Scoliosis in Children

Parent Q&A

  • 6 yo dtr diagnosed with Khyphosis/Scoliosis

    (2 replies)

    My 6 yo dtr was seen by Dr. Policy at Stanford Pediatric Ortho in December and diagnosed with 60 degree Khyphosis/6 degree Scoliosis, suggesting a, "wait and see approach," while also cautioning that my dtr should be seen/x-ray again in 6-9 months (rather than the typical 12 months) because of the early age onset typically results in more aggressive curvature and need for bracing/surgery.  I left this first appointment feeling both terrified and helpless :-( 

    After hours of obsessive research we've decided to purse Schroth Method PT for Scoliosis, as from what I've gathered, this is one of the most effective treatments.  I've heard from others that Dr. Diab at UCSF is terrific in terms of his ability to offer various types of scoliosis treatment and offers guidance/opinions on alternative methods.  I'm wondering if there are other families/parents out there who might offer other suggestions or ideas of pursuing less invasive treatment to address early Khyphosis/Scoliosis.  I'm also specifically interested in nutrition for prevention of further curvature, suggestions on local expert alterative providers to address Khyphosis/Scoliosis, and feedback on other activities that could be healing to the skeletal and neurological systems. I'm also wondering about possible request for a school 504 plan to give her access to school based OT to provide suggestions on modifications in the classroom, as she has difficulty sitting and staying focused, which may be related to her back. 

    Thanks in advance!

    Hi- there is a doctoral- trained physical therapist in Alameda, Dr. Suzanne Martin, who is an expert in non surgical treatment of scoliosis. Dr. Martin herself has scoliosis but she was able to have a career as a college dance faculty member despite that. She became a PT after that and treats professional dancers at SF Ballet as well as regular people like us. She is also publishing a manual to help train other physical therapists in the methods she has developed to treat scoliosis. She can be reached at 769-2917. I have seen her for various dance related minor injuries and her approach is to help you get healthy and maintain better health through exercises and stretches you can do yourself at home as appropriate. Good luck! 

     I can’t offer much advice but there are many groups on Facebook that may be able to help. 

     Best of luck 

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Archived Q&A and Reviews


Questions

Juvenile Scoliosis (5 year old)

Aug 2015

My daughter is turning 5 next week and has just been diagnosed with juvenile scoliosis and a 42 degree curve (via x-ray). We are going to try the Boston Brace TLSO to try and slow down the curve progression. We are in good care with UCSF and Dr Diab who is one of the few doing the Vertebral Tension surgery (that Shriners does), however it’s best on kids in the 10 year range (or else there need to be follow up/revision surgeries to lengthen the cable) so we are hoping she won’t progress too much over the next few years to then have that surgery.

I'd love to hear others' experiences with juvenile scoliosis and how fast your kids curves progressed. Did you brace? Did it slow down the curve? Any helpful hints about how to make the transition into a brace easier for such young kids, clothing to wear under it and where to buy it? We have so many questions! There doesn’t seem too be much info on experiences from kids with the juvenile form and I was told by 1 Dr at Stanford that it can progress really quickly in a year – up to 40 degrees in some extreme cases which is scary. Thank you!


My kid's diagnosis is very different, so my medical experiences won't help you, and I'm from a different area of the U.S., so I can't make any provider recommendations, but my child began bracing in September 2011 at age 8 and is just about to be fitted for a 6th (or is it 7th?) brace. So I can give you a little of what we have learned about bracing...

Do not underestimate the importance of your orthotist. For every one appointment we have with our orthopedist, we have three with the orthotist, and they are much longer appointments. It is the orthotist who gave us our first undershirts, and who has introduced us to new ones as they have become available. (My kid's favorite right now are Knit-Rite). The orthotist checks my child's skin and uses a temperature-sensing chip to monitor the hours of wear. The orthotist told us how to ease into a wearing schedule, and has made changes to the brace when it becomes too uncomfortable. The orthotist has flyers for local support groups on the wall, and is the one who takes the time to answer our questions and encourage my child.

