Alternative Therapies? - Cerebral Palsy Message Board

chriley58 · 08-23-2005, 11:50 AM

Hi I am new here. I have a 3 year old daughter, who has not yet been officially diagnosed with CP, but we are doing the legwork and it looks like that's going to be one of her diagnoses. She already has severe bilateral hip dysplasia, which can go along with CP we are finding out now. She has had two hip surgeries, with the second one not working due to her muscle tone issues. She has had a full brain and spinal MRI, all clear. She has high muscle tone throughout her body, but predominant in her lower body, tight hamstrings/heelcords, gait issues, foot deformity. Unfortunately, it's been hard to get official diagnosis on her since her neuro issues are coinciding with hip issues. She receives weekly PT and has since she was 17 months old, she was diagnosed with hip dysplasia at 18 months old. She had hip surgery at 18 and 25 months. She can now walk independently but has some pain issues. Which leads me to my questions. What kind of alternative therapies, if any, have you found useful? We are currently taking her to a healing arts practitioner - who does myofascial release, craniosacral and energy work, she sees a chiropractor as well. We are also looking into an osteopath who deals with tone issues. If you have tried any of these therapies, have you noticed a difference afterwards? I can honestly say that after her first visit to the chiro there was a marked difference in her posture and radiational knee pain. We have seen some phenomonal results with the myofascial work as well. Right now we are hoping to help with her muscle tone so that her second hip surgery doesn't end up a total failure, there is still time for it to re seat itself if we can get her a bit looser. Also, is there anyone that is dealing with both CP and hip dysplasia as well, I would love to hear about your experiences.

Thank you in advance, Heather

firehorse · 08-24-2005, 02:31 PM

I have not heard good reports about chiro and CP. High tone can cause injuries during adjustments, from what I've heard, but this is just hearsay. In general I would be very careful with chiropractic. I'm not against alternative therapies - I saw a chiro myself regularly for over two years as well as an accupunturist. The chiro did BEST which is a form of cranial-sacral work, and got good results with my lower back pain due to scoliosis. But after tremendous initial results I hit a plateau. My chiro wanting me to continue with weekly visits but I wasn't seeing any more improvement. I finally quit and continued my own maintainence with taichi and massage and have never regressed. IMO chiro's want you to keep coming, and it's not always warranted.

Accupunture does not do much for CP in children, although it may help with pain later in adulthood. I have been told this by several very experienced accupunturists.

My 5 yr old nephew has mixed tone with spastic quadrants (all four limbs affected) and we've seen the greatest improvement in motor control, strength and flexibility with Conductive Education. Just google Conductive Ed for more info and for therapist in your area. In brief, Conductive Ed is about the child learning motor skills so they can adapt to their environment, as opposed to adapting the environment to the child via splints and other aids. Conductive Ed requires daily stretching and ideally therapy would be 4-5 times a week for a couple hours each time. My nephew stretches at home, plus goes to intensive CE camp in the summer and once a week the rest of the time, in addition to 3-4 times a week of regular PT/OT and Speech (he is more involved than your daughter, from the sound of it). He does not walk independently yet, but he is much more capable since starting CE.

I was studying to be a PT before I decided I needed some distance from CP in my life and when into molecular biology research (ALS and Spinal Motor Atrophy) and in general what all PTs told me was the more hands on work with the child, the better.

Good luck.

Newtocp · 08-25-2005, 11:14 AM

Heather,

I would agree with firehorse, Whatever you do it probably need to be intensive. Conductive education is great if they aren't walking. suit therapy is another alternative that people seem to really like. THey both are usually done in intensive 'camp' situations so for 3 weeks they work 5 to 6 hours five to six days a week. It seems like so much for little kids but they do seem to have the best results out there.

Steph