I get many emails with mothers asking me about this therapy or that therapy, and my experiences with them. I figured I’d write a blog post with summaries of everything we’ve tired and my opinion of the therapies. What’s difficult is that the same therapy may have vastly different results in 2 similar childrens – it’s impossible to predict how each therapy will affect each child. So this is just what we’ve tried and my opinion based on Nathan:
Cuevas Medek Exercises
Cuevas Medek Exercises (CME) is by far the most effective therapy I have found. So far, it’s the ONLY one where I have seen visible, lasting results in Nathan. The results have been subtle but have been distinct and clear on many levels. To summarize CME:
One of the CME’s assumptions is that in a gravitational environment, movement and manipulative skills require postural control or the ability to pull up against gravity and to stabilize the body in space. Gravity is considered the main stimulus that triggers the neuromuscular system to react.
Basically, in Cuevas Medek exercises, children are put in situations where they react with anti-gravity and equilibrium responses so the brain creates new maps for postural and movement control, leading to functional gains like sitting, standing and walking. You can see many videos of Nathan doing CME in my YouTube channel. I have also written many posts about CME on this blog in the CME category.
Why do I love CME and consider it the most effective therapy? Because it WORKS! Additionally, it makes the most sense to me. It is working at a neural level, at the source of the damage – the brain itself. Through the exercises, the therapist conditions the brain and establishes neural pathways that the child has access to permanently. The exercises work at many different levels at once – one exercise can work on head control, standing, and balance all at once. Most importantly, I have seen and heard of and talked to many families who’ve children have done CME and have seen miraculous results. The story is always the same – they tried everything, spent so many hours doing traditional therapies and other alternative therapies with no results, then they do CME and their child makes incredible progress in a short period of time. Nathan’s progress has been slow but I am happy with his gains. He has better head and trunk control, is starting to move more on his back and belly, is starting to roll, is using his hands more effectively, and has more balance. So far they’ve all been milistones, but I believe that given enough time Nathan will continue to make slow and steady progress. It’s the only therapy where I feel that even though Nathan is severely brain injured, he has the potential to learn skills that weren’t available to his brain before – CME CREATES brain maps for the functions that it stimulates. So keep an eye on this channel to see if he continues to improve!
Here are a couple of videos with examples of CME exercises:
Advanced Biomechanical Rehabilitation
ABR (advanced biomechanical rehabilitation) is another one that’s quite good. This one addresses structural problems which in turn lead to functional gains. Here’s a post I wrote a while ago talking about ABR:
Basically, the whole premise of ABR is to apply kinetic energy to the body to stimulate strengthening of smooth muscles. Loosely defined, smooth muscles are the connective tissue and other structures around muscles. Mr. Bylum calls them the cheapest structures of the body, the ones that require the least energy to run, strengthen and maintain. By strengthening these smooth muscles, we free up regular muscles to perform dynamic movements and other tasks, which require more energy and motor planning and are a lot more “expensive” to run. Brain injured children have such weak structures and smooth muscles that they tax muscles too much and the muscles cannot perform their tasks properly. By using “constructions” such as towels and other props and aids, specific exercises are used to apply energy to the smooth muscles. Props are used to bypass the protective structures of the body and get deep into the internal and connective tissues and organs. By improving the structure of the body, children are free to gain improved functions – such as gaining chest volume for improved respiration and lung health as well as trunk control, etc.
Here’s an example of the chest ABR exercise:
I do believe ABR is very effective and works for almost every child. What is excellent about ABR is that it helps on a multitude of levels. It helps improve their respiratory and other physical health problems such as reflux and constipation. It also helps with structural problems from head to toes – collapsed chest, misshapen skull, tight and fisted hands, tight muscles, etc. I have heard of children who go from having no use of their hands or arms to having great control over them, as well as children who have made incredible functional gains.
The only problem I have with ABR is the investment in time. For ABR to work, it is recommended for families to commit to 3 hours every single day. If you don’t, it delays any results gained. For example, if you do 3 hours / day you’re expected to see X results in 6 months. If you do only 1.5 hours, it will take 1 year to see the first set of results. Then you have to wait 1 year to get the 2nd set of exercises, because you’re supposed to have “graduated” from 1 set of exercises before moving on to the next set. For a child as involved as Nathan and with his personality, I struggle terribly to do that many hours of passive exercises. Nathan’s always been so stimulated that he doesn’t do “still” quite so well, he can’t just sit for 3 hours while we do these exercises on him, the only way to get him to stay still and happy is to watch TV, but 3 hours of TV / day is more damaging to him than the benefits of ABR, because he becomes very addicted and then loses interest in other things like playing, therapy, interacting with others, eating, etc. We have been doing 1 hour a day on his chest and hoping to see some results in that area over an extended period of time. If you have the time, energy and inclination, and your child can tolerate it, I think this is a good one and my 2nd choice after CME.
