Thursday, September 20, 2012

My Theory On Gluten vs. Sugars and Carbs

If she looked more tired, I'd swear this was me.
I don't know "everything there is to know" about food. LOL I'll admit it. But I've done about 4 days of up-until-2am research on gluten, and sugar, and the behaviors my son exhibits. And he FITS gluten behaviors. But when I remove all other refined sugars, he's "normal". (Whatever that means...LOL.)'s my thing.  COULD it be possible that he has an issue with sugars that goes beyond the tiny amount he gets in things like bread (there would be 1.5 g of sugar per slice of bread), and come down to a combination of refined sugars and  CARBOHYDRATES??

Carbs are turned into sugar by our bodies. Most things that contain gluten, also contain carbohydrates. Fine. Whatever. But then add MORE sugar to those carbs. Like a freezie.

How I'm seeing my that we have a cup. When we eat carbs all day long (toast with our breakfast, a sandwich for lunch--whole grain of course, because mom has the best of intentions--and then some kind of meat and *POTATOES* for supper...we fill the cup. To the brim. Our body is busy as hell breaking down those carbs into sugars, and then processing them. (There are 30 g. of complex carbs in a slice of whole wheat bread.)

But then we have chocolate chip cookies for a snack. Or we go and get a freezie for a treat from the store. Or ice cream. Or both. And then dad comes home and gives gummies.

Since the cup is full already, could the *extra* sugar consumed throughout the day be pushing them over the edge?? Could the failure to remove these sugars from their diet make a child who SEEMS gluten intolerant, be in fact suffering from a sugar/carbohydrates issue?? (Is it the gluten, or is it the sugars in their diet combined with those carbs that make them act insane??)

I don't think removing gluten is bad, that's for sure. And maybe that would be the final step to make The Boy behave a little more "socially acceptable"...but I don't know. He has been this guy since before maybe the guy he is off of sugar is just who he is. (Which is perfectly fine with me! He's his own [little] man. And there's nothing wrong with that!)

I'd love opinions on this.  I've been mulling it over for 5 days now. (I have no PROOF that this could be the case...but it seems logical!)

On top of all of this, I really believe that most of our problems in general come from consuming foods that aren't natural to our bodies in the first place.    We're not supposed to be consuming the breast milk of another species.  We're not supposed to be eating these refined sugars.  We're not supposed to be eating these grains the way we eat them.  And before yesterday, I had never bothered to even look up "Paleo" diet...until a friend sent me a link to it.  And that's it!  That's what I'm talking about.

So what I'm going to do with my son, for now at least, is put him on a paleo diet and see if anything dramatic changes.

I'll keep this updated.

*I want to mention that I am sure that there are lots of people who react only to gluten, and the sugars and/or carbs may make little to no difference to them.  This is just my theory on my own son...and maybe it's the case for *some* other people too.*

**And ftr, I'd feed him whatever I had to feed him to get him feeling the way he should feel.  Just because I choose veganism, does not mean that I expect my 4 year old son's diet to mirror my own.**

Tuesday, September 18, 2012

My Boy Can't Have Sugar

Well, it's pretty common knowledge around here that my son can't have sugar without some explosive behavior following it.  He will do this high-pitched scream (that you would SWEAR just broke your ear drums), and he cries, hits, breaks things, growls, throws himself on the floor and screams things like, "I neeeeeeed iiiiit!!!", in a very scary growl voice.

So we do our best to limit sugar.  He seems okay with raw honey.  But you give that kid some white sugar, or ANY food with "fructose", "glucose", or "glucose-fructose", and you're going to meet The Evil.

I've known this for some time now.  Seriously.  I spend 24 hours a day with my kids, so when my son is behaving normally when he gets up, only to then start flying off the handle after getting "Lucky Charms", I SEE the problem right there.  Screaming in my face.  But I'm only one person, married into a family that think that children only get to be kids once, and apparently that boils down to meaning they should be allowed to consume as much junk food as humanly possible, every chance they get.

