Scoliosis Support Group

I am the mom of a 13 year old boy who just got his brace in August. His curve was 34-26 (s shape) and jumped to 39 - 43 in four months after growing 2 inches. He HAD to get into the brace, and get up to wearing it full time (22 hours) within two weeks. I know what you are going through - it is awful to watch your child in so much pain. However, please know that it does get better. It took Jared a week, and then all of a sudded it wasn't that bad. But, the first week was awful. I wish I knew it would get better when we first started.
here are some suggestions. Allow your daughter some control over the time. Let her pick when she wants to wear it, and if she needs to take it off let her. Rub her skin with alcohol after each time. The skin does toughen up, even though it seems barbaric at the time. Wear a light t-shirt under the brace to absorb the sweat. Let her know that the pain (if she feels it in her ribs or her back) is actually a good thing, because it means the brace is working and pushing things around. The other thing that we found is that when my son wore the brace in the beginning, we had his friends around. When he was with us he thought about the brace, When he was with his friends, he was more like himself. It was amazing. It was summer time, and we had friends come over every day just to be with him. They learned to help put the brace on, and encouraged him to keep it on.
Another thing that we did, if your daughter will sleep in the brace, is we got mattress topper for his bed. We got it from Overstock, and we got the the "cool" memory mate because it doesn't get as hot. It made sleeping with the brace so much better. In fact, I got one for my bed afterward because I liked it so much!
It's been three months now, and for the most part, the brace has become a part of his life. He can still play football, and take gym. He just takes the brace off and puts it on when he is done. That keeps him going as well. We let all his teachers know that if he needs to go to the nurse to take it off he can, or if he needs to stand a bit because it is hurting they should let him. We also got extra sets of books at home so he didn't have to carry as much. He's never had to do anything at school (except when the strap on the brace broke!) but it made him feel better that he could do what he needed without explaining anything to his teachers.
I know I've been very detailed, and I hope that you find this information helpful. It will get better, for your daughter and for you. I actually think it pulled us together as a family, because even his older brother got involved in helping him.
Good Luck!
Debbie

hey my name is leah im 13 years old, i recently just had surgery for scoliosis back in august. I never had to wear a brace becasue no one ever thoguht to take me to a docter about it. I started noticed my sholder blades looked all messed up and there was this bump thing on my back. When my parents noticed this too and took me to the docter he said I had idiopathic scoliosis, he said it was to small to do anything like getting a brace. To be sure he took X rays when he looked at them he was very surprised becasue my spine was alot werse than it looked it was 52 on the top. He said that we would have to see a docter in Pittsburgh, so we did. My docter recommened surgery. On the pre opp date my curves haad increased to 61 on the top and 36 on the bottum. I was really scared. The surgery made me 2 inches talled. Since your daughter got a brace i have no experiance with that so sorry. But i dont really belive they work becasue i met quite a few friends on here who had braces for more than three years and ended up having the surgery. I dont mean to scare you, but some people;s never get that bad

email me at leah14130@aim.com
for any questions :)



leah

Dear Debbie- I'm new to this so I'm not sure if I'm responding the correct way. Thank you for your advice. I've been struggling as to what to do and what is best for my daughter. Your advise gives me and her much to think about. It truly helps to hear from others who have been through this. Your son, when he was first diagnosed, was he having back pain. Right now, my daugher has no pain and is able to do everything she wants with no restrictions. The couple of times she tried wearing it was painful and it totally limits her. She was in tears and is now refusing to wear it. She loves to dance, play volleyball, basketball. I'm wondering if maybe we rushed into the brace. My thoughts are to monitor her and have her measured periodically. If we see she is getting worse, then we can then try the brace again.

Debbie - Just realized that I repeated alot of what I said in my original message...
Leah - Thank you for your advice, hearing from you who have been through this will help greatly with out decision making. How was the surgery and is your recovery going? Hope all is going well. One thing I'll say is that I have faith that my daughter will be fine no matter what direction this whole situation leads us. All we need right now is the strength and courage to make the best decisions for her. Hearing from you all definately helps. Thank you!

Good luck with your daughter. If you decide to wait, please make sure that you bring your daughter in often for x-rays. When we found out about my son's scoliosis. We went for a brace, and then decided to wait. We tried chiropractic instead. We brought him back to his doctor for a follow-up in four months, and his curves got much worse (see other message), and then we had to do something immediately. I think for my son, knowing that we tried something else was helpful when he had to struggle through the first week of pain. He had no pain prior to his diagnosis, so being in pain for him was crazy. He just wanted to have surgery instead, but obviously that's what I wanted to avoid if at all possible. When he struggled, we reminded him that we tried everything else, and there was no choice in order to help him. Your daughter may respond the same way, knowing that you waited, and it didn't get better (or got worse).

The other thing that we are doing now is physical therapy with machines designed specifically for scoliosis to isolate and build the muscles directly around the spine. His ortho didn't approve of it as a replacement for the brace, based on scientific studies, etc., but she does support it in conjunction with the brace. Let me know if you want more information about that.

Good luck with everything.
Debbie

Hi Debbie - thank you again for your advice. By the way, my name is Debbie also. It's going on two weeks since we got the brace but still not able to convince my daughter to wear it. I'm going to look into alternatives such as Chiropractics. I would like more information on the machines you mentioned. You can contact me off-line at deb_brown@q.com Look forward to hearing from you.