Diagnosis
My daughter was diagnosed with cerebral palsy when she was 17-18 months old. Her exact diagnosis is Spastic Diplegia (Level II). She is able to walk and even run in a limited way. She tip-toes, has feet inversion, poor coordination/balance and knee hyper-extension.
Conventional Therapies
Since the diagnosis, we have gone through most conventional therapies commonly prescribed for cerebral palsy with spastic diplegia which included Occupational Therapy, Physical Therapy, all sorts of braces, serial casting, and Botox injections.
Conventional Therapy Results
Almost 4 years of therapy have come and gone. My daughter was showing some improvements, but the core symptoms such as spasticity, weakness and feet inversion were still there no matter what we've tried. Therapists and treating physicians tend to feel that this is the nature of the condition and accept it for what it is. I was of the opinion that we needed to take a more hands-on approach and start exploring other therapies that may produce better results. Below are some of the things that we've discovered in the process.
FES (Functional Electric Therapy) & NMES - Neuromuscular Electric Stimulation
If you haven't heard of the above terms and they seem scary to you, I'm not surprised. NONE of the therapists or doctors that my daughter has seen in the past 4 years have even mentioned this form of therapy for treatment of movement disorders in children with Cerebral Palsy. I knew nothing about this therapy and had to do quite a bit of reading before these terms and their real life application started to make sense to me. To jump ahead. I used one such electrical stimulation device on my daughter. After a few weeks of treatment, she run faster than she ever run before. She was also able to make long jumps forward and stay on her feet, which she could barely ever do before. Our friends (who didn't know about us applying this therapy) commented on how much faster she's running. If you're asking yourself why your therapists never mentioned or practiced this treatment, you're one of many asking the same question. The short answer goes back to what I said earlier. Many doctors and therapists tend to take a very conservative approach to physical therapy. If you ask them about Electrical Stimulation, I'm sure they'll know what you're talking about as they've all studied it in their schools and training classes, but sadly, large majority of therapists simply do not fully understand how to apply this form of treatment correctly so they chose not to even go there. For those interested in learning more about this, please read my blog post FES & NMES for Children with CP which is dedicated to application of Electric Stimulation on your own, at home. The blog post also explains differences between TENS, EMS, NMES and FES. All of these terms can be quite intimidating at first, but stick with it. It's not as complex as it sounds and you may be pleasantly surprised by the results.
Bioness
I cover Bioness (and other devices like it) more in depth in my post FES & NMES for Children with CP, but I wanted to highlight it in the main post. What is Bioness? Simply put, it's an electrical stimulation device that is placed just below the knee and uses bio feedback and electrical stimulation to lift up patient's toes as they walk. For someone like my daughter who has a poor dorsiflexion, this device can make a big difference in walking. Yet this is another example of a device that was never brought to our attention by any of our physical therapists or doctors. Why? Very common response is that devices like this were created for the "Foot Drop" condition, which is different from Cerebral Palsy. All of this is true, but the fact remains that this device or others like this can help your child walk better and possibly eliminate the need for braces. This alone is enough of a reason to at least try the device and evaluate its benefits. All it takes is a referral from your doctor to a physical therapy office that has the device.
Cannabis
I'm sure that most of you know what this is. We're talking about the use of medical Marijuana for children with Cerebral Palsy. For those who are new to this, we're not talking about getting children high. Marijuana plants contain two key compounds. One is THC (Tetrahydrocannabinol). This is what gets people high. Another is CBD (Cannabidiol). CBD acts as both a pain reliever and muscle relaxer but does not cause the euphoric effects associated with getting "high". CBD oil is commonly extracted from marijuana plants that have very low amounts of THC but are rich in CBD. So why CBD? Most therapies prescribed for Cerebral Palsy characterized by spasticity involve occupational and physical therapy, braces, serial casting and Botox injections. These treatments almost never include CBD or any other forms of medical marijuana. This is despite current studies showing that CBD can be used as a natural remedy to decrease muscle spasticity in children with Cerebral Palsy.There are also recent studies showing that Botox injections that are meant to reduce spasticity are actually irreversibly weakening calf muscles, which play such an important role in walking. In my post CBD Oil for a child with Cerebral Palsy I share our personal experience with CBD, different brands of CBD and how application of CBD oil therapy benefited my daughter.
Treadmill
Treadmill is a fairly common device at PT offices so it's not really an alternative treatment. I wanted to bring it up here because treadmill is commonly used in physical therapy offices. We wanted to take a more hands-on approach. My daughter needs a lot of gait training. Treadmill is a great device for that and we didn't want to be bound to a physical therapy office in order to have access to such an important part of her physical therapy. So the answer was to buy a treadmill for home use. None of the kids' treadmills that I found quite measured up. I wanted a treadmill that was motorized and had handles low enough for a kid to hold on to while walking. We ended up purchasing the treadmill below:
Merax Treadmill
This treadmill was highly rated in terms of performance and durability. It was easy to assemble, simple to use and had a lot of reviewers (adults) complaining that its handles were too low for them. In other words, it was a perfect treadmill for kids. Plus, at just a bit over $200, it was very affordable. We bought the treadmill and I started my daughter off on this treadmill with short 10 minute sessions for a few days always by her side, controlling and guiding the way she stepped. As we progressed, we increased the time on the treadmill to 20 minutes, then to 30 and 40 minutes. I was also progressively increasing the treadmill speed throughout each walking session. My daughter took well to the treadmill. It was was a good way for us to spend time together while engaging in exercise aimed specifically to improve her walking. In 2 -3 weeks of the treadmill training, she was showing significant improvements in her walking speed (on and off the treadmill). She also showed a good deal of reduction in her feet spasticity and improved dorsiflexion, which is a common effect of such physical exercise.
