Eating That Elephant

“The only way to eat an elephant is one bite at a time” — this has become one of my favorite sayings, not just because it is so applicable to parenting a child (now a teen!) with health issues, but because the absurdity reminds me to lighten up a little.

For those that don’t know me, I’m the mom of a teenage son that has health issues. He has struggled with his health and mental health for years, and we have slowly been peeling layers of the onion off to figure out exactly what is underneath and build up strategies to help him. First the diagnosis was anxiety and mood disorder; then extreme fatigue and adrenal insufficiency; then we discovered extreme glutamate sensitivity and were able to alleviate many symptoms with strict dietary changes, but wanted to know why.

Finally chronic fatigue syndrome with possible cardiac issues down the road were added into the mix. That pointed us in a direction of genetic malfunctions. We “bit the bullet” and did the Yasko genetic panel (http://www.holisticheal.com/media/downloads/guide-to-nutrigenomic-testing.pdf), and think we have finally found the “core” (the doctors helped, and my husband is a great support but if I can toot my own horn for a moment…I have worked daily on this for years). Everything fits in the puzzle. Finally, it’s all explained.

I was going to write that our son has been doing really well recently, but it seems that every time I do that, I jinx it and we have a really rough time for a while, so I won’t 🙂 It’s up and down, but he can function so much better than a few years ago, and for that we are very grateful. The bad news is that it’s genetic, he has it for life, and we might already be doing a good bit of what we can to manage it. It’s unclear how much it will impact his life on a daily basis as time goes on. But in some ways the fact that it’s genetic is good news…because we can completely let go of all the blame that subtly comes with any “out of the norm” situation…the cause is not poor parenting, or poor moral character (which I knew, but it’s nice to *know*, you know?

He’s on a combination of about a couple dozen supplements and one medication (I have added/removed things almost weekly for the past three years and kept notes as to what the effects were for him since that’s all I had to go on). He still can’t eat most ingredients with even trace amounts of glutamate without his mood and energy plummeting, which is hard for a teen. But as I didn’t say earlier, overall he’s doing very well considering our road.

So, why am I telling you all that? I’ve decided to rename this blog and post more about what I’ve been learning. I hope this can be an accessible resource for any parents struggling with children with chronic health issues, and particularly to anyone that wants to eliminate glutamates/MSG/excitotoxins from their diet, which is and continues to be our lifesaving tool. Also, I’d like to hear what you are learning also, and use this blog to spur discussion.

So I hope you will come along on the journey with me!  Let me know if this is useful for you, what questions you have, what areas you suggest I look into more. I’m an extreme extrovert, so the more thoughtful conversation we get going, the more I’ll be inspired to write :).

I’ve been struggling with my health for weeks and it seems to be getting worse; my ability to explain it is slowly leaking away.  I’ve been trying to come up with an analogy of what my brain feels like. Sometimes, the words come out garbled, even reading a line of text, and I’m so distracted that if I don’t watch out I’m off on another topic entirely.

How does one describe having no energy but yet not being tired? Feeling “wrong” but not feeling sick? Especially when one’s brain is the problem in the first place and expected to do that thinking.

What I do know is that the internal feelings seems eerily connected and similar to the external symptoms that my son has struggled with for years. I find myself not wanting to get off the couch and attend to basic things, and wonder if that is what he feels like. I reach for thoughts that are no longer there and try to force out words that slip away like eels or change into the wrong words, and I recall all the times where at his worst, he wouldn’t even speak. A song with static plays while I try to read text, and I want to scream from the chaos.   I recall his reaction to me talking too much – he screams at me to shut up.  I’m 40, though, so I don’t.

