to school pasty white with black ring so today is friday so tonight we will try again i told her she would wear it all weekend and we will see if she can get some sleep in it at least she will be able to take a nap during the day she started with one curve in the lower back it was at a 22 now the lower is a 27 and she now has a upper of 12 her spine is all the way to the left side of her ribs we still go to the chiropractor every week and she is still is in pain the dr say there is no pain with scoliosis but she says there is and her back is as hard as a rock is there some way to help her get use to the bending brace she cant sit up in it as it bends so far over to the side and why was that type picked for her and is there anyway to help with the pain
haylie wear your brace
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tank you

Last edited by theresacp; 03-08-2013 at 05:12 AM.

 
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Old 04-02-2013, 10:02 AM   #2
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Re: 12 yr old with scoliosis

I was told not to go to Chiropractors. They could mess up and bend the spine... My neck bone is not normal by birth so I cannot do that. Go to physiotherapy.
Also check with 2nd opinion. I know someone who had pain at her tailbone so bad and they found some tumor in the spine and the op. saved her.
There may be some issues with the spine for the pain so she needs to get a second opinion. Not sure about the brace - is it to correct her scoliosis? Sometimes the scoliosis is birth defect and cannot be cured. It is best to deal with the posture in the long-term via physiotherapy. I have scoliosis by birth. I do have some mild pain around my spine but not like her. Acupuncture helps to release the pain.
Please seek for another spine doctor for another opinion.

Hugs,
Nina

Last edited by ninamarc; 04-02-2013 at 10:03 AM.

 
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Old 04-03-2013, 03:13 PM   #3
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Re: 12 yr old with scoliosis

I can certainly understand your concerns, as I went through this with my daughter about 19 years ago. My daughter was diagnosed with a serious s curve, but can't remember her numbers now. She was seen by several doctors where we live and they said they needed to do surgery. They said they could do it here, however, if I was going to have someone messing with one of my kids health, or spinal cord I wanted a second opinion.

After much research I found Dr. Lawrence Lenke, one of the leading researchers and experts in scoliosis. He was with St. Louis Children's Hospital (he's still there) and when we went to see him, I finally felt safe and at peace that this facility and doctor could help us. My daughter needed surgery and it was pretty serious stuff back then. They did a rib resection and used the bone from there for grafting instead of the hip. She was in intensive care for several days then they started rehab with her. Thanks to Dr. Lenke and his team, my daughter was running up and down flights of stairs in less than 2 weeks as part of her rehab before she left. It was cutting edge at the time, and she never had to wear a brace before or after her surgery. She's married and has 2 of her own daughters now, and even with rods in her back, her pregnancies were normal without back problems.

Good luck with finding the right answers for your daughter. I know how my heart hurt for my daughter having to go through that journey, and how frightened I was for her. We both grew and gained strength during that time and I wish that your journey is as successful. Prayers your way.

 
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Old 04-06-2013, 04:12 PM   #4
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Smile Re: 12 yr old with scoliosis

Hi! I wasn't sure if this thread was still active but I thought I'd share my experience with scoliosis in our family. Four of my five chldren have scoliosis. They are all active adults. My second daughter had the worst spinal twist - her spine is shaped like an S and her one shoulder is lower than the other. We went to a specialist who had just attended a big conference on the topic of scoliosis and he made a radical suggestion - he told us to try physio and for her to just stay active, always do exercise, try to keep her weight down, to never carry more than 1/4 of her weight and to live her life. He prescribed naproxen ( anti inflammatory) for days when the pain was bad, which she turned out to be allergic to. (she uses ibuprofen and tylenol) He told her that each pregnancy might worsen the condition so she should do all her activities and sports now when she was young. My daughter went on to climb Mount Robson twice, hiked the West Coast trails , made the badminton team for the BC Winter Games and joined soccer. She is in her early 30s now , has had five children and continues to be physically active. She jogs and does exercise and dance and tries to keep her weight down. She does have some back pain but much less than we expected! We followed this route with the others who have scoliosis. We were told NOT to ( NEVER) go to the chiropractor as this could cause a lot of pain and swelling. My oldest daughter (in her 30s) had to do more physio when she had a growth spurt in her teens and has kept up with the exercises they give her. She too climbed Mt Robson and was into sports. She is now a postal carrier! She has some early arthritis in her knees ( we are prone to this too, in our family) but is still very active. Two of my sons are married, with children and play soccer. They get more back pain but not enough to limit activities. One son gets some headaches and occasional rib and leg pain, because of where his twist is.

So this is our family experience with scoliosis. No braces or contraptions, just physio, physical activity to keep the muscles working and the weight not too high. We have treated spasms with rest, ice and heat. The newest recommendations are no surgery and no braces. I don't know how bad a case of scolisis your daughter has, but just sharing our own experiences. I would think it's a good idea to get several opinions. Maybe you might be able to take this approach with your daughter and know there is hope for a normal life!

 
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Old 04-08-2013, 03:11 PM   #5
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Re: 12 yr old with scoliosis

What a wonderful success story with your children and their experience with scoliosis. We only agreed to have surgery for my daughter because the twist was so bad that it was compressing her lungs and she couldn't breathe. They told us it wouldn't be good when she started her growth spurt that it would cause permanent pulmonary problems. We've been grateful that it turned out so well for her.

I love hearing success stories that don't involve a lot of medical intervention and more natural approaches. My grandmother was 106 when she died and never took prescription drugs, had 8 children, worked and lived in her own home until the end. She claimed her health was good because she stayed away from doctors!!! LOL (sometimes I think she knew more than we do!)

Thanks for sharing your story, it took me back many years ago with my daughter, and I'm sure by sharing your children's success, it will help many others facing the same situation with their own children.

 
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Old 04-20-2013, 04:30 AM   #6
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Re: 12 yr old with scoliosis

I was happy to read how your daughter recovered and went on to live a normal life! I'm almost glad that we found out about my childrens scoliosis before I had access to the internet. What if I had made the decisions I did and it was the wrong decision for them? I know of families whose children had it as bad as your daughters and that must have been a hard decision. You did what was right for her and I'm sure your love and support had a lot to do with her recovery. It always amazes me how brave and resilient children can be.

Recently my step daughter was in a car accident and injured her neck. She also has scoliosis and I've wondered if this has affected the injury. She is fighting for an insurance settlement and finally had to go back to work. She has an 8 yr old and 1 year old child. I am glad that she really enjoys her job(special ed teaching assistant) but I do worry about her.

Bless all you caring mommies out there!!

 
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