Archive for the ‘Special Needs’ Category.

Eating That Elephant…one bite at a time

“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 :).

“The Straw Trick” and other pill-taking tricks

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).

Frozen Fruit Smoothies

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.

Just as they are

One of the biggest concepts I’ve been pondering on lately  is the idea that children are great just as they are, and how to integrate this idea with helping them grow at the same time.

Some of us went to a talk by Jonathan Mooney recently (a fabulous speaker) and he emphasized how normal is an illusion based on a “norm” that often doesn’t make sense, and how children should be celebrated for who they are rather than pushed to be otherwise. It very much hit home for me. So what if my 5th grader is not ready to stay overnight at a camp? It doesn’t mean he won’t be able to when he is ready. Heck, this speaker stretched my understanding even further. As parents we often console ourselves with the thought that “well, he won’t be needing this by the time he goes off to college”. That argument, I find, is starting to get a little stretched as the teen years loom. But as Mooney points out, we don’t all have to be good at everything. His mother helped him spell check his papers in college and now his wife spell-checks his books (as he is dyslexic). Even as a Honors graduate in English Lit from an Ivy League school, he doesn’t really need to know how to spell.

But I especially find this concept difficult with a child that struggles with a lot of anxiety and depression. I don’t think accepting him for who he is means watching him suffer, yet how can you help a child through this without sending the message that something needs fixing, something is broken? And what if the child *says* something needs fixing? “You are great just as you are” only goes so far when one is never invited to birthday parties and one’s best friend goes to them almost weekly.

Perhaps there is no clear answer on this – perhaps it is just one of those lines that requires constant balance.

Clapping

I see you clapping
the fireworks so bright
Your hands are awkward
Normally so light

Then I realize
I’ve never seen you clap
At least not often
Never in a crowd

You used to scream
When I would applaud
Your hands over your ears
Shutting out the sound

The absent reaction
Catches me by surprise
Empathy is so much easier
When looking backwards

You say you liked the bang
that moved the earth
During the finale
When fireworks lit the sky

You have come so far
Yet there is far to go
I know you’ll get there
I have to simply trust

Copyright 2006, Lisa Stroyan

Crossroads

Here I stand
Again at a crossroads
Be firm, push you through
Relax, and let things go

Neither meets my needs
And yours, who knows?
Yet here we are
Again

The bell’s about to ring
Decide quick, go
Or stay and push
Anxiety wells up

Insidious Praise

Insidious Praise

She’s dying inside
Not sure how to cope
The fear bubbles up and over

Will I get through today
Why am I here
What is wrong with me

The anxiety keeps her docile
The adrenaline, awake
No-one sees the pain

“She seems fine”, they say
And in little bits, she is
But there is a cost

“Just try your best!”
Well, what if you already are
And still it’s not enough

She gives it all she’s got
Just to get through
Those around her beam and smile

They don’t really see her
And of course they never ask
They see what they want to see

“You’re doing so much better!”
The words make her cringe
And pull further inside

Praise cuts like a knife,
When it’s counter to what’s real
Widens the isolation gap

Would concern be so hard?
But they have their own fears
So everyone keeps plugging on

It’s Monday again
Where did the weekend go?
She’ll do her best, it’s what she does

Copyright 2007, Lisa Stroyan

Sweet Normalcy

Is this what normal looks like
Sometimes I catch a glimpse
A taste to make me wonder
Bites just big enough to tease

I could get used to this
This feeling, like sugar and caffeine
A burden lifted, anxieties released
This could become addictive

I can’t hold it too tightly
It’ll crumble into dust
And yet I can’t let go
I want it oh so much

Normal tastes so sweet
Then it’s snatched away
Maybe we get a little taste
Sometimes it lasts a while

Expectations set a tone
But then the crash is harder
I forget that I can deal
That this is what’s been dealt

Sometimes we get the blame
Even more, we put it on ourselves
It’s a lonely place to be
When normal comes and goes

Others do not understand
What seems simple and mundane
What they’ve always had
Can taste oh so sweet to me

So I learn to accept
To take things day-to-day
One step, then one more
Release fears that hold me back

I’ll let go of expectations
And be here in the Now
I’ll savor my bites of normal
Little gifts to just enjoy

Copyright 2006, Lisa Stroyan

I see you

I see you
Little bits at a time
Peeking out from a window
That’s foggy and stained
We wipe at the surface
And try to clean from inside

This struggle goes on and on
At least today is better
But yesterday was worse
So how do I tell
What is right, What is true
For you

Your beauty is deep
Your talents strong
I’ll never give up
I’ll always see you
The best in you
However hidden it may be

Copyright 2007, Lisa Stroyan

Clarity

A friend commented on a local list how much more delightful her (recently annoying) children were when she fed them and make sure they got enough sleep!

We’ve recently found out that DS has chronically low energy levels – he’s literally running on adrenaline (corresponds to the “not enough rest”) and his body is eating his own muscles for protein (obviously the “well-fed” part) despite adequate intake.

It seems that almost all of his issues – severe anxiety, moods, etc – can be traced back to this basic issue (which is quite complicated once you get into the “why” of it). After a summer of pumping him full of supplements (currently 33 pills/packets/etc total each day, poor child) we are having so many more good days than poor ones – and the poor ones are almost always an impending illness or a sleep disturbance. It’s so nice to see – to just be around! (I wish some of you that came last night had been at the plant exchange – talk about night and day!! At the beginning of the summer he couldn’t even come out into the yard for a party he had helped plan, due to anxiety…and he was so upset about it….last night he was a social butterfly, showing off his guinea pigs and fetching candles so the bugs wouldn’t eat us 🙂

It’s really eye opening…my whole business is based on the philosophy that kids (people!) are doing the best they can with what they’ve got…but there were parts of me that still didn’t quite “get it” until this summer. Ooooh, he’s *not* being rude because I’ve failed as a parent, it’s because he’s drained down to nothing. Get him feeling better and he is a sweetheart. Ooooh, when he says he “can’t” walk back to the table and clear his dishes, he really feels that way, he’s not just trying to be lazy – get him feeling better and he makes me lunch 🙂 Etc.

I’m still really nervous about school though….I’m afraid we will just not be able to keep up and balance all of the stress and exhaustion with supplements and I wish he had more of a reserve built up. I asked him if he was almost ready for school to start, and he said no, he thinks about 5 months of summer would be just right. Smart kid…the way things are going, I wouldn’t mind another month myself!