The best I have come up with is the feeling of driving on icy roads. At first, the snow fell gently and lightly; it got in the way of my thinking but I could brush it aside, and normal operations of my brain felt like driving on soft snow that fell on dry ground. There is a surreal feeling; things aren’t quite the way I’m used to, but it’s fine, even pretty. In fact I’ve taken substances that make me feel this way, only this time I’ve not had anything to drink and yet feel a bit as if I have. Like driving on snow, everything works, you just take it a bit slower and try to enjoy the scenery. Most of the time, my mental road all feels fine and working. Then I put on the brake and for a second it just doesn’t do anything. I think, “I did put on the brake, right?” and then suddenly I feel myself slowing, back in control, wondering if anything unusual actually happened. When driving on snow, you pay more attention – slowly you realize all the times where the tires slip, just a little, but you don’t know for sure. Maybe it is your imagination…it feels fine right now.

Lately, though the mental roads are getting icy and slick. At times my brain can’t hold a thought from the sink to the fridge. Oh, I’m used to this – but usually it’s because I am driving too fast. I’m thinking of 10 things, and what to put in my tea is lowest of the list and so it takes a while for the gears to click in and bring it to the surface. But when my only task in the moment is making tea, I don’t expect black ice between the sink and the fridge. My coordination is off, and I need a wider road during those times. I reach for something and my hands don’t quite land where I put them. I look at the writing on my three out of four vials of spit for the lab test, and I see the writing decline over the course of the day. Yet, still, I tell myself it’s not a big deal – I probably just rested that one with the pretty handwriting on the table. Until I try that with the fourth, and am shaken when my name comes out stilted and jumpy.

I live in Colorado and the weather here varies not just from month to month, but from day to day and hour to hour. I should be used to this but I’m tired of having Colorado weather in my head. Earlier this week, my mental roads were very snowpacked and icy, and I was starting to panic. I laid down to read, and fell asleep. Though it took me an hour to clear the sleep from my head, I then had 5 hours of perfect clarity – exactly like a typical Colorado winter day once the snow has started to melt because the sun has come out. Then after a stressful situation, I could feel the snow in my head start to fall, like a blanket, obscuring everything I was trying to think about and even making my hands slippery and awkward on the keyboard.

Today has dawned sunny and bright, but with high winds – both literally and figuratively. The clouds on the horizon are fuzzy and tenuous, but the clouds in my head are starting to billow and threaten. It will be interesting to see what weather the future brings.

Our family made sushi (California Roll) for dinner tonight. It was so much fun! Here are some links in case you want to try it.

For the recipe we used the one from Good Eats –

http://www.foodnetwork.com/food/recipes/recipe/0,1977,FOOD_9936_31391,00.html

But before we were ready to try inside out rolls, we did normal rolls, using the same ingredients, like this:
http://sushiday.com/archives/2006/10/26/how-to-roll-maki-sushi/ Except that the way I had learned you only cover 1/2 of the nori with rice, not all but a little.

Then we did the inside-out California rolls, using the 1/2 sheet of nori like Good Eats says, and it worked pretty well – some of them fell apart. You have to be super careful when you cut them.

Then I got ambitious and made Caterpillar roll (but without the unagi – and still using the 1/2 sheet of nori) like this: http://sushiday.com/archives/2006/12/23/caterpillar-roll/ . They were the best IMO.

Lastly, I made miso soup with a bit of Thai fish sauce (instead of the fish “tea bag”), miso, and a bit of torn up nori. (Ratio – 2.5 cups water; 1.5 tbsp miso; 1 tablespoon fish sauce).

We’ve decided we’ll make Sunday into a regular date to make dinner together as a family…next week, homemade pizza with the bread machine.

I never thought I would say this, but I had kale for dinner last night and it was delicious.

As a child, I was forced to eat kale and I hated it. Kale was out-hated only by okra (which I have to try again, though I’m told it is a delicacy). I lived on a large community (what you would call a “commune”) where most of our food was grown by hand, and only a small amount of necessities were purchased with the small pot of community money. I can remember toilet paper being rationed to a certain number of rolls per household per week, and bananas being only given to children under 2, and only 1 per week at that.

