In the past five years since we have been doing connective tissue targeting therapies on Emma, she was finally able to progress.
I want to jump for joy every time I look at her because I can just see how far she has come. Today she is attending a school for kids with CP and other developmental problems. She is doing so well. We are grateful.
Yet I still sometimes have to get off cloud nine when I see how “the world” sees her. I recently spoke to a friend who is also a pediatrician. He said something like: “Its really nice that you did some relaxing massages with your daughter, but she really needs to be properly supported now with therapies that will reconnect the neural pathways.”
This is not a new idea. In the early days, before I knew all the evidence, I would throw my heart and soul into this type of training. It got us nowhere. In fact, the sense of failure both Emma and I felt damaged our relationship. The hours and hours I spent “teaching her” in various therapeutic contexts never got us anywhere. The fly-wheel was spinning in a downward spiral and I was helpless to stop it. By the time Emma was two, she had become so stiff and spastic that we could not do any kind of “practicing” with her. It was devastating.
Thankfully our ABR journey started soon after this and since 2016 we have joined a local BDA group that continued her path of improvement.
It was at the side of my daughter that I was a personal witness to the kind of transformation that can happen when you target not the brain but the tissue. In a previous post on connective tissue science, I explained how the connective tissue structure is greatly affected, especially in GMFSC levels 3-5. In this post I showed pictures of muscle tissue biopsies and its clear that kids with severe CP do not have “normal” muscle tissue. Back then I knew there were abnormal immunological changes of sustained inflammatory responses after the brain injury that could account for the development these abnormalities, but I didn’t quite understand it. Anatomists and other scientists are finally also looking at the issue of cerebral palsy and the picture that is developing is clearly not ony that can be attributed to being purely a “brain issue.”
In a more recent article, Carla Stecco’s group, connective tissue research group from Italy, has published further important work in this regard. The authors write about the liquid component of the connective tissue. Connective tissue has fibrous components (e.g. collagen and elastin fibres) and also liquid component of which a viscous fluid by the name of hyaluronic acid. Hyaluronic acid is an intersting substance because its key attribute is the viscosity it creates in the fluid compnent of the connective tissue. Typically, the fluid component of the connective tissue allows for the connective tissue’s fibres to slide smoothly allowing the muscle compartments to move and contract unimpeded- almost like a lubricant in a car engine helps to smooth the working. The fluid component is also where metabolic and immunologal factors circulate and where metabolism happens. The interesting part is that the more of this hyaloronic acid there is, the more stiff and and sticky the movement between layers become. This leads to altered mechanical tension and signalling in the tissue itself and left untreated, the tissue will become first spastic and then fibrotic- similar to scar tissue.
Here comes the hum dinger: In people with brain injury, there seems to be a rapid increase on this substance in the tissue. The brain injury it seems, is the primaty insult, BUT there are connective tissue changes that are dramatic and significant.
I believe this point is often missed in the rehabilitation approaches for kids with CP.
There are many scientists who believe that tissue stiffness is a key contributor to the spasticity and muscle changes we see in cerebral palsy and stroke patients. However, this still needs to become common knowledge.
If this science is true, and the evidence is increasing, it would mean a serious reconsideration of current approaches. Clearly this type of tissue will not respond to strength and resilience “Muscle training” as would the tissue of healthy individuals. In fact, it may even be harmful.
While I can’t change the way my learned paediatrician friend sees Emma’s problems, I can make life choices that will assist Emma as she grows and and navigates the system.
I have found some helpful things that I believe, has helped my daughter progress despite this dire situation.
There are a couple of interventions that appear to be safe and have an effect on changing the viscocity of the connective tissue.
- Hydration: On ABR and BDA assessments, it is often clear that the CP kids have dehydrated tissues. This is often attributed to parents not keeping up with the fluid demands in their child, but I believe that its more likely that tissue that has not been stimulated with these techniques will not retain fluid as well. I noticed an increase in Emmas thirst and fluid retention when we do intense blocks of conective tissue therapy. This is further supported by the science. In order to retain fluid in the tissues, the tissues need to be mechanically stimulated. Healthy people do this by moving around. In kids like Emma, I do it for her through our therapy.
- Infra-red light: Infra-red blankets are good for pain but infra-red also seems to decrease the viscocity of the liquid in the tissue. Leonid Blyum, of ABR has come up with a very good quality infra-red vest that targets the spinal column. Emma wears hers up to one hour per day.
- Bio EQ gel. This gel, also a Leonid invention, contains leech extract. I have used it morning and evening on Emmas face and back for two years. It really supported the development of her facial expressions and also assisted in her jaw movements.
- Connective tissue targeting therapy. Depending on the country you are in, ABR or BDA are both successful methods to help create a healthier connective tissue environment that allows for healthier muscle tissue development. If you are not in one of these specialised programmes, osteopathy and other manual methods have shown encouraging results.
- Nutrition: See my previous posts
I am personally, very excited about this developing science, because it underpins what we have been seeing in Emma since 2011. I know the assumptions are true, because the invervention is working. This is worlds away from the days when I was fruitlessly “training the brain.”
“Everything seems impossible until its done.” Nelson Mandela