I divided the challenges of feeding and nutrition in CP into two branches; the mechanics involved in eating and the dysregulation of the body.
In the beginning, I felt daunted by the whole idea of optimizing Emma’s nutrition. The obstacles we faced were overwhelming. I felt like one of the hobbits facing a dark warrior army from Mordor. There were the responsibilities of motherhood and the responsibilities of having a disabled family member that I needed to balance. I spent hours feeding, bathing, rocking kids to sleep, traveling to therapies, doing therapies and, in between, “doing life”.
The year that Emma was born and diagnosed with CP is a blur. Throughout it I felt like a zombie. I would walk into the house after some or other errand, and realise I had no idea of what route I had taken home or how I had driven in the traffic. I was completely zoned out, lost in fright. Fortunately those days did become fewer and one learns to live with the problem. Though the size (and pain) of the problem doesn’t diminish. As my focus and energy returned, and as we finally saw progress in Emma after starting ABR therapy, I was able to look critically at a variety of approaches, opinions and options in terms of advice to parents with special needs children. There was very little information on nutritional advice for kids with CP, apart from a few academic articles on Pubmed. Far more helpful was reading articles that dealt with metabolic issues in adults with CP. This revealed a picture of Emma’s possible future and, based on this, I could make deductions of what could potentially help her.
Other sources of information included the sites that tackled nutrition in autism and, while this is a different health issue, their practical feeding strategies gave me a starting point. I also drew on my knowledge of immunology, chemical pathology, connective tissue science, neurology and just being being a mom. I read many books on nutrition and current basic science papers on CP. I spoke to other parents who were dealing with the same feeding problems as I was and, as I mentioned previously, my ABR team helped a great deal to crystallise the issues.
I am now able to present a visual summary (see the diagram on this page) of the two distinct sets of problems that I keep in mind when talking about nutritional and feeding issues in CP. They are:
How I understand nutritional issues.I think this image will evolve as I learn and discover more.
The mechanical/structural problems.
This set deals with the actual digestive system challenges I saw in Emma. (I choose to call them challenges because I think this problem is modifiable if one knows what to do about it.) It includes eating, sucking, tongue movement, chewing, swallowing, digestion and stool excretion. I also deal with dental health and development in this part because a lot of what I do aims at improving structure. I have drawn on several good academic articles and I will share how I dealt with Emma’s structural challenges around feeding in the next post. Fortunately, Emma has not required a feeding tube and thus I feel I cannot write authentically about this. However, as this is a need for many parents, I am planning to cover this by interviewing parents who have been on this journey and are willing to share their stories.
The second set of feeding challenges in CP deals with the metabolic dysregulation that we see and battle with, but that nobody really talks about or understands. This area tries to bring all the issues I saw in Emma’s system under one umbrella, including: sustained immunological dysfunction; mitochondrial damage with oxidative stress; dysbiosis of the gut; neuro-inflammation with the concept of the “brain on fire”. The downstream effects of these are a negative cycle that will lead to poor nutritional uptake, food intolerance,recurrent infections, muscle wasting, contractions, lack of energy, lack of thriving, poor weight gain, insomnia, pain, constipation, headaches, dyscognition, mental challenges and in severe cases – epilepsy.
A key understanding of this second set of challenges lies in what I found in the literature around immunology, biochemistry, mitochondrial medicine and connective tissue changes seen in CP. I have come to understand that Emma’s immune system is “stuck” in a pro-inflammatory gear. I am not talk about red, hot and fevery kind of inflammation. This is a kind of inflammatory phase that, if present, you are not aware of. It has also been described as a “silent inflammation”. Immunology is a very complex science and I don’t want to get too technical when I write about this because that it might detract from what I want to share. What is important is to know that this changed immune status leads to downstream effects in the child with CP. There have been several articles where this sustained pro-inflammatory status in children with CP have been described at length. Researchers know of its presence, but nobody knows for sure what causes it. Some argue that the inflammation was present in the mother and that these inflammatory chemicals (cytokines) somehow cross over to the child and cause brain damage. Others feel that an incident during or shortly before birth kicks off the negative cycle. More currently, with the study of the ecosystem of gut bacteria (the microbiome), scientists are postulating that an imbalance in the gut bacteria in either mother or child is a very plausible cause of this in our kids. (I suspect, but still need to confirm, that dysbiosis and gut problems are the most likely cause to Emma’s inflammatory status.)
