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scoliosis anyone?

Gadzukz

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My 12 year old daughter has just been diagnosed with scoliosis. No one in my family has ever had this, and I don't know much about it. Her MD is referring her to the Shriner's Hospital, but from my understanding there is not much they can do. I have started her seeing a Chiropractor even though the medical community seems to think that is a waste of time and money. I worked for a Chiropractor for many years, and he is still a family friend, he is treating her for the next two weeks for free while she is at her Dad's house. When she comes home we have found a Dr. here to continue to treat her for $60 a week.

Has anyone here dealt with scoliosis? If so have you tried Chiropractic with it? What can we look forward to? I am very very worried about her, and she is very upset about what it will do to her. Any advice is welcome.
 

MissMySphynxBoys

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I have no experience with Scoliosis, although I remember reading a Judy Blume book called Deenie which was about a girl who had scoliosis and a back brace.

Try not to let the worry get the best of you both. All I can do is send you and your daughter my love and support. Hopefully someone here can give more valuable advice.
 

jovanna

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I have read that some kids can develop a curvature in their spine from carrying heavy book bags on one shoulder for many years. It is best to carry a backpack and place the straps over each shoulder (not slung on one shoulder) to distribute the weight evenly.
 

Nair Bare

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Holy cow, your family needs some GOOD news. I'm so sorry to hear about your daughter's condition. I'm sending tons of good wishes, strength, and a pinch or two of some luck to your family.
Remember that your daughter will pick up on the attitude that she sees in her parents. So keep a stiff upper lip and guide her carefully thru this hurdle. Something tells me that your entire family is very strong and she will benefit greatly from watching how others deal with this set-back.
 

marlene

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My youngest adopted brother has scoliosis, has had it ever since he joined our family when he was 10. He's in his late 30s now and has never been treated for it. I don't recall there being any treatment for it when he was a child. It's not very severe, you wouldn't know he has it unless he took his shirt off. It's affected his self-image because he'd rather die than let someone see him with his shirt off; but he still grew up normally, got married and had 4 kids and goes to work.

Speaking as an RRT, you can expect a decreased lung capacity for the lung on the side that the curve is towards, which makes sense because that lung is compressed between the spine and the ribcage. But it shouldn't affect her normal health or daily activities unless the curvature is very severe. Chiropractors can do wonderful things, especially for pain management; but I'm not certain how (or even if) their therapy would be effective for a congenital disorder like scoliosis. That's something you'd need to discuss with her physician.
 

Gadzukz

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Thanks Marlene, right now at age 12 her self image is fragile to begin with. Do you know the degree of his curve? Hers is 18 right now.
 

ssummers

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I have scoliosis. My curve is 18-19 degrees. I got diagnosed in late elementary school, and I'm in my mid-20s now. I haven't really encountered major problems, and I never sought treatment. If you look closely at me, you can tell I have it. My hips are uneven and one of my shoulders is higher than the other and my clavicle sticks out more on that side. Honestly, though, no one has ever noticed unless I point it out to them. Good luck to you and your daughter!!
 

Bella07

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I don't know anyone with scoliosis, but with parents like you, I know that your daughter will do nothing but succeed in life and find a way through this! Sending best wishes and good thoughts your way.
 

Gadzukz

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I have scoliosis. My curve is 18-19 degrees. I got diagnosed in late elementary school, and I'm in my mid-20s now. I haven't really encountered major problems, and I never sought treatment. If you look closely at me, you can tell I have it. My hips are uneven and one of my shoulders is higher than the other and my clavicle sticks out more on that side. Honestly, though, no one has ever noticed unless I point it out to them. Good luck to you and your daughter!!
Thanks ssummers~ has your progressed since elementary school? The Drs. tell me it may or may not progress, but there is no way to know. I hate feeling helpless about it. At 18 degrees, you can't tell anything is there on Wynter, even in a bathing suit, she is very tall and thin so I am surprised it doesn't show. She went for a school physical and when she touched her toes she had to bend her left leg to do it, that's when they noticed.

We are going to try Yoga too, can't hurt ya know?

Mike~ is it very noticeable in your dad?
 