When I think back to how I selected our orthotist, I shudder. The orthopedist handed me a prescription for a brace and a list with 10-12 medical device providers. I scanned the list for the most convenient location and lucked into a very good relationship. Please ask everyone you can for a recommendation and find an orthotist who is both skilled and personable. Anon


Progression of 10 year old's Scoliosis

Sept 2011

I have a 10 year old boy who was diagnosed with S shaped idiopathic scoliosis when he was 8. I understand that there is now a blood test which will show the likelihood of progression which can be taken after the age of 10 -- does anyone have any experience with this? At the 9 year appointment the curve hadn't progressed, but as we approach the 10 year appointment I can easily see progression, and am getting ready for a 23 hour/day brace recommendation. Any advice welcome! Thanks, another worried mom


Scoliosis, except in very extreme and unusual cases, is just a description of the spine in relation to some imaginary ''perfect'' spine. You can assume, for example, that among the people giving you this ''diagnosis'' for your son, some of them have ''scoliosis'' by their own definition (and they aren't living in braces). Where did they get this definition from? Someone gave it to them, and now their job is to pass it on to you. Do you want your son to live in a brace so that these people will have done their job well? No, of course not. Just think: every time someone ''diagnoses'' something, money moves from your pocket to theirs in one way or another. Please watch this video on YouTube: http://www.youtube.com/watch?v=cGma5bzOGww When you go to this video, along the right side of your screen you will also see lots of other videos with exercises for aligning the spine. You can also search online yourself with terms related to ''Exercises for Scoliosis'' and similar. Shame on the professions that bandy this word around, so that it lives and festers in the consciousness of the people they're supposed to be helping. Let them go their way! Let your son live his life--I bet he's healthy and gorgeous! Don't worry, or let him worry! There are many, many professional people like the one in the video--especially in this area!--who can fill you both up with positive, healthy, problem-shrinking kinds of advice and instruction. Please do not make the exchange you had about all this be life-defining in any sense. Seek out the positive voices that will help you neutralize the ones you've heard so far on this subject, and everything will be fine. Please Learn About Exercises for Spinal Alignment


Please check out Dr. Mohammad Diab at UCSF. He has an excellent track record with young scoliosis patients and has a ton of ideas/treatments for young children. The best part about him is that he defines mother's of his patients as part of the medical team and understands that mother's intuition is more valuable than most tests. http://www.ucsfbenioffchildrens.org/cgi-bin/expertDetail.cgi?doctorid=26572 anon


I have scoliosis and wore a Milwaukee brace for 2.5 years at the most inopportune time, from ages 13-15, 23 hours a day. My curves were moderate--not severe. I had a lot of back pain and soreness, which no doctor assessed for or made recommendations about, and my parents weren't educated about any kind of alternative treatments (yoga, massage, chiropractic).

In adulthood, I started doing yoga and found relief from the pain for the first time. Building core (abdominal) strength, and twisting poses, were especially helpful. I saw my first chiropractor, a warm Italian woman who was also pretty intuitive. My curve began to improve noticeably, even though I had stopped growing. She noticed that my curve was significantly better when I was consistent with doing yoga. It slipped back when I wasn't as rigorous with it. I've learned that the curve isn't static, it can get better or worse depending on stress, sleep, and how you take care of yourself. I'm not sure where she got her information, but she said braces weren't being used as often. At the time, she was treating a teenage girl for scoliosis whose parents decided not to go the brace route. More recently, a chiropractor I saw in the bay area also noticed my curve improve with yoga and chiropractic visits.

I'm not abreast of the latest technologies, but as a 33 year-old woman, I wish I had someone to advocate for other ways of healing besides the brace when I was 13. It was clunky, uncomfortable, and did nothing for my back pain. I'm not actually sure how much it helped. No matter what you decide, I would recommend finding a really good chiropractor to consult with--someone who has experience treating scoliosis. Molly


I did not see the original post, but would like to second the suggestion to reach out to Dr. Mohammed Diab at UCSF. He is currently treating my 7 year old daughter for scoliosis and we are very pleased with his care. In general, I would recommend getting multiple opinions in a scoliosis diagnosis, because there are many different paths to treatment, and many opinions out there. For young children with curves between 25 and 35 degrees, and significant growth ahead of them, there is a new procedure called ''Vertebral Body Stapling'' -- google it to find more info. I would also like to mention a recent breakthrough in the field of adolescent scoliosis (which would include a 10 year old onset case, such as your son's) -- there is a new, non-invasive genetic test that can predict whether a particular adolescent's curve will worsen. This could give parents an informed perspective as to whether it is worthwhile to pursue bracing. According to what I have read, in many cases, perhaps a majority of cases, of adolescent scoliosis, the curves are unlikely to worsen significantly after diagnosis. The explicit goal of bracing is to hold a curve, not correct it. So if a curve will not worsen, why brace? Google ''NY times scoliosis'' and you find an article titled: ''Scoliosis Test Lets Children Avoid a Brace'' to learn more. You may need to keep asking to find a doctor who uses the test, since it is such a new breakthrough. Good luck to you -- I know how confusing this can be. Mom in a similar boat


