Therapies for Cerebral Palsy: What We've Tried

Nick has always received traditional therapies which are common for individuals with cerebral palsy such as physical therapy (PT), Occupational therapy (OT), and speech therapy as needed. Nick started these therapies as an infant in the Early Intervention Program in our area. For the first two years of his life, our medical insurance would not cover his therapies because they said his condition (cerebral palsy) was a "chronic condition" and that Nick was "non-restorable". We received this letter when he was 6 months of age. When Nick was two years old, our insurance again started paying for private OT and PT, with a limited number of visits, and a few speech therapy visits. He continued to receive therapies from Early Intervention until he reached school age. He received these therapies in school in Elementary School. Starting in Jr. High and now in High School, we only have the OT and PT see Nick on an as needed basis to consult with Nick and his teachers about accommodations for his classes, etc. He still receives private therapy as needed, when he grows, but we do most of our therapy (exercises) now at home. Nick loved water therapy and we try to take him to the YMCA to use the therapy pool as much as we can. Nick has said the is the ONLY time when he is not in pain (when he's in the water!).

The goals of therapies for individuals with cerebral palsy can vary from person to person but what it comes down to is that therapies are key in helping an individual with CP to maximize their daily functioning, which can include talking, daily living skills, overall fine and gross motor skills. It's about "managing" the cerebral palsy. This is what we've learned over time. You can't "cure" it, there is no cure. You can't make it go away. You just make your daily functioning level the best it can be and manage these kinds of issues as they come up. (for health, pain control, quality of life, overall functioning!) This is our take on it anyhow.

For those that don't know, these therapies and early intervention is especially important, even crucial, during the first three years of life. So, while we appealed the insurance companies decision all the way up to the State Board of Insurance, our early intervention program kicked in and were life-savers! They would go to Nick's daycare center and work with the staff there weekly and video-tape the sessions so Greg and I could watch them later and know what to work on. (on the days I couldn't make it to the sessions on my lunch hour.)

Finally, we decided when Nick wanted to walk really badly, to try conductive education at a place we found in Canada. In the spring of 2008, I wrote about it for my friend Joni when she asked me to write about it for a group of interested parents. Here is what I wrote about that experience:

