Feeding brain injured infants. Getting off to a good start and a letter to my younger self.

As my regular readers will know, I want to share as much of the information I’ve learned as possible so you can benefit from my research. So in this post about feeding a baby with a brain injury, I want to start by highlighting why I think it is so important to address inflammation within your baby’s body in order to promote development. After that, I promise I’ll get on to the practical information.

Feeding the whole body

As I’ve mentioned in earlier posts, the idea of food as medicine only came once I’d seen progress in Emma’s structural and neurological development and realised I could encourage that progress with nutrition.

Medical literature is full of articles talking about nutritional status in kids with Cerebral Palsy. The trend seems to be that the more severe the CP, the more severe the nutritional challenges. I think everyone agrees that we need to think of diet in terms of high-density foods. This means, each bite needs to pack a punch nutritionally. But I think there is more to it than that. Every bite also needs to bring balance to the immune system.

Part of my research into nutrition has involved developing a deep understanding of the biochemical issues that Emma faces. Coupled with my desire for her to gain maximally from our ABR efforts, I’ve also focused on supporting the whole body (brain, bones, organs and connective tissue) instead of just focusing on the brain.

 

emma-pizza
Emma eating pizza in Florence

Eating pizza is a rare occasion in our home. You actually need to be on holiday in Italy to get one. (PS: this photo was taken before I knew she was intolerant to egg, wheat and lactose. As you know, this has been a learning process!)
A balanced diet?

I started our journey by experimenting with various foods and supplements, but I soon realised that the key is the food. Supplements are all the rage, but when you have a child who struggles to eat and you then try to give her handfuls of supplements (as some people recommend), it is expensive, hard to do and potentially ineffective. Don’t get me wrong, the right supplement at the right time and in the correct dose is a lifesaver, but if you have a good diet (especially for a child), the need for constant supplement use becomes smaller. I do use certain supplements for Emma, but I use only things that I can easily hide in her food and that are easy to incorporate into our daily routine. A good example is the probiotics supplement I stir into her oats.

Emma has also changed since I started thinking about food as medicine. In the beginning, before I actively addressed her immunological status, she craved only a small selection of foods. These were bananas, milk, yoghurt, salami and bread. I think she ate this for months on end. I would offer her other food, but she would just push it out with her tongue and we would struggle through the meal.

Five years ago, this was hugely frustrating; I felt I was making no progress. My research into connective tissue and CP helped me understand that addressing the sustained pro-inflammatory response was the key. I noticed that all “anti-inflammatory” interventions I tried seemed to help her. There is sound evidence that the on-going metabolic and neurological problems kids with CP face are due to a persistent pro-inflammatory response in their bodies. Pro-inflammation drives the structural breakdown (for example: poor muscle tone, spasticity and contractions). Persistent pro-inflammation also drives continuous neurological (brain) damage through a mechanism called glial activation. It turns out that imbalances in the gut causes inflammation that directly and indirectly fuel inflammation and neuronal death in the brain. This is concept known as “brain on fire” and is a major factor in kids with behavioural problems such as autism, ADD and could lead, in severe cases, to epilepsy. I believe this is a underestimated factor in kids with CP. Cerebral Palsy is typically explained in conventional medicine as a static brain injury (that does not get worse) around birth, but studies that describe these persistent pro-inflammatory responses in kids with CP, by default, suggest otherwise. As parents we live with the reality of our children’s deterioration that we often helplessly observe. Thankfully all hope is not lost.

While I knew inflammation was key for a long time, I did not understand where this pro-inflammation came from and why it kept persisting. (I wasn’t alone, the scientists writing about this didn’t know either.) I finally started reading about the microbiome (see below) and how an imbalance sustains inflammation in the body and the brain. I managed to meet with Prof. Patrick Bouic, an immunologist and head of Synexa Life Sciences in Cape Town, South Africa. During our meeting he explained that an imbalance in the microflora of the gut is a major factor for sustained inflammation in almost all special-needs children.

I will discuss how we addressed Emma’s inflammation status with Prof. Bouic in the next post dealing with older children. But I will say this: since focusing on her diet and her gut there has been a massive shift. She now eats a broader selection of food, we saw motor gains, cognitive gains and emotional gains almost immediately. The chronic constipation that always seemed to hit, despite all my attempts to avoid it, just went away. The best news for me was, that this extra help seemed to accelerate Emma’s response to all her therapies, but most of all ABR. I’m not exaggerating when I say the change was overnight.

However, we need to start at the beginning, so let’s start with feeding babies. I’ll address older children in the following posts.

How to approach diet in a brain-injured baby

My advice for anyone trying to feed a baby or young child with CP is the dietary approach must be nutritious and (if you’ve skipped the information above) focus on addressing inflammation.

I believe ABR helps restore the balance in the immune system. This is evidenced by the fact that children in the ABR programme start thriving in metabolic, structural and neurological ways. ABR ‘gives’ to the system and the system can then take this input and remodel the entire body.

As I have honed my feeding skills, this theme came up again and again. Settle the inflammation with diet and it will aid all the other therapies. I wish I knew this when I was feeding Emma chocolate and processed porridge. This really is a letter to my younger self so the information is now out there!

