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Tuesday, December 12, 2006

Nutrition and the Brain Damaged Child: Part I

This one is for Jacqui and Moo.

Sometimes I think that there is so much to say about this I get overwhelmed. But at other times I know too it comes understanding and practicing a few important principles. I will share those first. I have a long background in studying nutrition because it has fascinated me from an early age. However, most of these principles and especially as applied to Ellie I learned from Linda Scotson at Advance. I will tell you the principles and then describe our journey and what has worked for us. Disclaimer: This is a cautionary tale. Though I believe in the basic principles wholeheartedly because they have worked for us and because they are logical, every child is different. A person’s blood type definitely comes into play in terms of what they should eat as well.

This post pertains to post NICU experiences. Ellie survived her 133 days in the NICU first on Total Perenteral Nutrition (TPN) through a PICC Line and then on breast milk. When Ellie got home we had her on breast milk for as long as we could. I pumped for Ellie for 19 months and my dear friend Kate donated her extra milk for over one year. After that we tried the nutritionist/doctor recommended diet, which was a disaster. Then we found Linda Scotson and went to England to go to Advance which is when we started changing Ellie’s diet and her health has been improving dramatically ever since.

Basic Principles Necessary for Understanding Nutrition and the Brain Damaged Child:

1. The Circulatory and Respiratory System and sphincters are weaker in a child with brain damage. When the brain is injured in any way the body sends most of its nutrients and oxygen to it first. The body instinctively protects its brain. When this happens to someone in infancy or in premature infancy like Ellie, other significant parts of the body become much weaker, the diaphragm and all the sphincters especially. This is important to understand as it dictates how well the child will breath, saturate their blood with oxygen, digest food, and heal.

2. Brain damaged babies and children have very few reserves. Reserve means a person’s ability to fight disease and infection. If you have a lot of reserves you get over colds quickly without too much taxation on your body. Elderly people often have low reserves and that is why they are fed broths and things easy to digest when they are sick. This same logic is not applied to babies and children.

3. The Twinkie Rule: Eat/ingest food that gives maximum nutritional benefit to the body while using the least of the body’s nutrients and energy to digest and metabolize the food. It is especially important for people with low reserves to eat things that give them the maximum amount of nutrition that takes their body the least amount of nutrients to digest. This is what I call the Twinkie Rule. When you eat a Twinkie you get nothing from it nutritionally but you use up nutrients and body fluids to process / digest that Twinkie. So your body is actually depleted / has less nutrients in it after eating a Twinkie than before. If you have a lot of reserves like most healthy people, you will be fine having the odd Twinkie here and there. But have you ever noticed how if you are run down and you have sugar you will get a cold or virus?

When I feed Ellie I want her body to get the maximum nutrients with the least expenditure of her energy to do so. The medical paradigm nutritionists had Ellie on a high fat and high sugar formula, basically a Twinkie diet with a horrible synthetic multivitamin thrown in to *beef her up. They did beef her up to some degree but to do this we had to get Ellie a J-tube, which fed the food directly into her intestines so she could not vomit it up. The rich diet made her sick as a dog every single day for one year. She had horrible gas from this and we were venting her 30-50 times per day – i.e. meaning opening up her gastrostomy tube and letting the gas escape her stomach. The j-tube was also really painful for Ellie and she woke up 7 times per night in agony that nothing would fix. We spent many whole nights rocking her, putting her on her stomach to relieve the pain, venting her, trying to calm and sing to her. She felt awful and we were exhausted. No one was sleeping.

It is important to note that during this time Ellie did gain weight as you can see by her arms in this picture. However, she did not gain inches in height or head circumference and had a definite lack of developmental progress in general. Why? Because she was sick, tired, gray of pallor, exhausted, gassy, all the time on this diet. We truly gave the nutritionist/doctor/big huge multinational companies pushing synthetic, surprisingly profitable baby food down our throats our best shot. All along the doctors were pushing us to get a
Nissen Fundoplication, which would make her permanently unable to burp or vomit as subject her to another surgery. It would also have made it very difficult for her to ever eat by mouth. Something the doctors had decided for us that she would never do. And they were completely wrong on that one. This is what galls me about the medical paradigm. It says if something is not getting better to manage with medication or “nutrition” the next step is surgery. The food makes the child sick so make it so the child can’t vomit it up. This is the medical paradigm for you. Is this totally BATSHIT INSANE, or is it just me?

Instead of saying, gee maybe the food we are feeding her is not working and we shouldn’t we change that, they say, let’s surgically close off her stomach and force the food into her. Why listen to what her body is telling us? We are nutritionist and doctors we know better what to do than the body does. The nutritionist would come to our home and ask why we were not getting enough volume into her. She would eye us suspiciously like we were purposefully starving our child. I thought she was going to call child services on us eventhough Ellie’s weight for her size was ok. But when her weight was compared to uninjured non premature birth babies it wasn't even close to the curve.

