Tuesday, April 19, 2011

Malachi's many cerebral palsy treatments

One of the things I hate about conventional doctors is this: They seem to think that research is one-way. They come up with some theory, get 100 people together and try it out. That's wonderful, but what they don't do much of is get 100 people together without a theory and observe who is doing better and why or — God forbid — talk to them about what they think is helping.

It drives me crazy to hear stories from people — including our medical folks — about kids who have brain damage yet are unaffected, or kids who "spontaneously" get better. Who are these people and why isn't someone doing a detailed survey of their lives and what could have caused their brains to repair themselves?

So, it's up to us, those who take care of people with cerebral palsy and those with cerebral palsy, to share amongst ourselves what we're doing and what we think is working.

To that end, I've compiled this list of treatments Malachi's crazy mom has made him endure already in his short life. Seeing it all written out here, it seems like we've done a lot, but I often thought in the beginning: "We're not doing anything!" It felt like it took forever for treatments to fall into place, and I still wish we had gotten started with some of them — CranioSacral therapy and homeopathy — sooner.

I have to add a disclaimer that we have no idea what if any of these things are working. I feel like something is working, though, because I think Malachi is doing well and he is progressing every day — albeit at a much slower pace than his brother. Perhaps they are all working together in concert, or perhaps one treatment is carrying the weight of the others. Or maybe he would be just the same if we'd done nothing. Could be. But, as someone told me at the beginning of this journey, Malachi's problem is complicated and thus requires a complicated solution. What follows is our complicated solution.

You can often find me stretching Malachi's legs or doing other bodywork on him. As you can see from this picture, he finds it easier to get his hands in his mouth when his body is folded as it helps to break up his strong extensor tone.
© Jessie Kirk Photography

Physical Therapy
We have two physical therapists, both of whom we are really happy with, though, to be perfectly honest, it took a few sessions to warm up to them.
The first is through the county's Early Intervention program. She comes out about once a week and gives us activities and equipment. She also turned me on to Qigong massage, which I personally haven't gotten to work but she can do it well and I've heard good stories from other parents.
Our other PT is through Doernbecher Children's Hospital. He is incredibly knowledgeable and really knows how to make Malachi feel comfortable, although we often have to push to get him to describe to us what's going on.
This leads me back to a previous recommendation I've made on this blog, which is to read Teaching Motor Skills to Children with Cerebral Palsy, so that you can incorporate physical therapy into your daily life and have the knowledge to even know what questions to ask.

CranioSacral Therapy
We have found a wonderful CranioSacral therapist and chiropractor in Korin Rasmussen. She has a lot of experience with babies and genuinely cares about her clients. CranioSacral therapy works through minor adjustments to the bones of the skull in an effort to improve the flow of cerebrospinal fluid, which  in turn should improve brain function. This is particularly good for babies because their bones aren't fused yet. Medical studies we've seen aren't particularly positive on the method, but we've heard many anecdotal success stories and think it's worth a try. Dr. Korin also is starting to do some chiropractic adjustments now that Malachi's getting older and has more stiffness.

Feldenkrais
We love our Feldenkrais practitioner, Joanna Cutler, who is very warm and generous with her time and energy. She teaches us how our movements often involve our entire body and shows us how to "go with" Malachi's movements to show him how they can be useful. For example, if he arches his back, we can arch it even further to show how that movement can be used to reach something above him, instead of saying: "No, that's abnormal, sit bent over like this." The aim of Feldenkrais is to use your body to retrain your brain as to how your body works. Again, there are some pretty spectacular anecdotal stories, like this one.

Homeopathy
I grew up with a homeopath as my primary care doctor and rarely took prescription medication or even over-the-counter drugs like ibuprofen or acetaminophen. I was written up in a medical journal for conquering mono in about a week thanks to homeopathy.
For the sake of the marketplace of ideas, I'm going to list the medicines we used here, but I strongly recommend consulting a certified homeopath as prescriptions can vary even depending on the patient's personality — they do not function like conventional medications.
About a week after they discovered the brain bleed, I began to sneak drops of Arnica Montana into Malachi's mouth in the NICU in order to help his body heal the injury. I wasn't able to do this as often as I wanted but it amounted to about once every other day.
Then, I consulted with a homeopath and he recommended Cicuta Virosa 12C, which I was able to give Malachi a bit in the NICU but mostly once he got home. In fact, I must admit that I used Cicuta Virosa as a crutch during the early months, often giving it to him simply when I was having a panic attack about not being able to do anything. Once I realized that I was giving it to him much too often and needed a plan, I consulted with Dr. Bruce Dickson. Dr. Dickson practices very far away, but as we were strangely unable to find a homeopath I liked closer to Portland, we made the trek. I'm glad we did. Ever since I started giving Malachi his prescription of Baryta Carbonica 6C, we've seen marked improvement. Though, I have to mention that we've also seen rapid development in his brother, too, so it could simply be what 6-month-olds do.

