A Lesson in Spasticity.

It was all about uncontrolled spasticity.

We have seen an increase in Owen's spasticity over the course of the last several months, mostly during periods where he was very uncomfortable - with illness, fatigue, constipation, teething, and reflux from the high fat ketogenic diet. We are fortunate to have a long-standing, wonderful relationship with Dr. M., an expert in spasticity management at UW/Seattle Children's Hospital, and this spasticity had been managed pretty nicely by him over the course of the last two and a half years with Diazepam. What we realize now, is that the pneumonia and GI distress quickly and acutely escalated Owen's spasticity to a level that was both painful and severely distressing to him. We now have an intimate understanding of how this type of muscle spasm/disfunction becomes both increasingly worse and more frequent during an acute phase like this when left untreated. We also learned that spasms in the feet - due to the number and complexity of muscles, tendons, etc - are especially painful. What Owen was experiencing was similar to a prolonged, intense charlie horse, most likely in both his calves and feet.

This is the issue that we suspected was at the core of Owen's discomfort, but not having experienced this type of acute escalation, and all of this on the heels of Owen having pneumonia AND the GI issues AND being on the ketogenic diet (which has it's own pretty serious, potential risks) AND being prone to seizures, it was absolutely imperative that we rule everything else out.

Botox injections are not an option for Owen's spasticity as they are really only effective in cases where there is very specific areas of spasticity. In Owen's case, they would have a difficult time determining whether to use the treatment in his hamstrings, calves or feet. And with "generalized dystonia/spasticity," Owen will probably never be a good candidate for botox both because of the nature of its (specific) application and the fact that it needs to be repeated on a regular basis. But never say never, right? So, Owen started oral baclofen three days ago. While oral baclofen does have side effects (which is why we've held off using it), we've been assured that it is "perfectly suited" to children like Owen (keeping in mind that no pharmaceutical is perfect) and the best thing for him right now. It will decrease the spasticity in his entire body but once he's adjusted to his dose, won't sedate him. His body will be free and his mind available. That is our hope.

In addition to baclofen, Owen was fitted yesterday for foot orthotics which will keep his feet in the neutral position. We have been trying out his "old" orthotics the last two days, which are much too small for him now, to see what effect they would have. They don't decrease the spasticity, which is to be expected, they do eliminate the extension of his feet into the downward flexed position. This has completely stopped the "episodes" of pain. The new orthotics will arrive later this week.

We were seen in the orthopedics clinic at Seattle Children's Hospital yesterday for Owen's spine and hip consult. The final read of Owen's spinal x-rays, the one from Fall 2008 being compared to the one from August 2010, indicates that his curve has increased from 41 degrees to 48 degrees. A decent increase, but certainly not terrible given the circumstances. The curve is in the lumbar region of the spine (curves in different locations affect different functions and organs). Growing rod surgery is most likely in his future, but we're not willing to say, right now, that it is a definite. But, thankfully, this procedure does exist. There are some risks, including fracture of the ribs where the upper screws and hooks attach, and dislocation and breakage of the rods. We will decrease the likihood of these happening if Owen's spasticity is better managed. MUCH better managed. It is obviously a long and complex surgery and they also prefer to see kids at a healthy weight in order to prevent any issues while under anethesia and to prevent infections. Plumper kids do better. Owen is far from plump. They indicated that he also has a good deal of flexibility in the area of the curve and if we are able to maintain this, keep his curve from worsening and maintain his very healthy pulmonary state, then there is no urgency to move forward with the growing rod procedure. These are challenging things to achieve in a child with no head or trunk control. What is most at-risk for Owen are his internal organs and the effectiveness of his pulmonary system - both of which can be compromised when scoliosis becomes severe. As a child with unsupported/untreated, significant scoliosis grows larger and heavier, the weight of the unsupported child compresses the organs and lungs. So we will keep on with stretching exercises, keep on with feldenkrais, keep on with cranial-sacral appointments, and with regular warm baths (he loves these so much, and relaxes so much, that a jacuzzi tub may be in our future - not a bad thing for ANY of us) and massage, massage, massage... Owen will have orthopedic follow-up appointments every six months and, in addition to the one we have scheduled in March, he will have a CT of the spine (under general anesthesia) to determine if, at that time, there is any deformity of the vertebrae which would make growing rods a more urgent issue.