Kale was good for me, I was told, and since it was one of the few vegies that would grow *in the snow*, it came at a time when nutrition was especially low. I had heard tales of “wheat berry winter” where the mills had broken down, there was no money to fix them, and all there was to eat were wheat berries cooked like cereal – perhaps a little salt if you had stored some away – but fortunately I didn’t live there during that time!

Luckily I actually didn’t mind the bland flavor of soybeans, which were the mainstay of our diet; most children detested them. Pinto beans, more of a rarity, I didn’t care for and would often eat as pills, swallowing each one whole, or I would surreptitiously feed them to the cat waiting under the table, who couldn’t afford to be picky either. But kale, there really is no way to swallow whole. I clearly remember gagging down this horribly bitter tasting leaf which I was convinced really was a noxious weed. If we had vinegar, sometimes I could mask the taste with that, but as I grew older and we moved off the community, I resolved to leave kale and pinto beans behind me as a part of my past. I would explain to friends in college that it wasn’t that I didn’t like beans – I had simply already eaten my lifetime supply.

So I was quite surprised when, over at a friends house, I observed her and her 3 year old daughter not only enjoying but fighting over (complete with dualing forks) sauteed kale. Eating kale is definitely not something I would put past this vegetarian, ultra-nutrition oriented friend, but her daughter? I tentatively asked to try a bite – whoever came up with the strategy of not giving your children food that you want them to have, and eating it all yourself with relish, must have been a genius as it certainly worked on me.

It must have some nutrient I’m in need of, because that one bite (which I admitted was quite good) got a hold of me. I started craving more and bought my own bunch. Of course, once it was in my kitchen, all of my doubts returned – it still was that squeaky, beautifully dark-colored leaf that I had detested for so long and admired as a pretty addition to a plate but not actually considered food. After several days of considering it and opting for the lettuce instead, I finally tried it, cooked in some bacon fat and lots of apple cider vinegar. It was … not bad, I admitted. The next day I tried microwaving it, as I only had a few minutes. That was a horrible mistake – I can only guess that it was the metal content caused it to spark and shrivel. Finally on my third try, it came out wonderful. Delicious. Here’s what I did.

Lisa Rediscovers Kale

Wash kale and tear leaves from stalks into bite-sized pieces. Trim ends off stalks, and slice into very thin disks. Melt a pat of butter in a covered pan. Add kale and stalk disks, 1/2 cup of water, and steam for about 10 minutes or until disks lose their bitterness and kale is starting to get soft. Meanwhile, chop about 1/2 cup red or sweet yellow onion and a bit of garlic. Push kale to sides, and add onion and garlic with another pat of butter to center of pan and soften to transparent.

Taste, and add salt, vinegar, or other ingredients as needed. (At the last minute, I added some sliced breakfast sausage that I had leftover so that it was made into a meal – it went surpisingly well together!)

The Straw Trick

My son takes quite a few supplements despite having a very strong gag reflex. Here is a trick that he figured out that makes taking pills so much easier, as well as some other ways of getting in supplements.

Find a big, fat straw – I got them from Amazon (here’s a direct link) but my MIL has straws that were used to hold up flower stems and they work OK – check a florist. (I don’t know what kind of plastic they are, and they crack quickly, so if the trick works, it’s worth a pack of straws). Sometimes you can get fat straws from a quick-mart type place in a drink. We wash and reuse ours for quite a while.

Put the straw in juice (we use a tall, skinny glass), and put a capsule into the straw. Try it yourself first. Put the pill all the way down the straw – most pills float but keep the straw firmly touching the glass. The child can practice with small candies, but they must be slippery – no chewables or tablets, even if they taste good! (This is important at first, because if the pill gets stuck at the back of the throat, it feels strange and the child may not want to try anything else for a while.

Now, simply suck up juice and pill together. The straw puts it right on the perfect place of the tongue for swallowing. Some people are concerned the child might choke, but our mouths are trained from an early age to swallow whatever the straw puts there.