In the summer of 2002, we took our son, Nicholas, who was eight years old at the time to Ability Camp in Picton, Ontario, Canada for conductive education therapy for 6 weeks.
Nicholas has athetoid cerebral palsy (is quadriplegic, all four limbs of his body and tongue, etc. are affected) and a progressive hearing loss. Nick was using a walker (and still does and uses a wheelchair for longer distances, and now has a Segway as well), however, at the time, he had a goal (HIS goal) of wanting to walk independently. Nick has been receiving PT, OT, and speech therapy ongoing from our private therapists since he was three months old, and still receives therapy as needed privately and at school.
Nick’s PT felt he needed a “boost” of intensive therapy and he would be able to walk independently. She recognized that she did not have the time to see him that often, and we recognized that as part of our daily life with working, our home, our 2 year old daughter at the time, etc., we could not assist Nick with hours of intensive therapy either. We did some research and had heard of conductive education and found the Ability Camp in Canada. At that time, there were no places we could find close in the US that were as affordable and provided such intensive therapy, 6 hours a day, 5 days a week, for 5 weeks. My husband and I both took FMLA from our employers, made arrangements for our house and dogs, and our family of four went to Canada for 6 weeks. It is about a three-four hour drive past Toronto. We stayed at the camp, with 15 other families, in very small facilities. Our room was 8X10 for the four of us and all of our luggage and there was one kitchen and four bathrooms for all of the families. It was an adventure. The area is VERY rural, 45 minutes to the nearest town with stores and Wal-Mart, etc., and beautiful. We spent our weekends in Toronto or Belleville (the nearest “big” town) or at the beaches, which are very close to the camp. Mon.-Fri. we spent 6 hours a day helping Nick and the instructors with his therapy and we could “practice, play, etc.” with the other kids in the evenings. The program included daily sage baths for Nick’s legs (they say to relax his muscles), the place smelled like turkeys! It was one of the best summers of our lives together. Nick was able to walk independently after that (for shorter distances) and gained a lot of strength and skills.
It is our opinion that this was a great option and experience for Nick. It is also our opinion that this is no “magic” cure, as no therapy is. We feel this benefited Nick because of the hours and intensity of therapy he had. We feel if he could have received that same therapy here from his PT, we would have absolutely gotten the same results, but our healthcare system is not set up that way and the cost would be out of hand. For anyone, if they “work out” or exercise 6 hours a day, 5 days a week, you are going to see results. So, our feeling is, that is wasn’t “conductive education” that made this experience work so well for Nick, but rather the amount of therapy he received, which is why we did it. We feel many therapies would work just as well in this same intensity. We have found that there is no way to keep that up back at home. We have been faithful about doing daily stretches, etc., but as Nick has had many growth spurts, he is 14, going on 15, and grown tremendously, we regularly see regression and we know once he stops growing and we step up his therapy again, he’ll catch up again. We expect this to continue to happen until he stops growing (and the teenage years are the worst we’ve been told!).
If we could afford to do something like this again, we would. Nick continues his PT, OT, etc. as needed and we do a lot at home with him (stretches, etc.), which is really the key in our opinion (not “taking him” to therapy, but what you do on a daily basis at home) and this helps. Nick is having his first surgery on both legs in June. (we’ve done botox and casting several times with little results) We’ve been able to hold off until now, we think in part because of his therapy, but with his growth now, the doctors have said he will not be able to continue walking without the surgery. We personally believe that there is not “one thing” that works for everyone and families should do what they think is best for their child and for their own family.
So, our experience with conductive education was great for Nick because of the reasons we noted. Below, I have attached some information from the Ability Camp website about cerebral palsy and conductive education. The phone number (you can get a free DVD) and website are listed.
Amy Hyndman amyhyndman@buckeye-express.com 419-872-7522
Info. From Ability Camp's web site:
Ability Camp
At Ability Camp we have treated thousands of children with Cerebral Palsy over the last 10 years. The parents that come to us have tried every conceivable treatment for Cerebral Palsy imaginable and consistently tell us we have the most effective program available anywhere in the world. We offer Conductive Education combined with Hyperbaric Oxygen Therapy. We are one of the only places to offer both under one roof.
What is Conductive Education?
Conductive Education started in Hungary 60 years ago. Conductive Education helps children and adults with motor disorders learn to overcome problems of movement resulting from disease or damage to the central nervous system. It approaches motor disorders as a problem of learning or relearning - a problem that will respond to the appropriate teaching. If they can move and they can learn, they can learn to move. By repeating tasks and integrating intentional movement with learning, the brain creates alternate pathways to send messages to muscle groups creating the desired movements.
What does Hyperbaric Oxygen Therapy do?
At normal air pressure you are absorbing about as much oxygen as you can. Even if you were fed pure oxygen at this pressure you couldn't absorb more oxygen than you would get from normal air. However if the pressure was increased to about twice the pressure difference you would get on an airplane, you could absorb far more oxygen. This extra oxygen is said to increase the level of activity around the brain injury.
Are Conductive Education and Hyperbaric Oxygen Therapy more effective together?
If Conductive Education is trying to create alternate pathways in the brain and if Hyperbaric Oxygen Therapy is stimulating those areas, then it might make it easier to create those new pathways. The results aren't just theory, we have seen first hand over and over again. While the results can be good from either one, they are much better together.
How long does it take?
Our children's Conductive Education program is 5 weeks long. Children from 1 to 6 years old spend 5 hours a day, 5 days a week in Conductive education. Children from 7 to 14 years old spend 6 hours a day 5 days a week on Conductive Education. The 40 Hyperbaric sessions are one a day on weekdays and 2 a day on weekends, spread out over the same 5 weeks.
What kind of results can I expect from this?
If you are looking for some quick fix, then you are going to be very disappointed. While Hyperbaric Oxygen Therapy itself does not demand a lot of effort, what gains you get are less likely to become permanent if it is not accompanied by effort to make use of the improvements gained. Conductive Education is the ideal way to cement those gains and make them permanent.
With Conductive Education we can teach your children how and what to do, to overcome problems of movement. We will custom tailor a program according to their individual needs and abilities. We will challenge them to do more than you ever thought was possible and they are going to love it. In our group setting they will be working alongside children their own age, with similar exercises and the same sort of challenges to overcome. Amidst the cheers and admiration of the friends they have made, they will put forth far more effort than they would in one on one therapy. They are going to see the results and gain a new sense of pride and accomplishment.
If you would be thrilled with incremental gains in many different areas, then we can help you with that. For instance; if they are using a walker that supports their weight the next step could be a walker that doesn't support their weight. If they are using a walker that doesn't support their weight, the next step would be canes with the 3 little legs sticking out. After that comes straight canes, then no canes. It is common for children to accomplish one of those steps in our 5 week program.
Don't get the wrong impression; we work on far more than just their gross motor skills. Our program includes feeding themselves, brushing their teeth, potty training, speech, social skills and many other things they need to start on the road to independence.
Even an incremental gain can make a huge difference in your child's life and make your life much easier too. If you feel that your child could be doing far better than they are now, but need help to make that happen, then you have come to the right place.
For more information and to receive a Free DVD call Kevin at 1-800-442-6992 or email to kevin@abilitycamp.com

One last thing. We've also tried horseback riding therapy (called hippotherapy) for Nick which was WONDERFUL. The only reason we stopped is that the therapy provider we used had funding problems and closed for awhile. When they re-opened, Nick was into other things at the time and he decided not to go back for now, but we may do this again in the future. This was great for balance and stretching of muscles, and much more. For more info. , check out www.americanhippotherapyassociation.org.

There are even more therapies out there now for cerebral palsy. My thoughts are, don't judge families if they try something alternative or different. Each family and each individual has to do what is right for them. Sometimes it is a process of "trial and error" but it is always to benefit the person with CP. What works for one family or individual, may not work for another. I believe it's important to know what is available and make informed decisions based on what is best for your child (or family member with CP) AND your family at the same time.

This information is based on our experiences with Nick. Of course we'd love to hear from others with any other helpful information to share.

Blessings:)
Amy