After repeated blood tests, ultrasounds, several x-rays, numerous exams, consults, ER visits, in-patient stays and countless hours on the internet, what we have learned, and what is not at all surprising to us, is that Owen is actually very healthy. Aside from needing to gain significant weight (which we've been trying to advocate for for months now - calories are being limited by the ketogenic diet), and, of course, the curve of his spine, he's a sturdy little guy. He really is amazing.



I realized when I was forced to give up Owen's blog for several months earlier this year, that I blog not only for him, but for us, for our family, friends and for all of the families that we stay connected with. I always receive such valuable input and feedback when we go through these issues that are new to us - we feel like we're not going it alone. And we're not just receiving feedback and ideas from other parents with SN kids - which is always valuable in a very specific way - but also from so many of our friends and family members. We are so grateful for all of the support we've received these last few weeks. It makes such a huge difference. I only hope that these LONG posts, and the focus on Owen's life and complexities (as a family, we do tend to be pretty private people so this isn't always a comfortable process for me), assist other families in feeling more comfortable reaching out and finding solutions.

So now. We relax for a few days. Maybe even an entire week. Time at home. I need to get my hair cut. Elliot needs his hair cut. I need a massage. Elliot starts preschool, a Parent and Child Program, at Kingston Co-Op Preschool, on September 17th. Owen starts communication and motor therapy at Cascade Children Therapy on September 21st. I'm even more excited about this program now, knowing that Owen's spasticity will be better managed and his mind more relaxed and available (fingers crossed!). He and I will be in Seattle (Mill Creek) for his "school" every Tuesday.

Elliot and I read one of our current favorite stories this morning to Owen. Owen smiled and smiled. He is feeling better and, just as quickly as life became difficult, it has become easier.

We leave you with a little Moo Ba La La La.

S/K/O/E

Our work at home.

Thank you all for the wonderful feedback from the last post. I hope that those of you involved with feldenkrais (or other interventions that work for your child), will continue to share information and valuable feedback so that these posts can serve as a resource for other parents.

I also wanted to make sure to mention that feldenkrais is very much for adults as well and can be beneficial for individuals with Multiple Sclerosis, for those with Fibromyalgia, Stroke and Parkinson's and also for improving balance and mobility in older adults.

Some of you asked to see what exactly we are doing with Owen, so as time allows (as I either juggle the video camera OR I have someone else to help hold it), I will post short clips of some of the work we're doing at home. This will be a good motivator for me as well so that I can document Owen's progress.

Here are a few clips from today...

In these first two, I am mimicing the play and exploration that babies do with their hips, legs and feet. I am gently grasping Owen's ankles and feet, and slowly lifting his hips off of the ground while encouraging his hands to touch the opposite knee as his legs come towards him. I try to work in as much cross-lateral movement as possible. (If you imagine a line going down the middle of your body top to bottom, anything that crosses over that midline can stimulate all four lobes of the brain. Repetitive cross lateral movement, such as crawling, also strengthens and integrates the left and right brain.) I am also crossing one foot over the other knee and encouraging him to bring the lower leg up so that it lifts both legs off the ground. Owen was doing this on his own in the last segment of the video that I posted on June 2nd - which is why you hear me cheering him on at the end.





One of the "basics" that we've learned from both Ingrid and Marsha is the importance of "planting" Owen's feet whenever possible, to provide the opportunity for this feedback through his feet, legs, hips and spine.



Here is an easy exercise that we do multiple times everyday:



This last one is a nice way to keep the spine limber and provide sensory input to each side of the spine and rib cage. The key is slow, gentle articulation of the spine, alternating sides and moving up and down the rib cage. We've been doing this exercise for well over a year - you can tell how much Owen loves it. (I apologize for the noticeable heavy breathing in this one and the first one - I was literally holding the video camera in my mouth for some of these. Thank goodness for the iPod Nano.)

Feldenkrais, feldenkrais, feldenkrais!