I also don’t want to oversimplify the matter, because the body is a complex universe in which many factors are at work. However, I am confident in saying that the current medical approach to CP tends to bracket the issues we see in CP into small blocks as if they are stand-alone challenges that are unrelated or, at most, have a relation that is poorly understood. This “silent inflammation” was something my paediatrician was not aware of. Medical handbooks on CP pathology do include it as an important finding, but as it goes with many neurologists, the inflammation is always viewed from a neurological perspective. What is going on elsewhere in the body as a result of this situation is rarely a topic of discussion. The health issues in CP are therefore not managed medically by addressing the cause of the problem, but are purely symptomatic treatments. Furthermore many of these treatments have side-effects, have to be given chronically and, importantly, many treatments are only partially effective in the management of the symptom.
Here are a few examples that really illustrate this gap in our current approach. Firstly, many children and adults with CP are known to have what is known as osteopenia (brittle bones that break easily). This is often ascribed to the “lack of weight-bearing” in the patient who does not walk. Another example is the child with CP that does not sleep. When all easy-to-identify causes such as apnoea, nasal obstruction and reflux have been excluded by the doctor, there are often only melatonin or sedatives left to try – in this process no real reason can be given as to as to why insomnia takes place. And why does melatonin work? Another example: we know kids with CP experience pain and this is often vaguely ascribed to spasticity, deformity or “priming”. What concerns me is that few of the explanations are ever fully explored or even validated in science.
The fact that kids with CP are treated by specialists who only view the child from their angle of expertise compounds this problem. What made me wonder about this the most was that when we have a brain injury – on the one hand, there is a plethora of new research available showing how the brain is so plastic and can recover well, particularly in a young individual. On the other hand, for some children with CP, especially the ones with severe CP, this is just not the case. They never seem to recover, indeed as time goes by we see deterioration. So what is going on? In many ways I felt so alone with these questions. Sure, I always got a long lecture on “Emma’s seating position” from my Orthopedic surgeon and how this could be optimised with props and braces. I never got a lecture on nutrition or on how I could modulate her system to bring balance back to her metabolism and enhance her immunity. In a way I feel grateful that there was no silver platter of knowledge, because I have learned so much. Much has also been discovered in the recent few years. The whole field of epigenetics (how gene expression can be influenced by environment and external factors) is exploding, the microbiome of the human was only discovered in 2008, connective tissue (the forgotten tissue) has finally been put on a world stage as recently as 2007. A new connective tissue targeting therapy, ABR has given hope and positive changes to many in this sphere. All this still has to be incorporated into our medical understanding and definition of CP.
Today I know, that when considering the metabolism of the child with CP, it is important to view it not just in terms of nutrients (how much fat, protein and carbohydrate a child eats), but to combine all understandings of nutrition with current scientific understanding of other areas of CP study (immunology, energy production, biochemistry, psychosocial, neurological and connective tissue balance) in order to have an effective approach. If I take this approach, it is possible to see where Emma’s clinical challenges fit in the constellation of the dysregulated system.
Obviously, the dysregulated system in CP, cannot be fixed overnight. Nutrition alone can bring a great degree of recovery, but when one adds on other therapies that modulate the system (in our case ABR) the results are much more than satisfactory. This is why I see nutrition as a long-term investment. In posts to come, I will talk more about the nitty gritty of how we built a sustainable approach to help bring regulation back to Emma’s little body.
The journey of nutrition is off to a late start with us. Apart from wanting to help Emma, I strive to optimise our family’s nutrition. As a family physician I am all too aware that for any approach to work as a lifestyle, it needed to be one the whole family can practically partake in. I try to build on these basic cornerstones to help us all remain as nourished and as balanced as possible.