My seven year old son has cerebral palsy. Along our journey, we have encountered a variety of methods and practices that have helped him get to where he is today. I learned quickly that my greatest resource in searching out alternative methods and treatment was always other parents. Here is our quick reference guide for any parent seeking something “outside the box”. But first I’ll give you a short background on CP and where my son “fits” in the picture.
According to the Centers for Disease Control, Cerebral Palsy is the most common motor disability among children in the U.S, affecting approximately 1 out of every 303 children. Essentially, CP is brain damage, often caused by lack of oxygen in utero or surrounding a child’s birth, or incidents in the first year of life (i.e. stroke, infection, severe jaundice, child abuse). The disability in those with CP ranges from mild to severe. Cerebral palsy is also classified by type (spastic, dyskinetic, ataxic, hypo- or hyper- tonic, athetoid, and others) and what parts of the body are affected (hemiplegia, quadriplegia).
My son is considered on the more severe end of the spectrum. He is non-verbal (does not talk) and non-ambulatory (does not walk). His CP is classified as spastic, dystonic quadriplegia. He is also very hypertonic, meaning his muscles are often very tense. He has very little control over his movement which makes any independent activity close to impossible, at this point. He also has cerebral visual impairment (which means his eyes work, but the connection between the eyes and the brain is damaged) and a seizure disorder. His gains in functional skills have been minimal.
We have done (and continue to do) all of the traditional therapies: OT, PT, Speech, feeding therapy, and vision therapy- which is not the focus of the following information. We have also tried numerous “methods” to see if anything would make a difference for our son. So far, there has not been a “magic bullet”- but often there is not. We are going through this experience with the attitude that no time has been wasted and each experience has brought us to the next. Our vision is for our son to live a full life, reaching his individual potential. With that said, here is our Top 5:
Anat Baniel Method. This is a movement learning method that focuses on the power of brain plasticity and the ability of the brain to form new connections through movement. This has been our “go-to” method since our son was a year old. We believe so strongly in this method that I went on to become a practitioner (although I currently only work with my son). I have seen miraculous things happen to children working with this community of people. During a lesson, the practitioner typically works on a low, massage-like table with the child. It is a very individualized method where the child’s movements take the lead. Often, we will have an intensive series of lessons with a practitioner- perhaps 6 lessons over 3 days. Then there will be time taken off to integrate the learning in the body. Often there are changes days after the lessons occur. This method is also helpful for all people, not just those with special needs. I have gained many benefits from doing this work myself, especially related to back problems from carrying my son.
Masgutova Method. This method is based on the work of Svetlana Masgutova, of Poland. She uses a series of exercises to appropriately integrate the child’s reflexes. The treatment is often done in a “camp” setting which consists of 8 days of therapy for 5 hours each day. During this time the practitioners teach the parents how to continue the work at home.
- Chiropractic. My son visits a chiropractor regularly. I feel these regular adjustments have kept my son relatively healthy and scoliosis free. His dystonic movements and postures, along with his increased tone, create a lot of discomfort in his body. We feel that regular adjustments help alleviate some of his discomfort. Also, each of the three chiropractors who have worked with my son have taken a special interest in his development and well-being. They are always making suggestions and searching out new ways to help him.
Hippotherapy/Therapeutic Horseback Riding. You may be wondering the difference between the two, simply Hippotherapy is done with a licensed physical therapist on a horse and the other is with an instructor trained in therapeutic riding. We have worked with three different groups and all have had their strengths. Working with a physical therapist for a very involved child like my son is preferred, but the cost and the limited access can make it difficult. One of the therapeutic riding places we worked with was certified and a non-profit- they were amazing. Extremely organized, very safe, very streamlined and very” in the box.” Our current riding therapy is also a non-profit, but very small and not certified by any larger organization. This allows for a lot more flexibility in what we do with my son. I was very happy with our previous program, but the new program allows my son to truly work on skills he needs to develop and they are not confined to the rules and regulations of a larger organization. Additionally, this is by far my son’s favorite activity.
SPML (Selective Percutaneous Myofacial Lengthening). I mention this only because many children with severe CP will eventually have some type of surgery to alleviate extremely tight tendons or to restructure hip joints. These surgeries are extremely invasive, painful and scary. When my son began having hip “issues” and our orthopedic surgeon wanted to do an adductor release surgery (essentially cutting the adductor muscles, putting my child in casts for 6-8 weeks with a bar between his legs), I figured it would only help to seek out alternatives. We found a doctor in New Jersey who does SPML. Essentially, the same idea of the typical adductor release, but they do not cut the leg open, instead the surgeon only makes small incisions for a scalpel to cut the fascia of the muscle. It is an outpatient surgery and my son had no casting at all. He was on pain medications for a week and the results were astounding. Where once he scissored his legs relentlessly, he now could keep them apart and even sit frog-legged! This allowed him to be able to bear weight on his legs and begin taking assisted steps. Also, there was no scar tissue to cause problems as would be in the typical surgery. The downside of this surgery was that we will probably have to repeat it at some point because the fascia could tighten again, it was basically to buy us some time to try to allow his hip joints to form correctly. Additionally, our insurance only paid for about a tenth of the surgery costs.
Other treatments we have tried, but decided not to continue:
- HANDLE Method
- Osteopathy- manipulation
- Bowen Therapy
- Brain Integration Technique
- Vision Therapy
Treatments we have investigated but chose not to invest at this time:
- Hyperbaric oxygen therapy
- Conductive Education
- Advanced Bio-mechanical Rehabilitation (ABR)
- Patterning/Institute for the Achievement of Human Potential
Treatments we are planning and/or considering:
- QRI (Quantum Reflex Integration)
- Family Hope Center
- Stem Cell therapy
- Companion/Therapy dog
Obviously, this is our path, our experience. What worked for us may not work for you, and vice versa. After researching each of the alternative treatments/therapies we chose to pursue we felt the benefits far outweighed the risks, even in cases where the success was only measured anecdotally. Some of the treatments/methods listed above will not be known by your doctors and therapists. I encourage you to do your own research, ask questions and if you feel the need, run it by the professionals working with your child. Do not be surprised if they do not encourage you to seek out other treatments, and at times will discourage you. Ultimately, you are the decision maker. I would love to hear comments/feedback on anything listed above, if you have specific questions, or if you have found something that has helped your child reach his/her potential. Like I said, other parents are my best allies.