Owen is currently working with two feldenkrais pracitioners, one on Bainbridge Island and the other based out of Port Townsend (about 45 minutes away from our home in Indianola) and has been actively participating in this "somatic education" since October of 2009. Our goal is to eventually have him in feldenkrais appointments twice a week, perhaps sometime this Fall. For the time being, we are at appointments just once a week due to other commitments both boys have during our busy weekdays. We also work with Owen at home each day - anywhere from 15 minutes to an hour, once or twice a day - as his mood allows.

(Important note about feldenkrais: It is all about allowing the participant to lead the way. The movements are not forced and should be enjoyed. For most children, sessions are kept short, from 15 to 45 minutes so that the child does not become overly tired or frustrated. Multiple, short, daily sessions are better and more productive than longer sessions, thus the importance of caregiver or family involvement at home.)

Currently, Owen sees Marsha Novak once a week on the island and Ingrid Musson once a month when she travels to the island from Port Townsend to see clients on Bainbridge Island and the Kitsap Peninsula. Our introduction to feldenkrais was with Ingrid in Port Townsend. She is really the person who laid the groundwork and set the path for Owen and his success with feldenkrais. She has an incredibly sensitive touch and deep understanding of infants and children with movement/motor issues.

We learned about Marsha and her recent graduation from the Anat Baniel Method training course through my chiroprator, Mari Ellingsen, who is also the very gifted woman who provides Owen with his cranial-sacral sessions (also on Bainbridge Island). I have been seeing Mari for almost ten years and when she mentioned her friend and cohort, Marsha Novak, who was interested in working with Owen, I was both excited and curious as Bainbridge Island is closer to home and closer to Owen and Elliot's grandparents, Leslie and Herb, who now care for Elliot each Thursday when I take Owen to see Marsha.

Both women, Ingrid and Marsha, are incredibly talented, compassionate and completely connected with Owen during his sessions. Each brings their own experience, and gifts, to their practice. Ingrid worked in a birth to three program for ten years, as an early intervention physical therapist. This experience with babies/children brings to her feldenkrais work, a core understanding of the necessary sequential milestones and associated developmental movements. And according to her resume, in the last 29 years she has "...accumulated over 2000+ hours of continuing education, which include Feldenkrais, visceral manipulation, cranio-sacral therapy, Mulligan’s mobilizations, orthobionomy, soft tissue release, neuro-structural integration, Total Motion Release and therapeutic healing touch." She has worked as a physical therapist for almost 30 years and as a trained feldenkrais practitioner for over 15 years.

Marsha has been practicing physical therapy since 1985, an impressive twenty-five years, and is well-known and respected on Bainbridge Island as both a physical therapist and feldenkrais practitioner. She became a Guild Certified Feldenkrais Practitioner in 2003. She recently completed the Anat Baniel training and is a certified ABM Practitioner. Her passion for feldenkrais and her drive to assist children like Owen in achieving milestones and to help make possible what others might believe to be impossible, is evident in each session we have with her.

I've included a couple of recent shots of Owen working with Marsha. (Note he is looking to the left in the first photo and laying on his right in the second - I will discuss the significance of these positions later in this post.):






Although currently, feldenkrais is not a "conventional" intervention for children like Owen, neither is it one without its scientific, validated, measurable merits. It has the ability to create significant, almost immediate, percievable changes in the way that people move and feel, including children with severe motor impairments such as Owen. What is key for Owen is that in addition to increasing overall PURPOSEFUL movements, feldenkrais helps to transform existing, random and mostly uncontrolled movements into productive ones.

What Owen was NOT doing as of October 2009/What he IS doing since feldenkrais:

* Turning his head consistently to the left, towards light, sound, stimulus. For most of the first two years of his life, Owen NEVER turned his head to the right.

* When lying on his back, lifting his hips up from the floor/bending his legs in the "frog" position and moving each independent of the other. Prior to feldenkrais, he was almost always straight-legged and stiff.

* Opening up both hands consistenly - "scanning" with his right hand. His fists remained in tight balls for the first two years of his life. He is now able to reach and touch a switch with BOTH hands.

* Rolling over from his right side, the side that prior to feldenkrais, initiated the extensor pattern, and one so extreme that he could not break out of it.