Here’s a description of Hyperbaric Oxygen Therapy:
You do HBOT to open new passageways for the delivery of oxygen to damaged neurons or to neurons which are not getting proper deliver of red blood cells meaning the neurons are not getting the
proper mmHemiglobin delivery. By raising the saturation levels and repeating treatments, capillary growth begins so the needed area can constantly receive the needed oxygen to once again begin operating
properly. This may include the development of new neurons and/or the revival of existing neurons in the brain. Either way, this is what you want if you are to see improvement in the neurological conditions.
HBOT is the only way to achieve this. HBOT is the method used to create a saturation percentage level sufficient to cause this to happen. It just happen so the delivery of oxygen will be on a permanent basis.
We have done mild hbot (HBOT in a personal chamber) and I’m not impressed with the results. I think HBOT in a hard chamber may be more effective, and we’ll probably try this in the near future.
Here’s Nathan in his chamber:
Let me explain something. Typical HBOT is done in a “hard chamber” where the pressure ranges from 1.5 ATA to 2.7 ATA. They will then use a mask or flood the chamber with oxygen, at varying levels from 70% to 100%. It is believed that for neurological conditions, it is important to have 100% oxygen with at least 1.5 ATA pressure. Soft chambers typically only go up to 1.3 ATA and they are not authorized for use with oxygen. Some people use oxygen concentrators with their chambers but it’s almost impossible to get above 50% oxygen in a soft chamber, and quite dangerous to have that much oxygen in a flammable environment.
The difference between the pressure and the levels of oxygenation in hard vs soft chambers makes it so that hard chambers may be more effective, especially for someone as brain injured as Nathan. Kids with autism seem to do great in mild chambers, but since Nathan’s damage is so profound, I think he needs hard chamber diving. The increased oxygen and pressure in the hard chamber has “deeper” penetration in the brain to increase oxygenation to dormant neurons, which is the purpose of HBOT. Also, we’ve only done 40 dives in Nathan’s soft chamber, while the recommended amount for kids with serious brain injuries is 200 dives. So I don’t really recommend mild HBOT, but can’t give an opinion about hard HBOT because we haven’t tried it, but theoretically, hard HBOT should be beneficial.
Stem Cell Therapy
Stem Cell Therapy is a treatment whereby stem cells are injected into a patient in order to create growth of new cells where cells are injured. There are various kinds of stem cells which are delivered via different methods. Nathan received embryonic stem cells given through IV and through injections in his thighs.
We have done 3 stem cell treatments thus far. Nathan had excellent but subtle results from the stem cells. What is great about the stem cells is that the gains for Nathan are FREE – he doesn’t have to work so hard for improvements, which is wonderful. I think stem cells helped Nathan make cognitive improvements, and gave him a whole lot of awareness and subtle changes, such as improved mouth and tongue control, better vocalizations, and improved receptive language. The only doubt I have is the cost of stem cells, as it’s quite high. I wonder if I’d invested that money in other therapies, if Nathan might’ve made more substantial progress. For example, one stem cell treatment could’ve paid for a year of G-therapy, 80 hard hbot dives, and 1 year of CME with 1 session / day. So although I AM happy with the results from the stem cells and Nathan DID make improvements, from the point of view of straight ROI, I am not sure it was worth it. But perhaps if he hadn’t had stem cells he wouldn’t be where he is today, since the cognitive gains have helped him to make other advances, as cognition is essential in all areas of life. Would I do it all over again? Probably yes
Institutes for the Achievement of Human Potential
Here’s a bit of information on this program:
The Institute, having spent 30 years working with brain-injured children, believes that it is possible to improve a child’s performance, despite his or her often severe brain injury. As the brain itself, that most complex of all human organs, is never fully utilised in any human being, it is often possible to stimulate dormant cells to create or re-create function. Based on the Doman-Delacato theories and with some new inclusions, the Australian Institute has created a therapy to encourage brain development, increasing the frequency, the intensity and duration of stimuli through the five senses: sight, hearing, touch, taste and smell. Every child who follows the program is carefully assessed on his or her ability to see, hear, feel, move, communicate and use his or her hands, compared with a normal child of the same age. Wherever an absence of function is discovered, or the child has not reached the level of skills of his or her peer group, special techniques are included in the program to create or strengthen this ability. As every child is different, every program has to be tailored individually, and the various techniques differ from one child to another.”