I understand the doctors and nutritionists have true concern for kids with such injuries and want to ensure they are getting the best nutrition. All you hear in the NICU is how your kid gaining weight and getting bigger will take care of all things. And in part, it's true the bigger they get the healthier they get. What I am saying is that sometimes practitioners of the medical paradigm can't see the woods through the trees. They get a little dogmatic about it versus looking at the child. Look at the baby was the first rule we learned in the NICU from dear Dynio.

But I digress. This nutritionist wanted us to feed her 900 cc’s of this mix of Neocate and Ploycose and MCT Oil per day. We tried but between the vomiting and pain and venting we were unable to get the volume in. At this time Ellie was on a 23 hour per day continuous drip feeds. Let me tell you that carrying around a Kangaroo pump whenever you need to move your baby is tough as well as the stares. Being fed all the time also does not allow the body to rest and do the maintenance it needs to when it is not digesting at night.

4. Sleep is critical for healing the brain and body. Sleep is so important to protect in anyone but especially a person healing from brain damage. In sleep the body works to heal itself, replenish it’s supplies of bile and other important fluids. REM sleep is the time when memories from the day are permanently incorporated into the neuro net and become things learned and in babies and children developmental milestones. Rich, sugary foods can interrupt sleep because the body is too acidic and reflux occurs. Blood sugar levels rise and crash and are harder to regulate when the body has ingested sugar which can also interrupt sleep.

5. All cells in the body build up acid. Uninjured typical bodied people get rid of this acid by moving around. In someone who does not move much the acid builds up in their cells and they become very acidic. Pair this with the weak sphincter muscles and slow motility and you have a recipe for severe reflux or GERD and eventually esophageal cancer and a very hard situation for the person. A low acid, high alkaline diet is really important to counteract all of this. The medial paradigm diet is high acid with its sugars and way too rich with its fats. I will go into the different food groups to cover acid and alkaline foods.

6. *Brain damaged children with CP are better off being on the thin side. Any extra weight is very hard on a body with an underdeveloped circulatory system and muscle weakness due to neurological issues. All children with brain damage especially those whose brain was damaged by an anoxic event – meaning a lack of oxygen have a weakened circulatory system. The therapy we are doing with Ellie each day works on strengthening her circulatory system as I have described in other posts. But there was this need on the medical nutritionists’ part to put some meat on Ellie’s bones at all costs. Ellie was skin and bones for a time after I took her off the medical diet. But now as you can see she is much healthier. Extra weight on a person with neurological problems just taxes the already low energy reserves of the person even more. There is a fine line between being at the right weight and over or under weight. When you feed a child in this predicament whole and simple foods and they are get enough sleep the body will find it’s ideal weight for the state it is in at the moment. We saw this with Ellie along with greater growth and developmental milestones, less illness, way, WAY less vomiting and rosy cheeks.

7. Proper food combining is essential. A friend of mine always used to say, “You are only as old as your enzymes.” This is in fact, a good point. Each type of whole food you eat takes a different enzyme to digest. Fruit takes one kind of enzyme to digest it and vegetables take another. Even within the fruit food group, melons for example put an extra load on the body to digest so they should not be combined with anything. Meats take different enzymes than carbohydrates. Eating the two together is particularly hard on the digestion. A great book that goes in depth about this is Healing with Whole Foods: Oriental Traditions and Modern Nutrition by Paul Pitchford. We have seen a huge decrease in Ellie’s vomiting and reflux due to combining the right foods. Of course this ties into the Twinkie Rule.

My Reference Books:
Prescription for Nutritional Healing by Phyllis A. Balch, cnc and James F. Balch, MD
Healing with Whole Foods by Paul Pitchford
The Body’s Many Cries for Water by Fereydoon Batamanghelidj, M.D.
The Rainbow Diet by Gabriel Cousens, MD
Herbs and Magic Healers by Paul Twitchell.

If you are new to learning about nutrition reading the first chapters of Nutrition Healing will run you through many of the basic concepts. Healing with Whole Foods discusses lifestyle choices that affect the way your body assimilates food as well as information on food combining and recipes.

Part II will include details of the diet that has helped Ellie thrive, food combining and more.


Marc said...

Great diet information. Good refresher as we are reworking our family diet. I'll use some of these resource books you suggest as we own two of them already.
You reiterate the strong argument for medical reform, particularly with re to diet. Hopefully we see some real movement in our lifetime in Western medicine. What a disaster it has been for many with its archaic views propagated only due to a profit motive. Wonderful that you are discovering a much more enlightened approach. Keep teaching us!

Anonymous said...

Thanks Kathryn. Looks like I've got some reading to do. But it all makes sense. Look forward to reading part 2! (hehe - definitely no pressure as it sounds like you've really got your hands full from the next post!)