And I'm not totally innocent here.  I admit that.  I've given him a freezie in the morning, only to be met with a little boy who is losing his mind, not five minutes later, begging for another freezie.  And you know what?  I've given in and gave him a 2nd one.  I'd stand there and tell him, "I'm SERIOUS.  This is the LAST one.  Don't ask for any more because you won't get them."  He agrees.  I stupidly believe that this time will be different.  He eats it.
That's when the shit hits the fan.
He's nuts by that point.  And I don't really know how to explain this any other way than to say that he looks like an addict.  He freaks out, trying to scare me into giving him more sugar.  Or trying to FORCE me to.  Or trying to guilt me.  Or trying to wait me out...hoping I'll leave my post at the fridge, and he can just get in there to grab a handful of them.

I've found this boy in his room with a steak knife, and a bag of freezies before.  And as a mom of a boy like him, I don't even know what scared me worse.  Him having a knife, or him having those freezies.  Because both (especially combined!) could really make life dangerous in our house.

I've found him hiding under the table DRINKING sugar from the container.  Because he "needs" it.

I've told *certain* family members that while they watch our twins, they shouldn't be given sugar.  When we pick them up, we hear all about the ice cream and chocolate cake they ate after lunch.  Though, truthfully, we didn't need to be told that our son had been given sweets...we could tell the second the front door opened and we could hear "the scream".

(For anyone with a child with an intolerance to gluten, I'm sure you know the scream too...that high-pitched, out of control, sensory overload scream.)

This is not my son.  But I know that look.
Now, before I go on, in their defense, and in the defense of the other adult in this house that buys the kids junk, this entire thing is new ground for ALL of us.  It's not every day you see a child who just can NOT have sugar.  Sure, you hear a lot about people's children getting hyper after eating candy...they do.  But what our son does is so far beyond what I've seen other children do, it's not even funny.  Not funny at all.

This little boy has scared me more than once.  He's purposely thrown Baby Piranha on the floor, and she has smashed her head.  I've seen him shove Ooie down on the cement, where she again smashed her head, and he's bitten her so hard she's bled.  He's thrown her off the couch.  He's pushed her into the corner of the kitchen cupboards.  He's punched her in the face.  I could never leave them alone in a room, for fear that he'd end up putting one of them into the hospital...

...And still I had to tell people not to give him sugar, and watch them do it anyway.  Because they'd write it off...write HIM being some kind of mental issue.  He's got "ADHD", or "ADD".  He's got "anger issues."  He's "SPOILED".  Apparently I "need to spank him".  Yet, for over a year, I've been SAYING that it's not HIM.  This isn't his fault.  He loves his sisters.  I've seen his kindness.  I know his heart.  And the only time he's terrifying is when he's on sugar.  And in those times, he scares me too!  I have taken more than a few things off the head, or face, when he is raging from sugar.  (Be it something he picks up and throws, or a headbutt to my face.)

Let's fast forward.  Last week we went grocery shopping.  They had candy on was only .25 cents a bag...that was $3.74 off.  Per bag.  So yeah, we bought some.  (Okay, we bought 10.)  Then when we got home we put them up on the very top of the cupboards in the kitchen.  Even I have to climb to get to them.  We knew that if we didn't do that, The Boy would be all over them.
I TOLD my husband not to give him any.  I told him that if he must eat it while they're up, to hide (like I do!), and not to give him any.
Not two minutes later The Boy comes running into the kitchen to inform me that "Daddy gave me candy!"

My brain nearly started leaking out of my ear.  ARE YOU FREAKING KIDDING ME?!  WHAT?!?!  Our day had been so normal before that.  So calm.

Of course the insanity came with the candy, and the rest of the night was a nightmare.  I won't get into it, but it was particularly bad all around.