Source: AIAHP website
With Nathan, we tried modified versions of the IAHP program (Institutes for the Achievement of Human Potential). We worked with REACH Institute and with the Australian Institute for the Achievement of Human Potential. We LOVED the teams we worked with and found them to be kind and knowledgeable. I think this program has some wonderful elements, particularly relating to their sensory and intellectual stimulation programs. I have heard of kids that go through this program who have cognitive visual impairment, and learn to see. I have also heard of kids who learn to read very very early and who develop incredible intelligence thanks to this program.
Here’s an example of Nathan’s program:
However, I wasn’t too impressed with the physical part of the program for Nathan. Let me explain why. The physical part of the program requires activities such as patterning, floor time, going down an incline plane (like a modified slide), and other developmental patterning exercises. I believe this can work for someone who has milder brain damage. But for someone like Nathan, who has NO anti-gravity or movement response, I think this was ineffective. The problem is we didn’t do it long enough for me to give a concrete answer about its efficacy. My gut as Nathan’s mommy was that no matter how many hours of the day I left him on his belly, he wasn’t going to start crawling because something in his brain is missing to tell him to crawl. The patterning is meant to teach these movements, but there were a couple of problems with patterning: 1. I heard of many kids for whom it just didn’t work, and 2. I heard from the ABR people that it had a very negative impact on the physical structure of their body. So I didn’t want to spend months or years patterning Nathan hoping for a response only to cause him structural problems. But the sensory and intellectual programs are fantastic. The nutritional program was also okay, not excellent or thorough enough, but okay. They also have a masking element which I am not really sure about, I didn’t try it enough to form an opinion. Here’s a video of Nathan doing a session of the program that REACH institute gave him. If I had time and energy, I would probably do a little bit of the sensory stuff and complement it with CME and ABR, but so far, our days are already pretty full! Additionally, I’ve been reading about the Waldorf educational model and they discourage introducing intellectual stimulation until the kids are a little bit older, as they believe the early years are for sensory exploration…so I wouldn’t add in the intellectual program until Nathan is at least 5 years old.
About the suit:
The Suit, called the NeuroSuit, actually frames the body providing support and resistance simultaneously. It improves and changes proprioception (pressure from the joints, ligaments, muscles), reduce a patient’s undesired reflexes, facilitates proper movement and provides additional weight bearing distributed strategically throughout the body. This additional weight bearing provides strong feedback to the brain which helps create new improved patterns of movement such as when walking while the body is maintaining a more upright, correct posture.
I don’t have a video or pictures that are just of Nathan doing suit therapy, but you can see shots, amidst other therapies, in this video:
I thought was quite effective and Owen believes we saw the most clear, marked improvements after the shortest period of time with this therapy. My only issue with this therapy is sustainability. The problem we had is that he lost the gains a few weeks after he stopped the program. Suit therapy is so intense (4 hours a day) that you can’t continue it indefinitely, like you can with CME. So the reason I didn’t pursue suit therapy further was because I didn’t think it was sustainable since we couldn’t do 4 hours of therapy every day, every month, every year. Their bodies need to rest and assimilate what they learned during the intensive. And once again, because Nathan is so severe, the “rest” period robbed him of his gains so we would’ve been stuck in a loop.
For children who are less severe and “close” to reaching a developmental state, then suit therapy could help achieve that level and hopefully maintain it. For example, I met a little boy who learned how to walk during a suit therapy intensive. Once he was walking, of course he didn’t lose the ability to walk after the intensive finished. But for Nathan, since his gains were much more subtle and mostly on a muscular level, he wasn’t able to maintain them. I felt that Nathan needed something that we could work on and sustain day after day after day, which CME proved to be the one. It’s intense but in short bursts therefore it’s a therapy that can be done day after day after day, without fatigue or assimilation problems.
Anat Baniel Method
Here’s a post where I talked a little bit about Anat Baniels theory. To summarize, by tiny movements like the ones you saw in the video, she strives to create associations in a child’s brain so that with these brain maps, the child can learn how to move on his own.