I can already hear physical therapists who may be reading this questioning how well I control my daughter's gait while she walks on the treadmill and how effective this training is without efficient control of her gait. All of these are good questions. I don't believe that having her walk on the treadmill in braces will do her much good. Braces restrict range of motion so their benefits are questionable at best. With guidance and repeated reminders, my daughter keeps her feet apart and is able to lift her toes. It is important to note that continued walking works well to further reduce spasticity making it even easier for her to lift her toes. Of course every case is different. More serious cases may very well require specialized forms of treadmill (with a harness, etc...) only available at PT offices.
There are other ways to help a patient improve feet placement and dorsiflexion while on a treadmill. This can include kinesio tape for better feet and knee support.
We're anxiously awaiting Bioness device (more on this in FES & NMES for Children with CP post). The device will allow my daughter to gain even better control of her gait while she is on the treadmill or doing her regular walking. Stay tuned for future updates.
Other tips and tricks
As mentioned in this blog, we had a love-hate relationship with braces. We understand the benefits but feel that braces limit their range of movement which has its own downsides. Bioness that I describe above may be one way to at least limit the use of braces. Over time, we have also used Compression Braces (wraps) to support my daughter's feet while working. Below is one such wrap that we used:
Faswin 2 Pack Nonslip Breathable Ankle Brace with Compression Wrap Support
This wasn't made for kids, but seemed like it would fit. It's not perfect but it did help my daughter to keep her toes higher while walking as well as everting her otherwise inverted feet.
NEO G Ankle Brace for Kids
This is a kid's version of the above. Same basic idea, to support the foot. We didn't use it because we bought the one above before running into this one. We'll probably try this next. It may work well together with Bioness.
Where we are now
At this time, my daughter's exercise routine consists of a treadmill 2-3 times a week, averaging around 30 minutes per session. We also do regular physical exercise at home 2-3 times a week, aimed at strengthening her legs and trunk (pushups, sit-ups, squats, crunches, leg raises, bridge, etc...). We do at least 3 sets of 10 repetitions for all exercises. We're seeing a good deal of improvement from this routine both in her strength and walking. We are combining this strength and endurance training with CBD Oil supplement (1ML twice a day) in order to keep her spasticity in check. Electrical Muscular Stimulation devices helped her improve her muscle tone. She is now able to do the exercises herself without the help of electrical stimulation, which was the goal of using EMS. We do not use EMS at this time because there is no critical need for it at this time, but would like to do more FES once we get correct device.
Lessons Learned
The main goal of this blog was to convey our personal experience with conventional therapies and how we were able to achieve even better results by combining conventional therapies with alternative therapies described above. I'll try to summarize our findings in what I call lessons learned:
- Physical and occupational therapies are important, but can be made significantly more effective when combined with electrical stimulation. Electrical Stimulation allows patients to target specific muscles that need to be strengthened and/or nerves that need to be triggered. This is something that is much more difficult to achieve using conventional physical exercises.
- FES - Functional Electric Stimulation can be combined with conventional physical exercises to promote neuromascular learning and "teach" the patient's brain to trigger correct muscles at the right time without using such devices.
- Spasticity is often one of the key issues that limits patient's mobility or even ability to take full advantage of physical and occupational therapy. Natural remedy such as CBD (Cannabidiol) can help to reduce spasticity, improve efficiency of physical exercises as well as mobility and quality of life.
- You don't have to be enslaved to braces. In my post FES & NMES for Children with CP , I describe electric stimulation devices such as Bioness, Walkaide, Odstock, XFT all of which are very light weight electric stimulation devices that can help patients lift their toes during walking. Devices like this may completely eliminate the need for braces and improve efficiency of conventional physical therapy.
- Physical Therapy is beneficial, but more often than not, physical therapists don't engage children enough or push them enough. Consequently, improvements are often marginal at best. It's on you as a parent to ensure that you exercise with your child at home, monitor their progress (or lack thereof) and make any and all adjustments necessary until you see results. Physical Therapy has to be results based. Do not accept statements such as "it takes time". If you're not seeing measurable results in 4-6 weeks of therapy, then it's not working and it's time to change the routine. If your physical therapist continues to use the same therapy without seeing results or measuring results, you need to change your physical therapist.
Be on the lookout for my new posts. We're in the process of getting Bioness for my daughter for every day use. I'll be sharing our experience with that. Good luck!