Anyway, we survived until bed time.  I was in the kids' room getting them ready for bed, my son looked at me and said, "Wow!  My eyes are normal again."
I asked him what he was talking about.  "Had your eyes been blurry??"
He told me, "Yes.  My eyes get blurry when I eat candy.  But they're better now."


"Did you just say that when you eat candy, your eyes get blurry?"
"Yes."  (And he does say "yes", not "yeah".)
"Do they get blurry EVERY time you eat candy, or is today the first time it's happened?"
He told me, "Every time I eat candy it happens."


So I asked him, "Do your eyes get blurry when you eat other foods like apples?"
He said no.  He said it only happens when he eats candy.

So I asked if it happens when he eats sugar cereal.  He said yes.
Does it happen when you eat bananas?  No.
Does it happen when you eat sandwiches?  No.
Does it happen when you have honey?  No.
Does it happen when you have pudding or jello?  Yes.

So apparently it's NOT just candy.  But it was very quickly narrowed down to refined sugar.  He can have honey and he's fine.  He behaves normally, as though he didn't have anything sweet.  But one small bowl of handful of Lucky Charms...and it's all over but the screaming and crying.

The next day I called my mother to tell her what was going on with The Boy.  She cried.  She was so upset that there was something "wrong" with her grand baby.  That night she called in tears begging me to take him to the Dr.  "What if he has diabetes?!"

Well whatever.  I know he doesn't because he can eat his body weight in red grapes, bananas, and every other type of fruit, and he's FINE.  But I said I'd get him an appointment, and I did.

Last night we got him into the after-hours clinic in town.  The woman we saw was awesome.  She listened to me, and she talked to my son, and then (to humor me), had him pee in a cup.  (Which was perhaps the FUNNIEST THING EVER.  Let's just say he's never peed in a cup before...and had no idea how to...and I spent more time cleaning up pee than filling that cup...)  LOL

She checked his sugar levels, protein levels, and a couple of other things with the pee stick.  He's fine.  All levels are perfectly normal.  She also mentioned that children who are diabetic lose weight very fast, and are very sick.  She said that he is not diabetic, and to follow my instincts.  She told me that if he eats refined sugars and gets blurry eyes, and acts crazy, I'm right.  She said I'm right.  (This is an amazing moment...I've NEVER had a Dr. tell me that I was right...our GP is an ass, and he'd never say that!)  She told me that he should just be fed whole foods.  She said he can have raw honey and all the non-processed foods he can eat, but most foods that are in a box or can are going to contain some sort of sugar.  She said that I just need to look at a random box at the grocery store to see that.  (She's right and I know it.)

So we got him some organic "pure juice" boxes for school (no sugar added...ingredients: apple juice, water, vitamin C), and some Lara bars (apple this time) for a treat.

It's been 8 days today being a sugar-free kid, for him.  And he can look me in the eye.  He can hold an entire conversation.  He can focus on a task for more than 2 minutes.  He doesn't get enraged when someone makes him mad.  He is being kind to his sisters, and taking no for an answer.  He is being the little boy I KNEW he was.  And it just makes me want to cry.  I want to cry because this little boy was trapped inside of himself for the last 2 years because of selfishness and ignorance of the adults around him.  *I say 2 years because until they turned 2, they'd never had a freezie or chips, and only ever ate organic whole foods.*

I am beyond amazed at the transformation I have seen in him.  It's like black and white.  He's like a different person...but not...if you know what I mean.  Because I've seen glimpses of THIS boy.  I've seen it before.  But then, part way through the day, he'd become this person I just wanted to throw in the tree.  (That's our threat around here....they know I can't and they laugh at me, but it makes me feel better to say it sometimes!)

I just wanted to let people know that something as simple as removing sugars from a child's diet can change them...for the better.  They still remain a child.  They don't turn into a frog, or anything.  And they're still going to ACT like a child.  But for my son, the rage is gone.  The anger and sadness is just GONE.
(I knew that loving him peacefully through those times would pay off.  He came to ME when he wanted to talk about what was happening.  Because he trusts me.  He knows I love him...have always loved him, and will ALWAYS love matter what.)