We are watching 10 degrees of scoliosis in my 11 year old who is also doing Alexander Technique for ideal back posture and health. My child's orthopedist, Dr. Tseng, in Berkeley and in Oakland, is excellent. He has a fellowship in spine and his training is top-notch. His is a conservative approach, and he says that if my child were to need bracing, which is not like the former medieval back brace, but a band around the torso, he will recommend doing so if my son has a 30 degree curve. Straight Up


Sorry to hear about your son's scoliosis. Maybe our situation is not comparable, but we took our daughter to a very good osteopath who was able to reduce the curvature such that it was no longer detected in a school check up. Her name is Catherine Henderson, and she has an office in Albany. The treatments are expensive, and we were fortunate to be able to afford it, so I don't know if it's an option, but figured you should know. She could assess whether she thinks such treatments could help. Anon.

[Editor Note Nov 2017: Catherine Henderson notified us that she is no longer practicing in California.]

 


10 year old recently diagnosed with scoliosis

March 2011

My 10 year old daughter was recently diagnosed with scoliosis and will be required to wear a brace 20 hours a day ''until she stops growing.'' So we're looking at 4 years or so, I imagine. She has a 26 degree curve and the goal is to keep it steady while she grows so we don't have to have surgery to stabilize her spine. I'm kind of floored since nothing like this runs in my husband's or my families.

I would like to know what other sorts of supportive therapy (besides the brace) we should be looking at for our daughter. I imagine that the brace wearing will affect her core muscles in the long run. Do they have pilates for kids? Should we consider yoga and/or swimming, too? She's not a sporty kid but of course she does PE in school and she loves to ride her bike. She can take off her brace for PE, bike riding, and exercise, but really needs to keep it on most of the day. I would love to hear experiences and advice from families who are living with this. L


Hi, I haven't gone through this with my own child, but I was a kid who had scoliosis. I wore a brace all through junior high school and into my first year of high school. It seemed like all my friends either were getting braces or their parents were getting divorced, so there was no one I could relate to on this (or so it seemed, maybe that's just the feelings of being that age!).

I wound up having a brace that went from my chest to the top of my hips, so I while I couldn't bend at the waist it was not obvious (it turned out later most kids never knew I had it, even though I felt like it was very obvious). I took what was called an ''adaptive PE class'' (for kids with disabilities) which allowed me to leave the brace on -- I could have it off for an hour a day and I didn't want to waste that on PE class (I think I'd take it off for an hour after school instead). Taking the PE class with those kids was an eye opener, and I think it benefited me in a lot of ways.

There is a book called Deenie (http://www.worldcat.org/title/deenie/oclc/800751) which is about a girl who has scoliosis. It's a book for tweens, and you might read it before giving it too your daughter. It's Judy Blume and written in 1973, so I don't know how well it's aged.

The good news is that I got through it. I wasn't athletic at the time, but I am now (age 43) and have no back troubles and no regrets about wearing my brace.

I'd be happy to talk to you and your daughter if you like. I don't have any medical advice to offer, but I can talk about what it was like in the ''old days.'' MP


I hope the MD who recommended the brace also stressed the importance of Physical Therapy! It's important that your daughter have a few sessions of PT to learn proper/safe body mechanics (lifting, backpack fit, etc) to avoid injuring her back, and strengthening and stretching exercises so that her musculature can support her better. She needs to see a PT first rather than a gym person as PTs are specifically trained in exercise prescription particularly with people who have underlying medical conditions and musculoskeletal dysfunctions. Please get a referral for a PT first, then she could do pilates or swimming or some physical activity that she enjoys, but she'll know how to do it safely! PT mom


Brace treatment for child's scoliosis

Nov 2010

Dr. Policy of Children's Hospital Oakland recently diagnosed my child with idiopathic scoliosis and has recommended a brace be worn for the next 3-4 years for 20 hours per day. Would be very appreciative of any comments regarding Dr. Policy and/or this treatment for scoliosis. Seems a very extreme protocol, especially with no guarantees of avoiding surgery. Worried Mom