* Comfortably spending time on his stomach and lifting his head up into midline positions. This is THE skill that Owen needs in order to develop trunk and head control. By strengthening the muscles that run along the spine (Erector Spinae), he will develop the strength he needs to hold his trunk and his head up (trunk control comes first, then head control). The key here is that feldenkrais forces the brain to recognize and pay attention to the less dominant/less active side or parts of the body which in turn creates new pathways for this new, learned behavior. Right now, Owen's muscles on the right side of his spine are so overactive (due to cerebral palsy, spasticity, dystonia) that they override the left side's ability to work properly. This has caused severe scoliosis AND made it difficult for him to gain enough muscle control to support his trunk. Since starting feldenkrais sessions, Owen has become not only tolerant of, but very agreeable to, being in the prone position (stomach). He is increasingly bringing his head up and, on occasion, up and into a midline position. There is now a new pathway in the brain to receive the information coming in from a different part of the body.

These developments may be hard for many to contextualize or fully appreciate, especially for those unfamiliar with children who have significant, global developmental delays and severe motor impairments. Most children (typically developing children) put the pieces of the puzzle together so rapidly that one often doesn't even notice the leap from one milestone to another - it is almost unperceivable. But if you slow the shutter speed down, you realize that there are shifts of the body so slight and movements so small, that they are almost lost. These threads are vitally important to development and achievement of milestones and this is what our work with feldenkrais is all about - helping Owen to feel these, learn these and put them all together so that he is enabled to make his body work for him.

A valid argument might be that these were developments that would have occurred, regardless of therapy/intervention. But... Owen had made little, if any, progress with physical therapy sessions and the development and timing of these new patterns and movements were so perceptible and so intimately tied to his feldenkrais sessions that is was obvious that this was the catalyst for these changes. In fact, watching Owen during these feldenkrais sessions is a treat. He smiles, focuses, perceives the movements... You can see the integration happening at both a physical and neurological level. A significant component to the feldenkrais method is that the participant/child be able to allow the movements and that these movements be "guided" by the practitioner. Nothing is forced. Feldenkrais works with the child's unique movements and within a framework of the natural developmental steps, to create purposeful, constructive movements. It all makes so much sense...

Here is an example of how this works for Owen:

Owen never tolerated laying on his right side prior to feldenkrais (you'll notice in the video and in the still photo from above, however, that he is happily laying on his right side). This is due to the fact that it is/was a major trigger for his extensor pattern. Prior to feldenkrais, if he was on his right side, he would receive signals that would cause him to arch - fiercely. He would extend his left arm, tilt his head far backwards. His left leg would straighten out and become stiff - unbendable. He would be STUCK in this position and become very agitated. Through the use of feldenkrais movements, Ingrid and Marsha have helped Owen feel his body and understand that he can bring himself out of this pattern. They have allowed him to FEEL the series of movements that bring him onto his right side and those that can return him to a back-lying position. Although it is not yet consistent, Owen can now lay on his right side without being sent into this extensor pattern. As you will see from our video, he has even been able to learn how to work with this pattern and to use it constructively - to use it to learn how to roll over.

If you want to read and understand more about feldenkrais here is a great piece written on the subject (and it mentions my friends at the Avalon School!), and another at the Anat Baniel web site.

A couple of excellent, detailed videos on the subject:

Video 1

Video 2

And here is OUR video. This video is less about the feldenkrais techniques that we work on at home and more about Owen and his demeanor throughout the time we spend doing this work. I was holding the video camera, so for the majority of the time it was impossible for me to film the movements and work with Owen at the same time. This video does illustrate how receptive Owen is to feldenkrais and how it very much engages all aspects of his development - language, visual perception, spatial abilities. (Note that this video was taken during the floor exercises that we were doing (feldenkrais) yet Owen does spend a good deal of time in his chair and is learning to use a communication switch as well. More about that later...)

I could write until midnight on this subject, but I have sleep to find and dreams to dream. If anyone has any feedback or wants to know more, or talk more, or share your own thoughts on or experiences with feldenkrais, please email me or leave a comment. It won't be the last time I blog on the subject.

And speaking of physical therapy, I had to toss in a shot of Elliot taking a few lessons from Grandma Mimi on the subject. It is important to exercise and do your daily PT assignments - even at age 90!

Oh, and I couldn't resist including a recent shot of the boys...

Cheers!