Feeding older children with CP. Avoid Dairy? Avoid Wheat? Food intolerance tests?

Everyone seems to be an expert on nutrition these days, and some of these experts are particularly wacky. When I moved from “I’ll give Emma anything as long as she eats something” to “what can I feed her that can help her heal?” I learned a huge amount. It’s taken me several years, though. I hope that my summary below helps you and your child a lot faster.

* * *

In the past few years I have read about and experimented with many nutritional concepts. When I embarked on this process, Emma had improved a lot due to our ABR efforts. She was eating more solid food and had started drinking from a cup. When she was four years old, my research around connective tissue had made me realise that her brain injury was far from the steady state that classically defines CP. If you’ve read my earlier posts, you know I’ve gone into detail about the issues around ongoing inflammation and stress in CP bodies. I realised, that if I am able to see improvements by lowering stress and inflammation in the body as I did with ABR, I could increase the benefits by supporting the ABR process with an “anti-inflammatory” nutritional approach. How to achieve this was a whole other question.

I spoke to many people who saw themselves as experts, read the books of nutritionists and also the science. I tested many of their theories – some worked and others didn’t. A common instruction was that Emma should eat a gluten-free and dairy-free diet. Then there were the supplements. I read books that rolled off lists and lists of supplements. I bought them all, but I never really knew exactly how much or which supplements to give her.

While this post will be about food specifically, my next post will tackle supplements and additional health issues in more detail.

When I think about Emma’s diet, there are two broad paths that I have followed. The first path, was the one when I lived overseas with little medical resources, I followed a “blind” nutritional plan. I’ll call this the empirical plan: a plan where 80% of what you do helps in 80% of the cases. The second path has been the one where, back in my home country, I had more medical resources which helped me access tests that gave Emma an exact diet based on her exact needs. This is my tailored plan. It’s a plan that works for Emma 95% of the time. I say 95% because I still am working things out that have not yet been tested.

More and more evidence is pointing to the goodness of eating real food.
Both paths have given me a lot of gains and that the empirical approach is better than no approach at all. However, the tailored plan is something I wish I could have accessed sooner.

The Empirical Plan

Essentially this was a modified paleo-Mediterranean diet based on plants, fruit, clean lean sources of meat, good fats, dairy, seed and nuts. In summary it means:

• Eat real food. This means nothing processed, nothing from a packet, nothing with a list of ingredients. If your child uses a tube to eat, I guess this approach would mean blended real food.

• If the child cannot chew well, give them a mix of textures. More solids to practice a bit of “chewing” but the same food mashed or pureed as well because the more refined the food, the easier it will be on the absorption and the ultimate nutritional benefit.

• Avoid dairy only if it is a problem. This is a controversial issue and without food intolerance testing you will not know what to substitute. I am not in favour of telling parents to cut out dairy in a blanket fashion because the dairy substitutes can cause other problems. Rice milk is a sugary starch, soy milk is estrogenic in action and often GMO modified, nut milks could elicit an intolerance. If your child is very constipated, casein (the milk protein) could be an issue. If you exclude all casein products from the diet for a time and the constipation improves, then there is your answer on dairy. Then one must exclude it from the diet until the gut is healed or indefinitely. Some kids are only lactose intolerant and here one could use lactose-free products. If dairy is not a problem for the child, it still is an excellent form of fat and protein that many children enjoy consuming.

• No added sugar. No sweets, no table sugar, no high fructose corn syrup. In our home we sweeten food only on occasion with a bit of honey or fruit. Avoid artificial sweeteners or use them sparingly.

• Focus on eating fibre from plant sources but avoid grains, especially gluten-containing grains. There are many ways to get fibre other than grains. There has been much written on why this is a recommendation – I suggest you click here for further reading.

• If you can, eat organic. Even better, start a veggie patch (my next project!). If you can’t, wash your produce thoroughly before consuming.

• Focus on sufficient fluids. Have a bottle/cup of liquid ready at all times. Put it where the child can see it and they can show you if they are thirsty. Offer something to drink with every meal and between bites. Pure water can be flavoured with bits of fruit or a few stevia drops. I find Emma drinks flavoured liquids much better than water.

• Fats: Avoid transfats. These are found in margarine, seed oils (sunflower, canola and soy). Use ghee, butter (if dairy is not an issue) otherwise use coconut oil and olive oil and avocado. Avoid frying foods. Eat oily fish, like salmon once a week if you can.

If one eats this way, you can cover most of the nutritional needs of the family. Since we started eating like this, Emma has really developed well. What gives me the most pleasure is to see how she is enjoying a wider variety of healthy foods. It warms my heart to see her slurp up zucchini spaghetti bolognaise as if it was the best meal on earth.

Important! Rome was not built in day. You will need to get the whole family to eat like this. There is no point in preparing three different meals for three different people. If the family eats well, the child will eat well. Keep going, build up the process and don’t give up.

The Tailored Plan:

In October 2015 I was able to send Emma’s blood sample for a food intolerance panel test. This was probably one of the best things I could have done for her. Since she cannot speak, its hard to know how food makes her feel. I realised that if she had a “leaky gut” (and most special needs kids do have “leaky gut”) there would be food intolerances. When the immune system is stimulated by intolerance to certain foods, this fuels the pro-inflammation of the gut and also the brain. On the one hand, I knew that cutting out gluten and dairy (she was constipated) would be a good idea; but on the other hand, I didn’t know how I should substitute these foods. This is where I feel many expert nutritionists and “experts” fail with their recommendations. There is a mantra out there telling parents to cut out wheat and dairy and all will be well. This might help in 80% of the cases, but without a test one can never know for sure. Every child is an individual. Moreover, there are those who argue that all you have to do is focus on healing the gut and that intolerance testing is not essential since these will clear up once the gut is healed. However, I feel that we need to do both: heal the gut and deal with intolerance at the same time if we are to deal with inflammation in a comprehensive way.

Back to Emma’s results as pictured here:

food-intollerances-emma

These were nothing less than an epiphany for me. It gave me all sorts of insights. For example, eggs were a major issue. At that point she was eating eggs every day. Nuts, especially almonds, were an issue – and I had been replacing her cow’s milk with almond milk. She turned out to be fine with casein and only borderline intolerant to cow’s milk. She had an issue with wheat but not with gluten specifically. And so this list went on.

In the end, I knew exactly which foods to avoid and which foods to give. My impressions of her progress were that she slept better and she was much more aware. There have been gains in speech, a fungal infection of her toenail cleared up in two months. She drooled less. Her learning accelerated and I felt her muscle tone was improved.

After this test I kept to the principles I outlined above, but I applied the tests results in the food selections. I had to make some compromises since we needed to cut nuts and eggs from her diet. This meant I started to include bread I baked with flax eggs and buckwheat in her diet which meant eating a bit of grain.

In parallel to feeding Emma the right foods, we have been taking measures to heal the gut. This meant including a daily probiotic supplement and L-Glutamine. We also added other supplements – but more on this in the next post.

Emma is definitely still on a journey and we are struggling forward inch by inch every day. But even an inch is progress, isn’t it?

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