We did an Anat Baniel Method intensive and I didn’t see any results from this program. They work on a very subtle level but unfortunately, once again because of Nathan’s degree of injury, I didn’t see any gains. It’s very possible and likely that to see improvements with this program it requires a lot more time, and 10 sessions just wasn’t enough to see anything. But my intuition told me that unless we could see an ABM therapist every single day for a very long time, Nathan’s gains would be too slow if at all. And since there wasn’t an ABM therapist in LA it just wasn’t viable. Again, I have heard miraculous stories of kids working with ABM therapists but unfortunately Nathan wasn’t one of those. It’s hard to describe how it works, so let me show you a video of one session Nathan had:
On a different level, there’s G-therapy. It’s not a physical therapy, it’s a nutritional therapy, but in my opinion, it is very effective. Here’s a brief description of what G-therapy is:
According to Dr. Oswal, “G-Therapy medication was developed over 25 years through research in Ayurveda and Homeopathy and when taken stimulates neurotransmitters and acts as a nerve growth factor. The body salts bring about the necessary changes in neurotransmission while the herbal extracts act as a catalyst”.
You can read more about it on this post that I did regarding G-therapy. I’ve done experiments with Nathan where I stop giving it to him, then resume, and compare how he performs in therapy and his health as well as his energy levels, and this has shown me without a doubt G-therapy’s effectiveness. When he’s on G-therapy, he is more aware, has more energy, is less hypertonic, and has more interest in trying new things and learning. I think it helps him with his therapy plus works on its own on a cognitive level. I believe G-therapy is an underlying foundation that supports growth and development in all other areas. In and of its own, I think it would work for cognition. But for kids like Nathan who are delayed in so many areas, I don’t think G therapy alone would give Nathan substantial gains.
What is the Biomedical Protocol? Here’s some info from the Generation Rescue site:
Typical physical manifestations of children with neurological disorders may include food allergies and eczema, general gastrointestinal distress, constipation and diarrhea, yeast overgrowth, immune system disregulation, and sleep disturbances. Typically, proper testing would also reveal high levels of environmental toxins relative to neurotypical children. Biomedical intervention for NDs is based on the belief that the symptoms of neurological disorders are a product of the physical issues the child is experiencing and that addressing the physical issues will lead to an improvement in those psychological symptoms (such as delayed speech, lack of eye contact, impaired or non-present social skills, shyness, delayed gross or fine motor skills, sensory integration issues (sound and touch sensitivity, etc.). The four most important things you can do to help heal your child are:
1. Bring the toxin load down
2. Help the gut heal
3. Get the nutrients up
4. Get the metals and other toxins out
I have talked a lot about nutrition lately so I won’t say too much about it, but in a nutshell, it’s about learning what are the child’s IgG reactions and eliminating those foods totally from their diets. Additionally, it deals with detoxing them from things like heavy metals and viruses, fungus, or bacteria that are attacking their bodies constantly and leading to digestive issues which have an impact on the brain and central nervous system. Additionally, kids are given healthy, natural foods that lead to improved brain function. Finally, they are given healthy supplements like calcium and magnesium, B vitamins, omega and fish oils, and other natural supplements which the body needs to function properly. I think this is ESSENTIAL and possibly one of the most, if not THE MOST, important interventions. The reason is that physical therapy or other therapies may not be having much of an effect on a malnourished, starving brain. To function properly the brain needs certain neuronutrients and neurotransmitters, and if these are not present, the brain cannot create new synaptic connections. So your child may do therapy 3 times a day but the brain doesn’t have enough serotonin to facilitate dendridic growth, therefore the brain cannot assimilate the changes. Additionally, because they are not developing typically and may have structural and/or muscle tone issues, they are liable to various health issues which wears their bodies down. How much progress can a child make who is sick every month? I believe having a strong immune system and proper absorption of nutrients helps them assimilate gains made by all other interventions and supports their development in so many ways.
These are all of the established therapies geared for kids with neurological problems that we have tried. But we have done lots of other stuff that I haven’t even mentioned here: Acupuncture, Chinese herbs, chiropractic, craniosacral, Osteopathy, Tomatis, reiki, biomagnetism, and other energy work. I believe these have all been beneficial, but I don’t want to talk about them here as they are not specific to kids with brain injuries.
Please feel free to contribute any information or opinions you have about any of these therapies or others you have tried! It would be great to have a comprehensive post that other parents can refer to when doing their research.