If in doubt, get it checked out.  And if the tests come back normal...remove sugar.  It's terrible for us anyway...and it won't hurt them to live on natural, nature-made sugars for a week until you can see for yourself if that is/was the problem.  It could end up being the answer to all of your problems.

xoxo.  Thank you for taking the time to read this.  

Friday, September 14, 2012

Avery's Story...A Year Later *Update*

The girls are now 3 years 7 months. When Avery turned 3 she could no longer receive speech therapy (their program won't offer services to anyone over 3).  They turned us over to the school district, who stretched her "disability" to get her in a special education pre-school program there.  

Now, I am not one to constantly stressing Avery's "disabilities" because I know she able to do anything she puts her mind to and frankly if I didn't tell you she had hydrocephalus you would never know. It turns out the facility wasn't the greatest and wouldn't accept her twin sister.  After discussing the findings with her therapist (which we all agreed they were really stretching) I decided to keep her out of the program for now and home school the girls for the next 2 years.  I have the opportunity to change my mind at any time.  Fortunately, Avery's speech therapist and I remain in contact.  She has a daughter, so we get together for play dates.  She said she could monitor her and if she saw any red flags she would let me know but the girls already know everything they would learn in pre-school and I can socialize them with other activities. 

On the health front we had several shunt failure scares over the past year.  Shunt failures are so scary especially with the signs of a failure being so close to illness...most common symptoms of a malfunction or shunt infection being headaches, fever, vomiting, lethargic, irritable, periods of confusion and redness around the shunt line for an infection.  So anytime I have a hard time waking and keeping her awake with sudden vomiting I am on the phone with her neurosurgeon to let them know what is going on just in case we find ourselves in an emergency situation.  It is better to be safe than sorry.  When there is a malfunction and her shunt isn't working properly her brain is pressing against the skull and obviously that is when brain damage can occur so time is of the essence. 

In this last year we also discovered that Avery has moderate to severe hearing loss in one of her ears.  It couldn't be determined if it had anything to do with her hydrocephalus or any of her shunt surgeries.  She now has a hearing aid, which she took to right away.  She calls it her princess earring and proudly models it for you. wink  

Let me tell you there are A LOT of politics around the hearing aid.  It was recommended to us to see a doctor in Denver at the hospital the girls were born to address the hearing loss.  So that is what we did, she had yet another CT scan and it was determined that the hearing aid is the solution.  That is where we received the hearing aid.  Okay so let me tell you, IF you find yourself in the situation of needing a hearing aid -- Find a clinic in your town!  Tubes constantly have to be replaced, fine tuning needs to be done on the hearing aid, new ear molds needed etc etc etc.  I tried to take her hearing aid into a clinic in town to get the tubing fixed and they turned us away (not so nicely) because we didn't get it there.  I wasn't aware of how often we would need to go in for adjustments OR the fact that no one else would help us.  So that has been our new adventure.  Between glasses adjustments and hearing aid adjustments we are always in getting something fixed. wink One of the times we were down in Denver for Avery's hearing aid we ran into her neurosurgeon, who came over to ask what was going on that she hadn't received any messages.  She is so sweet smile 

Every day leads us into the unknown but for a child that I was forewarned she might never walk or talk, let me tell you she is fantastic.  We just got in from playing some soccer in the backyard and after MOPS today she was talking up a storm about everything they did with the kids. smile I feel blessed every day for having the girls. It is so exciting to see them blossom and grow into the little girls they have become.  A couple of weeks ago we attended our 4th Hydrocephalus Association Walk.  It is always inspirational!  Walking for a cure....A that would be awesome and answer my biggest prayer!!!


Thank you for sharing this update with all of us Stacey!  You're an amazing mom, and those are some pretty fantastic little girls you have there.  You are all inspirational.  xoxoxo