Noah's new diet and some good news!

My grieving period following hearing the "bad news" about Noah and his diagnosis of Leukodystrophy, in its worst form lasted about 4 days. One morning I was in my car pulled over in the park by our house crying and trying to call psychiatrists hoping for a miracle pill to erase the way I was feeling, and was doing what I did best (or worst) in those days, googling ... I came across a site which talked about diet and it's effect on the brain. All the sudden it clicked in my brain, I can't change anything if all I do is continue to cry and sleep. I need to fight this disease and we have to win!! 

I learned a lot from my aunt Randy when she was diagnosed with breast cancer in 2001 and her subsequent treatment and the diet she still follows strictly to this day. I started there ... 

Step 1; Increase Noah's fatty acid intake. Leukodystrophy is abnormal white matter, which in Noah's case means his Myelin was disappearing. The Myelin is the fatty tissue which protects the nerves. So without it would be similar to stripping the rubber off of your iphone charger and then trying to charge your phone. I googled "omega 3's for toddlers" and some fish oil drops for babies came up and could be purchased at a vitamin shoppe only blocks away. I wiped my tears and headed there. I purchased a couple bottles of the fish oil. Next stop, whole foods (whole paycheck!) Jason and I stocked up on all things for brain health including but not limited to the following: 

Flax seeds

Walnuts

Mung, black, and lentil beans

Chia seeds

Almond and peanut butter

Flax milk

Almond milk

Cow milk w/dha

Yogurt

Honey 

Avocados, sweet potatoes, celery, kale

Strawberries, blueberries and bananas

Acai berry

Edamame

Wheat germ

Kefir

Curry

The good news is many of these things have been a part of Noah's diet forever, but we had many new items. 

Noah's teacher, Chaya, had also purchased some things for Noah since he likely wouldn't be able to eat the daily snacks anymore. She got him a dha milk, flax seeds, organic apple sauce and chopped spinach. We love her! 

Step 2; No more refined sugars for Noah

Sugar starves your brain and fuels inflammation. Refined sugar is a fast-absorbing carbohydrate and is one of the strongest irritants of the nervous system; it deteriorates and eventually produces a host of conditions. On top of that there are a million and one reasons why refined sugar is poison to the body, but I will try not to be preachy here. ;) 

 

Bottom Line: The only organ that can metabolize fructose is the liver. When we eat a lot of fructose, many things in the body start to go wrong... 

Step 3; return ALL of the dairy which we just purchased

I read this the night after we made our whole foods run: 

Food that damages the myelin and nervous system functions:

Harmful or saturated fats: avoid at all costs as fried sausages, maximally reduce red meat, cow's milk and derivatives.

So, I texted Noah's teacher immediately. I think it was after 11pm ... Sorry, Chaya! "Stop giving Noah Milk!" Everything right now seems like an emergency. I don't want to cause any more damage to his fragile little still-growing brain. The next day I returned all of the milk products that we had in our house (within reason.) I used that "credit" to replace his milk, yogurt, butter, etc. with:

Vegan butter 

Goat and sheep yogurt (the soy, almond and coconut yogurts have sugar! Oy) 

Vegan Mac and cheese

More almond and flax milk (unsweetened)

Coconut milk (unsweetened)

More fruits 

Step 4; Return all of the days previous goat, sheep and fish oil products. Oyyy

I got a call from the scheduler for our metabolic specialist and she said she needed to change our much anticipated appointment from the 5th of August to the 19th because they weren't going to get the bloodwork back in time. I was so upset. I told her I needed help with his diet and basically just wanted answers. She put me right through to the metabolic neurologist. This is pretty hard to do, just chat with your specialist on a whim. I was pretty excited. He told me that what they think Noah has is a proxisomal disorder and that was the blood test they were waiting on and that it was taking longer than expected. I told him about our recent diet changes, no dairy, no refined sugar, side of omega 3's and other short chain fatty acids. He told me it's all fine and in fact, proxisomal disorder reacts badly to phytanic acids. He said some patients respond to the removal of dairy from the diet for that reason. I was thrilled! We did some actual useful googling! He was cautious though, saying that it doesn't always work and we don't know if he has that disorder. 

I went home to research the phytanic acids only to find they're in goat, sheep, cow, and FATTY FISH!!! So the unopened  fish oils, goat and sheep yogurts, kefir, milk all went back to the store. I feel bad because they have to destroy them, but better that than "destroy" my little love! 

So today I receive a call from the metabolic specialist and he says they got the blood work back and Noah does NOT have peroxisomal disorder! Finally, a glimmer of hope in all of this and some actual information! I was so happy I almost cried! I told him that it was nice to get some happy news and he said he called as soon as the results came to his desk! I have never met this guy, but I think I love him! 

 Prayer to recite upon -Hearing Good News:

Barukh atah Adonai Eloheinu melekh ha'olam hatov v'ha'meitiv. Blessed are You, Lord our God, Ruler of the Universe, who is good and causes good.

We're celebrating tonight with a piece of wild salmon!!