Why must it be a capsule to start? These are so much more slippery than tablets plus they don’t have any flavor. Softgels work well too, but do often have flavor, so try these after capsules. There are three ways to deal with tablets:

• If the child takes other large capsules (for example 1g Vit C) we open it up, and stuff a small tablet inside it. Because the capsule has powder in it, there is a little extra space, plus there is more overlap between the two halves of the capsule than is truly needed so the capsule just gets a bit longer. This works well for many medications, as the pills are fairly small, and often have a “split line” so you can easily break them into halves.
• If a larger pill is not a capsule, I cut it in half if needed (as long as it isn’t time release), and I put it into an empty capsule (you can dump out one of a less-expensive supplement to to see if the trick works). Empty capsules can be saved from when you make fruit smoothies, or can be purchased in different sizes from most health food stores and vitamin shops.
• Lastly, some children, especially after using this method a while, can take capsules straight into the straw. (We have a B complex that doesn’t fit in a capsule that my son now takes this way). What I do with most tablets is go to a health food / vitamin store and look for empty capsules. put the straw in juice, the pill down the straw, and suck it up into the mouth. Find a capsule that will fit your pill.

I’ve started buying everything I can in capsules, but for those that I can’t I have mastered the art of squeezing in lots of different things into capsules.

Other Tricks

Splitting capsules: If you have two capsules the same size (one might be empty), you can split them into 2 doses fairly easily by opening the capsule and distributing the powder between the two halves, and then putting an empty half capsule on each end. You can repeat for smaller splits, though you will use a lot of empties. It’s not exact, of course, but many things absorb better in multiple doses.

Distraction: I find my son takes his supplements more easily if he is watching TV and I put the straw under his mouth (once he knows the trick of course) because he is not thinking about it or tensing up his body. (Ditto with not-so-great tasting fruit shakes).

Fruit smoothies are a great way to hide supplements. If your supplements taste bad, you’ll want to use frozen fruit because it numbs the taste buds. (However, an interesting note is that our taste buds often don’t object to supplements we really need – e.g., one way my practitioner tests if I need zinc is to put some on my tongue (a special formulation) – if it tastes horrible you don’t need zinc!). I can’t stand the taste of fish oil in smoothies, but my son doesn’t hardly notice.Overripe bananas are great for sweetening smoothies – slice them into a freezer bag whenever they are spotted brown and no-one wants to eat them.

It’s possible to make smoothies in a blender, of course, but if you have a hand (immersion) blender they make fabulous smoothies. My basic recipe is:

• 1/2 cup whole yogurt on the bottom
• a few chunks frozen banana
• a handful of frozen berries, peaches, or other fruit
• supplements (e.g., powders or opened capsules, liquid fish oil, whey protein powder, magnesium drink mix, Vitamin C, etc)
• Other foods you want to hide (raw tofu, raw egg yolk, frozen cubes of vegies)
• Enough milk (if supplements are too sour) or juice (if it is too bland) to make it blend well

Blend thoroughly, stopping every few seconds to get the air bubble out and adding a little more liquid if needed. I’ll add a little sweetener sometimes at the end after taste testing (or more banana). Sometimes a bit of lemon juice is helpful to make it more “intense” – though it will require more sweetener, it will cover more other tastes as well.

When I use an immersion blender, the consistency is almost like soft-serve ice cream and can be eaten with a spoon.

If fruit shakes are used for “dosed” supplements, it can get tricky if you make too much fruit shake. In this case you might make the fruit shake for the family, and add the child’s supplements after most has been poured out. For non “dosed” amounts, where you just want to get some nutrition in, you can freeze extra fruit shake into cubes, and re-blend them later.

Enzymes: Enzymes shouldn’t be put in fruit shakes because they quickly get activated by the liquid and make the whole thing taste awful. But, they can be mixed into anything fatty such as nut butter or chocolate as fat doesn’t activate them. Or you can use the Straw Trick. There are more tricks on enzymestuff.com for enzymes as well as lots of information.