susi794

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Bronwyn, Am sorry to hear this about Wynter--but she comes from strong stock. Teenage angst is hard enough as it is without having to go through anything in addition to that which is normal. I have known a few people with scoliosis--some hardly noticeable and some quite severe. The people involved never seemed to be horribly bothered by it--but the one with a severe curvature was quite elderly.
If you can't tell by looking at her and you are exploring chiropractic and yoga and other treatments, at least you are being proactive rather than reactive. I can't tell you about scoliosis but I can tell you about being disfigured. She isn't so bad off, but the spirit of what I am telling you is the important thing here. Like any other personal tragedy it takes some getting used to--the first time I actually saw what this hernia looked like I almost fainted. When I tried to get a garment to support it, so I lcould go back to work, I put it on and left for school for the first time in half a year. The garment was terrible--it pushed my abdomen way, way up one one side and I looked like some kind of a freak from a horror movie. I fell into an almost hysterical crying jag when I got there and my principal came out and held me in his arms and told me that I was loved and that I had been missed. He said I was so much more than my misshapen body and that if I didn't act like a victim no one would treat me so. And he was right. You are her mom and if you take her seriously, acknowledge there is a problem , and tell her that the two of you are going to do whatever you can to make sure this thing never becomes an issue in her life, but that if it does....if it does, she is much more than the curve of her back. Tell her that she is beautiful inside and out and that if she doesn't allow herself to be a victim or think, "Poor, poor me!" that chances are no one will even notice--and if they do, just let them ask a question if they need to, then go on about your business and they will soon forget it ever existed. That's a pretty tall order for a teen, but if there's a possiblity that it could continue to curve, you need to start laying the foundation now.
 

klreese

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wow, i'm sorry to hear about your daughter's diagnosis. i'm glad to see you are being pro-active about helping her with some relief.
 

Gadzukz

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Thank you all very much for your replies. I had read that it was fairly common, so I thought maybe there would be some here with experience. It helps to hear other people's stories and how they handled it, too.

Susi, your response made me cry. When Wynter comes home, I am going to read that to her also. Thank you so much for sharing it with me
 

susi794

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Thank you all very much for your replies. I had read that it was fairly common, so I thought maybe there would be some here with experience. It helps to hear other people's stories and how they handled it, too.

Susi, your response made me cry. When Wynter comes home, I am going to read that to her also. Thank you so much for sharing it with me
I love you and your family, Bronwyn. I just wanted her to know that people aren't defined by what's wrong with them, but by what's RIGHT with them. And I can tell by all I have read and know about you that Wynter already has a lot right with her.
Give her a big, huge hug from me and tell her that a crazy cat lady from Michigan thinks she's wonderful just the way she is.
 
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Give your daughter a big hug for me! When I was in 7th grade one of my best friends found out she had it as well. She never had to wear a brace or anything, the drs. just monitored her and she went to a chiropractor as well. She continued to play sports, show horses and everything just as before.

I have heard and read that Yoga helps a lot. You may want to go that route as well. At this point, nothing was causing her issues before, no one could tell there was anything going on, she didn't look any different, so just because she was diagnosed, this doesn't change that. It isn't like she now all of a sudden has a sign that say "I have Scoliosis". No one will probably ever know unless she tells them.

Hugs and Purrs from us all!
 

tessblack

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Sorry to hear that but seems like she is not alone. I don't know much about it but seems like she can manage it. Yeah anything extra when you are a kid is hard, especially now adays with all the pressure on kids to look a certain way. You guys seem like you have a very strong family so you guys will get through it.

Stay strong.
 

Tammy Robbins

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Hi, my name is Tammy Robbins and I work at Shriners Hospitals for Children - St. Louis. First off, I'd like to say that if your daughter's physician is recommending that she be seen by one of our 22 Shriners Hospitals for Children for her scoliosis, definitely do it!

Shriners Hospitals for Children specializes in orthopaedics - and, in the case of our hospital here in St. Louis, we have the world's foremost experts in scoliosis. Our doctors in St. Louis literally wrote the book on treating children with scoliosis.

It's easy to become a patient at Shriners Hospital - feel free to contact me directly at trobbins@shrinenet.org and I can not only put you in touch with the hospital nearest you - I could also put you in touch with some of the folks here at our hospital to give you some reassurance about your daughter's condition. We even have a great support group with other patients and families who have been treated at our hospital.

These are the doctors at our hospital who treat scoliosis. Google them and learn more about their excellent reputations:
Lawrence Lenke, M.D.
Keith Bridwell, M.D.
Scott Luhmann, M.D.

Here's our website - Shriners Hospitals for Children: How You Can Help.

Also, all care at our hospitals are provided at no financial obligation to families. If you don't have insurance - or your insurance won't cover the treatment - our hospital will take care of all the costs. Nothing will come out of your own pocket.

People come to our hospitals because we have the best doctors in our pediatric specialities - the fact that there's no financial obligation is simply "icing on the cake."

Please let me know if I can be of further help to you.
 

Gadzukz

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Hi, my name is Tammy Robbins and I work at Shriners Hospitals for Children - St. Louis. First off, I'd like to say that if your daughter's physician is recommending that she be seen by one of our 22 Shriners Hospitals for Children for her scoliosis, definitely do it!

Shriners Hospitals for Children specializes in orthopaedics - and, in the case of our hospital here in St. Louis, we have the world's foremost experts in scoliosis. Our doctors in St. Louis literally wrote the book on treating children with scoliosis.

It's easy to become a patient at Shriners Hospital - feel free to contact me directly at trobbins@shrinenet.org and I can not only put you in touch with the hospital nearest you - I could also put you in touch with some of the folks here at our hospital to give you some reassurance about your daughter's condition. We even have a great support group with other patients and families who have been treated at our hospital.