I would get a second opinion. When my 14-year-old son, then a high school varsity runner, was first diagnosed with adolescent idiopathic scoliosis and a 23-hour brace was recommended, we both said ''no way!'' We switched to Dr. Peper Slabaugh of Webster Orthopaedic Associates for scoliosis care. My son wore a Charleston nighttime brace for a few years while continuing his active lifestyle and high-intensity athletic training. At 18, he completed his growth with the Cobb angle unchanged. His scoliosis now is stable and no further treatment is necessary. I highly recommend reading ''Scoliosis and the Human Spine'' by Martha Hawes. I found it very empowering. Been there


While I don't know a lot about using a brace for scoliosis (I thought that was the dark ages), this protocol does seem extreme...I DO know, however, that Pilates exercise is very effective in maintaining scoliosis. You don't say how old your child is. If he/she is old enough to pay attention and follow some direction, this could be helpful to balance the muscles in the back and hips. I know of a trainer in Alameda(Don't know her name...sorry) who specializes in scoliosis. Many Pilates trainers around the area are very skilled in working with people/kids with scoliosis. It would be worth checking out before agreeing to the extreme of 20 hours in a brace. Good luck. mom w/ scoliosis son


I have recent experience with Dr. Policy, and a diagnosis of idiopathic scoliosis. We got a second opinion at UCSF, which for us was very relieving, and have also been using some other practitioners that have been extremely helpful. I'm happy to talk to you personally about our experience, I've been quite involved in the process for the last several months and have quite a bit of information that I think could be helpful. Please ask the moderator for my e-mail address. anon


Our 5 year old just diagnosed with scoliosis

June 2009

Hi, Our daughter was just diagnosed with scoliosis, and we have our first appointment with the orthopedic specialist this week. So I don't know much yet -- how much of a curve (although I think minor at this point), treatment recommendations, etc. My question at this stage is really about how to talk about this with my daughter. Most advice online is focused on adolescent children facing a brace/surgery. I think I have good instincts on this, but it's always helpful to hear from others who have already gone through something. And of course, it would be nice to connect with other families who are dealing with this. Anyone out there have any experience with scoliosis with their young child? Many thanks


Contact the Scoliosis Association of San Francisco. It is run by Linda Racine, who has scoliosis. They have meetings They have a yahoo group. This is her website: http://www.scoliosislinks.com/ (650)726-0341 scoliosissf [at] comcast.net

Also National Scoliosis Foundation (www.scoliosis.org). The National Scoliosis Association is another well known group: http://www.scoliosis-assoc.org/

The BPN archives have posts to previous questions on scoliosis (in case you haven't searched them): http://parents.berkeley.edu/recommend/medical/scoliosis.html

Best of luck to your family. Your daughter is VERY LUCKY that you discovered her curve so early and she is getting treatment. Hopefully she will not grow up like some of us have with very visible and nearly disabling deformities. anonymous


Hi there! Some people have actually have good results with Feldenkrais. Get her on a swim team to stabilize her back and put her in dance classes. Consider gentle chiropractic care too...I love Reuben Ziegler in Berkely for chiropractic. Early age and small curve that is just a ''C'' curve, not an ''S'' , she may be a candidate for an electrode implanted on the concave side of the curve, which she activates at night, and in 2-3 years it tends to reduce or stabilize the curve. Wish you well!


Our 7-year-old grandson, with 15% scoliosis, was just found (via MRI) to have an attached spine. Unusual, but not extremely rare, his spine is attached at the bottom, so as he grows, the spine cannot grow as fast, and starts curving. The remedy, which he is having next week, is a fast and simple (we are told) arthroscopic procedure to detach the spine at the bottom. Either 0 or 1 night in hospital, two weeks of taking it easy afterwards. john


Hi there, I am in my 30s and have kyphosis which is similar to scoliosis except my spine is curved forward. I saw the note about swimming which was the same advice my parent's got. Being a type A personality, I became a competative swimmer swimming 4 hours a day, was recruited to swim for college, but eventually ripped up my shoulders so badly I had to quit swimming my second year of college and haven't been in the pool since -- too painful. My kyphosis feeds into my cronic back and neck pains (many years of PT and wearing a back brace didn't ever seem to make a dent in correcting the curve of my spine and I had reputable doctors at Boston's Children's hospital) but my swimming injuries (not the kyphosis) are what cause most of my pain. All this to say, have your daughter swim in moderation! She's only 5 now but if she takes to swimming, monitor the amount of yardage she is doing and inform her coaches of her scoliocis so that if she tells a coach she is experiencing pain, she is told to stop rather than the ''no pain no gain'' line I got. Swimming gave me many gifts of friendship, discipline, determination which I hope your daughter is able to experience, but I guess you really can have too much of a good thing. I miss swimming