Anonymous said...

I so relate to your post above about your muse... I read this post about nutrition last night and then on my travels this morning had a thought but couldn't comment and now I can... poof! it's gone.

But I can still remember a question I had so my muse gets 50% today, LOL. What's your take on food supplements for people with CP? I'm guessing not a fan of them but I was curious.

Kathryn said...

Hi Emma, Very cool that you read my blog now and then. In answer to the supplements question the answer is - it depends upon what it is. We have to be really careful with Ellie because she is low body weight and low muscle tone. That said I have her on a multivitamin that seems to be working out so far (and we have tried many, most made her sick- poor baba suffering mama's trials) it's called Kinder Love Children's Multivitamin by Floradix. It's a liquid and needs to be refrigerated. I tried Ellie on a powdered one for kids I found at Whole Foods and saw a lot of it in her diaper...). The Calcium Magnesium Supplement she is on is milk free and it's by Life Time. It's the one for Kids. I give her that at night when she has an empty stomach with water. It's tricky trying to get these things in her so that her foods and meds don't compete for absorbtion.

And that is the key, absorbtion. Calcium for example will not absorb into the blood stream in the presence of vitamin c.

I am not anti supplements per se - there's that word again. But I am anti synthetic crap many manufacturers put in their vitamins.

Here are some heuretics about vitamins:
Get the least processed ones you can. The most processed are tablets. Avoid those - they never absorb. A good test is to take one and break it in half and put it in a glass of water. Wait 15 minute and see if it has broken down at all. If it hasn't it isn't breaking down much in your body either. Next best are capsules. And the best are liquids like tinctures or even oils.

We have been giving Ellie Flax oil for a long time now for the omega threes. She used to have really dry scalp and it's a lot better now. I take Udo's Choice Oil every day. I take a calcium magnesium supplement every night.

Regarding Magnesium - if we give Ellie too much she gets even floppier. It's a muscle relaxant. This is why I give it to her at night in the calcium supplement hoping it will allow her muscles a little break from the spasticity in her sleep. But I tried giving her an 1/8th of my adult cal mag sup and her hypotonia was noticeably worse. I have not noticed this on the current cal/mag supp as described above.

Another Heuristic us that everyone's body and what it needs and the way it metabolizes nutrients is unique.I really hate hard and fast rules about people with CP and nutrition. When I say principles I mean guidelines.

I somewhat fluffy sounding heuristic is that we need to listen to our own bodies. They tell us a lot. Regarding Ellie, I have to watch her very closely and track what I give her because she can't tell me what she is feeling most of the time in words. I do believe in the body's (CP not withstanding)innate intelligence.I also think the universe answers our questions if we are awake enough to hear/see/feel/know the answers. If you are really drawn to taking a supplement because you asked for healing or help here,the universe will answer you in many ways.

Last heuristic: proceed with caution. We try things cautiously with Ellie and start very, very slowly and with small doses.

Sorry to ramble, nutrition is one of my biggest interests and has been for most of my life for some odd reason...

Hope you are doing great!

Kathryn said...

Sorry that should have been heuristics...typos suck!

And I meant to say that if you are really drawn to taking a supplement and people keep telling you about one or you keep getting the message about one. Research it and if it passes the logic test, try it sparingly.

This is what I get for writing such a long response! typossssssss.

Anonymous said...

Wow! I'm really looking forward to your next post. It sounds as if you are on the right track! Everyone tells me how thin Little D is (spastic quad. CP) and it really bothers me, like I am depriving him of food!

I'll be back with bells on. Thanks for the great blog!

xo, Dani

Anonymous said...

Wow! I'm really looking forward to your next post. It sounds as if you are on the right track! Everyone tells me how thin Little D is (spastic quad. CP) and it really bothers me, like I am depriving him of food!

I'll be back with bells on. Thanks for the great blog!

xo, Dani

Anonymous said...

Remembered what I wanted to say (yeah, lets pretend it didn't take me several days, LOL). I too have been told that lighter is better for CP - and I do have to say that I am now roughly 60lb overweight I really struggle a lot more to get around. I am told and my parents were also told this when I was younger, that it affects your centre of gravity which is bad for balance and which in my case is rubbish anyway. Equally I have the comment made to me several times by well meaning people that "no one expects you to be thin Emma, you use a wheelchair". Finally three years ago I lost roughly 30lb which at that point put me at roughly my correct height/weight ratio (a little bit high). I was at that point being followed by a GP who was also disabled - what I think is CP but never actually knew - he warned me that if I lost too much weight I would find that my risk of pressure sores and such wounds would increase as I had no padding on my bony bits. My earlier supplement question was because I take two which were recommended by my GP (Cranberry because I have had issues with recurrent UTI's which took three months of once daily abx to clear and Evening Primrose Oil for killer PMS/Depression) and it wasn't something you touched on so I was curious.