Feeding babies with Cerebral Palsy

The benefits of natural birth

We know that our major defence system is due to the balance of good bacteria (microflora) in our gut (we call this balance the microbiome). We also know that babies are born with no bacteria in their gut and that whoever touches the child first as it is born (either through the birth canal of the mum during a normal delivery or the hands of a surgeon during a C-section) will pass on the bacteria to colonise this baby’s gut.

We all want this colonisation to happen from the mum, because a person’s bacteria (microbiome) fits together with his/her genetic code (genome) to form the whole person. Bacteria from someone else is not ideal (this is a bigger topic but if you want to know more, I suggest you watch this excellent Ted talk). However, I know the choice of birth is beyond the control of many of us and in our case, Emma was born via an emergency C-section. This means tackling Emma’s micobiome has been particularly important to me.

The first food

Breast milk is best. This is a battle that anyone who has attempted feeding brain-injured or premature babies will attest to, as someone said to me: “there will be blood on the dance floor”. But your child will benefit in a multitude of ways from the mother’s milk – this milk even has its own microflora that will go to the baby from the mum (hello happy bacteria!). Breastfeed for as long as possible, but also think of yourself as the source of the food. Make sure you are eating an anti-inflammatory diet and that your lifestyle is healthy. There are things a mum can do to increase the anti-inflammatory quality of her breast milk.
The advice I’d give to myself

If I could turn back the clock, I would have visited a integrative/naturopath/functional medicine- trained physician to help guide me with this. I would specifically have:

1. Checked myself for food intolerances and made sure I cut out foods that I react to. I would have eaten an anti-inflammatory diet (see below). I might also have had a stool sample tested to make sure I have enough of the good bacteria in my gut and that there were no imbalances that could lead to problems in the future.

2. Checked my mineral and vitamin levels and made sure I supplemented where needed in order to increase the quality of the breast milk. (Common shortages these days include: Vit D3, selenium, zinc, magnesium, calcium and iodine and Omega 3 oils.) Again, if your diet is correct, the need for supplements is less.

3. Focused on gut health by taking a good probiotic supplement formulated for babies and children. I suffered with IBS when Emma was small and now I benefit so much from these bacteria.

4. Addressed fatigue, stress and cortisol levels. (This is a big topic for another post – apologies, I know I say this a great deal, but I don’t want to stint on what I am sharing with you – but there are things one can do to address fatigue, such as light exercise, learning to ask for help and going to bed early or prioritising rest to benefit from the natural healing that happens during sleep. Caring for a young child is a family affair with as many hands on deck as possible. Nobody should be left on their own with no household support.)

An anti-inflammatory diet guide

An anti-inflammatory diet means a plant-based diet (fruit and vegetable) with some protein at every meal. The protein portion should be about the size of your palm and from a good source – look for ethically produced protein. Vitally important is including lots of good fats (saturated fat, olive oil and Omega 3) but cut out Omega 6 oils (oils from most seed oils, margarine and canola) because these are inflammatory. Use plants as your source of starch and avoid grains (there are many reasons why) – and eat no added sugar. In fact, if you have energy to do this, the paleo-auto-immune diet is probably the best way to eat anti-inflammatory because it helps you figure out what works for your body. If you are starting from scratch, this Paleomom blog is a good resource.

However, please don’t make big dietary changes when you are breastfeeding without the supportof a qualified physician.

There is increasing evidence of the ‘goodness’ of breast milk and at the same time there are increases in the questions around the ‘goodness’ of formula. I also know that breastfeeding is a major guilt-trip for many moms, because no matter how hard they tried, they just could not get it going. To those of you fighting this battle, take heart. A very good second best option is to get hold of donor milk from a breastmilk bank. While we don’t know how the naturally occuring bacteria in breastmilk will be affected with giving previously frozen and pasteurised breastmilk, we are after the other many beneficial attributes of human milk. Again its easy to add probiotics to donor or formula milk. (The best way to find out what probiotic is needed, is to analyse the stools of the child to assess the balance of the microbiome and supplement as needed.) The high levels of Omega threes, prebiotics (the food for the good bacteria) and not to forget infection-fighting anti-bodies, essential amino acids amongst many things make it the ideal milk for brain injured humans. I found this story about donor breastmilk for an older baby particularly inspiring. Its important to think of the microbiome as a garden than needs to be carefully cultivated and tended. This is a long-term effort.

Emma was born via c-section and I weaned her onto ordinary supermarket-bought formula when she was 10 months old. Looking back now, there was so much more I could have done for her.
There may be readers who have done the same as I and feel fretful as they read this. To this I say, don’t worry. Let’s catch that train at the next station which is weaning and early feeding. I will talk more about this in my next post.

Nothing is impossible. Every chain is breakable. Remember, that you and your baby are one being.
Und wenn ich für dich fliegen muss, krieg’ ich dass irgendwie hin.”

(German song: “And even if I have to fly for you, I will somehow.“)

Matthias Schweighoefer Fliegen

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s