These are the doctors at our hospital who treat scoliosis. Google them and learn more about their excellent reputations:
Lawrence Lenke, M.D.
Keith Bridwell, M.D.
Scott Luhmann, M.D.

Here's our website - Shriners Hospitals for Children: How You Can Help.

Also, all care at our hospitals are provided at no financial obligation to families. If you don't have insurance - or your insurance won't cover the treatment - our hospital will take care of all the costs. Nothing will come out of your own pocket.

People come to our hospitals because we have the best doctors in our pediatric specialities - the fact that there's no financial obligation is simply "icing on the cake."

Please let me know if I can be of further help to you.
Thank you Tammy! We should be going to the hospital in Greenville SC, it's about an hour drive for us. Our family Dr is a Shriner, and my husband is a Mason, so we do have lodge support. We do not have insurance so the no cost issue is a huge help to our family! We have just finished the application, and should have it in by the end of the week. After that I do not know how long it takes to get an appointment.
 

ckutkuhn7

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Hey Bronwyn, Sorry for the late response. This isn't meant to scare you or your daughter, its just my story.

In 5th grade I was diagnosed with scoliosis. Classmates found out and immediatley outcast me as a freak! Kids can be cruel you know. I don't remember what degree my curves (yes two curves) were but I had a S curve in my lower back and a C curve on my upper back, one was horizontal and the other vertical. (My s curve went from side to side and my c curve went from my back to front, hope that makes sense)
The doctors my parents took me too wanted me to have a rod surgically placed into my back, drilled into my spine. It would cause me to have to be home schooled and I wouldn't be able to bend over or simply falling could have been a threat to my life. My parents let me decide what I wanted to do. The thought of a metal rod up my back terrified me at 12 years old so I said no and after a while everyone at school forgot about my problems.
I'm glad I didn't go through with it. I would have had to have that rod until I was 18, thats no way for a kid to grow up. To this day its difficult to see that I have it. I outgrew most of it but I'm 5"6 and if my back/neck were straight I would be 6"1. My pants or shorts always fit one side higher than the other,,lol but I just hem them so no one can tell. And looking at me from the side you can see my neck falls forward instead of sitting on top of my shoulders. I have pain if I sleep wrong or sit or stand for too long but I just take something. I'm very prone to throwing my lower back out. Sometimes when I sneeze I throw my back out for weeks at a time.
I hate to think of what I'll feel like at 50 if this is what I'm going thru at 32 yrs old but its all apart of life.
This isn't meant to scare you or your daughter. Its just the facts in my case. Everything depends on how severe her curve is. The doctors will give her exercises to do anywhere from daily to 3 times a week, these exercises look so easy but they are painful. I didn't do mine!! Make her do hers so she doesn't end up like me!! lol I blame myself alot for not doing them in the earlier stages when it mattered. It might have prevented the trouble I have now.
Also my boyfriends cousin (also a close friend of mine) as scoliosis and hers is more severe. You can tell her body is turned as she walks and she has a limp. Hopefully your daughters isn't that bad and simple exercises and spinal care will help her retrain her spine and stregthen it.
Also growing up I had a friend that had been born with it. My the time he was 18 he had had 20 surgerys. I don't remember anything ever stopping him from what he wanted to do.
This isn't a handicap, its just a learning experience of finding out a different way to do things and take care of yourself.
Goodluck and I'm here for you if you or your daughter have questions or need someone to talk to.

xoxo
CK
 

susi794

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You know, after reading the above post and thinking about others I've read on this forum--including my own, it strikes me how trusting we all are with each other--we tell real things, painful things, intensely personal things to each other in the hopes of helping someone else, and sometimes just to get some help for ourselves. I've said it before, but I think it bears repeating. I'm so proud of this group of people...and I am honored to call you my friends. I've interacted with a lot of very kind people on this forum--who give all they can to help others in need. Or sometimes just extending their hands in friendship to one of us who's feeling afraid or lonely or frustrated, I have been a member of other places, but have never quite felt the level of kindness anywhere else that this group of folks offers. It's really quite amazing.
Just wanted to let you know when I'm counting my blessings--you all are there! Thanks to you all.
Much love from me and the gang,
Susi
 

ssummers

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Thanks ssummers~ has your progressed since elementary school? The Drs. tell me it may or may not progress, but there is no way to know.

Sorry for the delay! Mine increased about a degree as I grew and finished going through puberty, but it wasn't significant. A brace would have been an option had it been any more severe, but I was a pretty active kid, so I didn't want to do that!

I LOVE yoga, and it really strengthens your core which can only help!
 

Gadzukz

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Thanks so much to you all for sharing your stories. Susi, I totally agree, Sphynx people ROCK! I Luvs You Guys!:Laugh:
 
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