Naturopathy
Early on we consulted with a highly recommended naturopath nearby and I have to say we were not impressed. A big part of it was that her scheduler told us the wrong day, so we were double-booked with someone else and had tiny babies who could only stay awake and happy for so long. But we also thought her home/office was too dirty and unprofessional and her prescriptions were remarkably vague, especially for such a vulnerable patient as a preemie newborn. We did give Malachi added DHA and Acetyl-L-Carnitine in his formula for a while but I slacked off because those things are in breastmilk, too. I suppose I'll start up again now that I've stopped breastfeeding. Oh, she also did four acupuncture points.
She also mentioned the use of Red Deer Antler Extract and said that a patient of hers who had been born with "half a brain," had had some remarkable progress after taking it. However, when we looked into it we couldn't find much research on it and acquaintances with experience in Chinese medicine said it is a very powerful substance and should be used under supervision of an experienced practitioner. Since we didn't feel that that was her, we haven't pursued it. (But I would love to hear if anyone else has tried it!)

Chinese medicine
We consulted with Dr. Lü of Pearl Acupuncture & Wellness Center. We liked him and felt he was very knowledgeable but ultimately decided to concentrate on other treatments. We were surprised he didn't do acupuncture but instead taught us some acupressure points and a method of massage called Tui na. It involves pinching the skin of Malachi's back and walking your fingers with the pinched skin upward along his spine. Malachi hated it and since we never were able to find the time to do it with taking care of two babies, we decided to concentrate on other things. The residual effect, though, is that I do try to give him a quick "regular" massage whenever I can: diaper changes, playtime, etc. We may go back to him when Malachi gets older.


I hope this list is of use to someone and please tell me about your own experiences with alternative medicine. Even now, I am still looking into other treatments, such as LENS (Low-Energy Neurofeedback System), and Polish-style intensive therapy. I should also mention that we've decided that both hyperbaric oxygen and stem cell injections are too costly and unproven on Malachi's type of injury to pursue at this time.

7 comments:

  1. I also forgot to mention my bizarre theory on tickling. It goes like this:
    - Neural connections happen most often when we feel pleasure, i.e. if we sink a basket, we get that rush of accomplishment that reinforces those movements.
    - Malachi needs help flexing his trunk muscles.
    - Therefore, if I tickle him, it provides a pleasurable way to encourage him to flex his tummy. (I've also found scratching the top of his head makes him curl up too.)

    I think this is a good theory, but I'm not holding my breath on ever finding it in a medical journal.

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  2. You are doing such a great job Shasta, and Matt...it's no easy task, but you are SO on the right track...I find myself doing the same thing, laughter, smiling, and skin on skin be it tickling, snuggling, or doing mini-battle w/ the kids when they get more fiesty...it's all so positive. I also went to accupressure/puncture for the kids...moreso for stress, but it's all helping. Any parents who care enough to seek such extensive preventative and positive methods of medicine/therapy are so deserving of a pat on the back...for life. Because you are making the boys' lives that much better.

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  3. Thanks so much for sharing the treatments you have been using for your son. I am a craniosacral therapist and it is always wonderful to hear that our therapy is being so helpful. I also just wanted to ask if you have tried various diets? I have heard that the SCD or GAPS diet can also be helpful for CP http://www.cnsfoundation.org/site/News2?id=5319&page=NewsArticle

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  4. I find that one of the most exasperating aspects of this whole CP experience - not knowing if what you're doing is actually helping in the tiniest. Yes, as my husband says, if it's not hurting there's no harm. But eventually, if it's not helping, it's wasting hours of our day that could be spent doing other things, fun things. Our OT is the only one who has said that, because therapists are bad at doing research studies, she really doesn't know if what she's doing with Julia has helped. Just like you said, would Julia be exactly where she's at without the intervention, or would she be worse.

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  5. Yay for alternative therapies! Traditional therapy has its place, but the alternative sure are a great supplement. I personally like the tickle therapy the best ;)

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  6. I must admit I dont believe in homeopathy. My mom told me it was a cock and bull thing when I was little.

    That said, Abby does oxygen therapy- HBOT. Abby had the stem cell injection, I thought it would be worth trying too.

    I think some less common therapies are worth a go.

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