When it comes to therapies, equipment, and procedures for the treatment of cerebral palsy, the list can be overwhelming. Especially in the internet age when you can explore so many different options tried by many other families fighting a similar battle. When you chat with one or two families that have found success with a new method, you go for it.
We, ourselves, have done traditional occupational therapy, physical therapy, and speech. We also have done series of hippotherapy, treadmill training, and aquatic therapy based upon the traditional physical therapy premise. Roa also participates in music therapy guided by speech and occupational therapists. Medically, we do Botox and phenol injections and support sleep with medication. Yet in the spirit of “anything that might help”, we have gone the nontraditional methods of alternatives including hyperbaric oxygen therapy, Craniosacral Therapy, Conductive Education, Anat Baniel Method, and the Masgutova Method.
There are so many benefits to both traditional and alternative therapies. Similar to the world of diets and weight loss, the success stories are easy to trap you. When you explore the benefits of a certain therapy, you read about a family or two that found the true MIRACLE in treating cerebral palsy through one of these outstanding methods. We have fallen into that dream world of quick fixes. Doesn’t everyone? But through our five years in CP Land, we have learned to just accept the “little earthquakes”. That is what I lovingly refer to as these changes in body control, tactile recognition, and movement. These things that move us towards the long-awaited milestones we see in Roa after attempting new therapeutic techniques.
That all being said, our personal experiences that have lead to gains in development have come from a combination of many therapies. We see many benefits of the traditional modes of standers, gait trainers, stretching programs, and AFOs. Oral motor techniques provided by Occupational therapy and speech therapy have been absolutely essential in helping Roa develop some simple speech and have greatly improved his feeding skills. Swimming and horseback riding have resulted in amazing changes in head control and trunk strengthening.
In the world of alternative therapies, the gamble is higher with each attempt. These methods are usually not covered by insurance and can prove to be costly. Yet, small changes result in a beacon of hope with each attempt.
Sessions on the Craniosacral Therapy table gave us our very first glimpse of Roa’s outstretched arms at 15 months of age. Those little arms usually held tight, bent, and fisted against his side, reached up to our face! He also had a few lengthy naps after these CST sessions. Sleep has always been a battle. The calming, gentle, relaxing method of Craniosacral was such a welcoming technique to add to our everyday life, that I took the time to become a Craniosacral therapist myself!
Time in the HBOT chamber resulted in more vocalizations from Roa. He also allowed his arms to bear weight without complaint. The chamber itself was not such a joy. One hour in the pressurized steel tube left Roa in tears and momma claustrophobic! However, we battled through for 40 dives.
We have found that the structured, repetitive motor patterning program of Conductive Education also lead to control and muscle strengthening. Roa’s posture in assisted seating and walking changed for the better after years of Conductive Education. CE gave us, as a family, more of an independence-based look at Roa’s everyday routine. Roa attended CE sessions two days a week for 2 Ã‚Â½ years. We have learned to lead a more “conductive” life based on our experiences.
The Anat Baniel Method was one of great trial, joy, and anticipation of change. We have worked with two different practitioners and Roa cried and fussed with both, making the stress-level rise in everyone involved. Yet the “treat the brain and not the muscle” approach paired with the gentle, mysterious stimulation of certain areas of the body was so intriguing. We loved how tall Roa sat in his wheelchair, not even using his support vest. He also worked to pull up to the couch when placed in a kneeling position. However, the stressful crying, out of pocket cost, and the overall “mystery” of the technique itself had us questioning if it was worth it.
Which leads us to the little known, Masgutova Method. This past month, we attended the The Masgutova Neurosensorimotor Reflex Integration Camp (MNRI) in Minnesota. This method is fairly new to the United States and is based on the research of Dr. Svetlana Masgutova. Many Occupational Therapists are beginning to take courses in the MNRI area. This is exciting as insurance can help with the cost.
What is this new method?
Per their website (http://masgutovamethod.com/),
“Fundamental to the MNRI Method is the understanding that automatic primary motor reflex patterns do not disappear, they integrate. While most people in the general health and wellness community are quite familiar with primary motor reflex patterns, they generally view the patterns as developmental milestones. In the course of working with a patient, if primary motor reflex patterns are found active beyond the expected or typical developmental time period, the presence of the pattern is viewed as an indication that underlying developmental or neurological issues may exist. Within the framework of the MNRI Method, primary motor reflex patterns play a much larger role. First, it is important to understand that reflexes do not function in complete isolation of one another. Primary motor reflex patterns, in particular, play a subordinate role in the maturation of more complex motor reflex schemes (i.e., rolling over, sitting up, crawling, etc.) Once a primary reflex pattern fully matures during the typical developmental period, it integrates to serve this subordinate role. A dysfunctional pattern results, either because it did not mature and integrate in the first place, or because it has re-surfaced at some point after integration. In other words, a dysfunctional primary reflex pattern is not simply an indicator of potential neurological dysfunction, but actually helps to identify where underlying neurosensorimotor dysfunction exists in the body. The MNRI Method isolates reflex dysfunction, engages restorative techniques targeting underlying neurosensorimotor dysfunction, and works toward facilitating the integration process, resulting in improvements and sometimes even complete recovery of general function.”
Once again, a brain-based approach to the treatment of symptoms was so welcoming.
With our 5-day camp, we have gained so very much and MNRI has become the focus of our life in CP Land. Roa struggles with many primitive reflexive patterns. They are correctly firing reflexes (which is good), yet they are not integrating. Thus, Roa has difficulty rolling over, reaching toys in midline, sitting, getting hands to mouth for eating, etc…. Since the camp, Roa has begun to flip over to his belly from his back. This rolling pattern is huge in our life! Especially his improved ability in arm-righting. He remains on his tummy to lay and watch TV or reach out to toys. He is just more solid in his trunk and maintains tummy time play for longer with head control. He has also opened, grabbed and gotten food off the plate and into his mouth with minimal assistance. WOW! Great things happening with MNRI!
Our home life has changed as we are embark on an individualized program designed by Dr. Svetlana Masgutova, herself. For about 3 1/2- 5 hours per day (spread out from wake to sleep), we work on reflex exercises. The fact that we were taught the techniques ourselves was so family-friendly and empowering. Roa is accepting them so well! We have taken a break from other therapies so that we can focus on this. We feel that strongly about the progress we are seeing and the peaceful, body-alerting response we are getting from Roa.
It is very encouraging and gives us such great hope that Roa can battle through the brain injury that affects his every move. Thank you Dr. Masgutova and your team for the eye-opening experience we needed so much!
That all being said, each one of us special needs families undertake so many decisions while balancing professional opinions, therapeutic approaches, funds to pay for the high prices of success, and the added stress when so much is unknown. We found our current mode that works for us and gives us hope for Roa’s future. However, we all must make our own journey through the maze of theories to find what works best for you and your child.