Thursday, April 4, 2013

Real Life: Why we are milk and gluten protein free!

Since I have been posting a lot of dairy free, gluten free and/or allergy free things on my FB page, I thought that maybe I should tell you all why. I've mentioned it in passing before but, it's time to share a bit more of our life with you all.

My boys at the Special People day at the local Shriner's Circus.

It started when DW my oldest son, was born with something called MSPI (milk/soy protein intolerance). It apparently only happens in the midwest and/or if you're from the midwest. I'm thinking our diet is most likely to blame but, who knows really. It is when the little guys or gals can't digest milk and/or soy proteins. Some kiddos get this worse than others, while others simply switch to a soy milk or if breast feeding, the mom switches to a few things and your kiddo is almost as good as new. My two little guys though, they happened to get probably one of the worst cases our doctor had ever seen.

 DW was admitted to the hospital twice for failure to thrive, dehydration and malabsorption issues all due to his MSPI. I was advised then to stop breast feeding and switch to a soy formula. We didn't know any different and followed doctor's advice. Which led to switching from a soy formula to a another formula, to another and another until my son was put on NG (Nasal Gastric tube) feeds on a 24hr pump. That lasted for 6 months. Where they literally just dripped food in by the hour - DRIPPED IT IN!  They wanted to do a TPN but, feared he would not survive, that's how bad off he was. That's when we landed on something called Vivenex T.E.N. and he could tolerate it, it was a godsend. Horrible, awful stuff really. Given to people in a vegetative state. So you can imagine how truly tasty it really was. When he ripped his tube out at 10 months old, I asked the doc if we could try it without the tube and we were able to do that successfully. By 2yrs old though, we were told that he'd outgrow his MSPI and to go about our lives. So, we did just that.

Two years before my youngest was born, DW was diagnosed with something called functional abdominal pain. What did that mean? That they could find no reason for his stomach pain, even after he was scoped at both ends! He would just double over in the fetal position for hours sometimes, other times, just minutes. Yet, afterwards he'd sit up and eat, drink and even talk, like it never happened. As you can imagine though, it wasn't conducive to weight gain, let alone maintaining his weight. There are theories that it is some form of stomach migraine, food protein sensitivities, to psychosomatic. They gave us a medication and said in time it would help his pain and even his appetite, as he was still small in size. I was never really sure that it worked really but, I was scared so we went with it.

Flash forward to when my youngest was born. I breastfed him the entire time. 3 months in, like clockwork, he began the screaming that MSPI entails - not fussing or even crying, SCREAMING! I stayed breastfeeding him this time though and thoroughly changed my diet, but like his brother, he was extremely sensitive to just about everything. Still, I was determined to breast feed until he was 2 years old! By the time he was 12 months old though, I decided that there was only so many times I could eat ground turkey, sweet potatoes, brown rice, green beans and just a couple of other things. Literally a very narrow diet.

JD at his 1st birthday, with his diary free cake. He was a big fan of the frosting! 

By the time JD, my youngest, was 2 years old, DW was now in constant pain and no one could tell me why. His failure to thrive diagnosis was still in place and in fact, he'd lost even more weight and only wanted to eat macaroni and cheese and ice cream! Which jogged my memory. I'd read an article during my MSPI research that sometimes the things we're most allergic to become the things we crave! So, with a little nudge from a wonderful friend, the lady behind Sensory Street Inc. on FB, named Ida, the very next morning I removed milk/casein from both of their diets again and changed their vitamin supplements to something a little more easily digestible. Liquid, no preservatives, gluten, dairy, etc. free.

DW, 6 years old, pale, and a few months away from almost being put in hospital in 2010.

Within a week, he was eating more things, his pallor improved so dramatically it was almost scary! Within a couple of months, he went from 8 medications down to 5 and of those 5 left, I was able to get 2 of them to half strength or to the lowest dose possible! Which was progress. I'm not one of those moms that can just give their kids meds and be ok with it. Even though he's taken them for years, I cry before every new drug, no matter how small the dose. So, to loose them or shrink them, made me feel fantastic.

Flash forward a few months and every disorder that this boy had, was so much milder, it was like living with a different kid period! His tics from his TS (Tourette Syndrome) were so much milder mainly. He went from ticcing so hard, he couldn't walk, he was beating himself up, he couldn't finish a sentence (partly due to tics and partly due to his OCD that made him have to start the sentence over every time a tic stopped him from talking straight through). He went from having coprolalia - that would be what the general population thinks of when they hear Tourette Syndrom, to never expressing an urge to do it! The change in just his TS alone was mind blowing!

It peaked my interest for sure. So, like any science geek, I did the research, read articles, bought numerous books, listened to online lectures from scientists and doctors. As my step-son says, I "got my geek on"! I learned how or why this might happen and what I learned, changed the way that I look at food, how we feed ourselves, our crops, and the pharmaceutical companies too! No worries, I'm not going to lecture you, promise. This was just our journey and it's not for everyone. So, if you want to know more, ask and I'll tell you but, otherwise, no preaching here! :)

Over time, we began to go organic as much as we could afford to do above and beyond the milk free stuff we had to buy.

Flash forward another 2 years..
My oldest, DW, is getting poked and prodded for what must me the millionth time in his little life. I was holding his skinny, little, legs down while these sterile nurses attempted to get blood from his pale, little hand. I looked down at his teared streaked face and thought, "What am I doing? Why are we doing this again?!". It was at that moment I realized that instead of continually drawing blood to check for Celiac disease yet again, let's just go gluten free to save the trouble! My son has shown every indication/symptom of Celiac apparently all these years. When they'd check him though, he'd test negative. So, they said, let's check him every 6 months - 12 months....which for some insane reason I agreed to. After my epiphany though, we haven't had to go back! And yes, I put my other son on a gluten free too. I mean DW was allergic to strawberries and JD had followed suite, DW was sensitive to peanuts and JD followed suite. So, chances are that if one was sensitive to gluten, then the other one was or would be. So, why not?

Was it easy? No! As a matter of fact, he actually had what a neurologist/psychologist who knows his stuff said, was severe withdrawal symptoms from the gluten! He had a violent breakdown in the OT/PT's office that was like something he had as a wee child before we removed him from milk. It was INTENSE!

DW just this February after he woke and brought his menagerie of animals with him. 

That breakdown was on day 4 of going gluten free. By the end of that week, he was almost neuro-typical! I ask him to pick up and like a typical 8yr old he grumbles, protests and then....picks up! He still tics, but his aggression is next to nil now. He actually smiles and laughs a lot! He's currently in the process of being knocked down on his ADHD meds and his OCD/Anxiety meds as well! Oh and his appetite improved by leaps and bounds!! He went from barely eating anything for breakfast, to wanting 4 gfcf pancakes! He went from avidly avoiding anything he'd never eaten before to actively agreeing to try at least one bite of new foods. Which is a HUGE sensory thing in my house and something both boys are super sensitive to.

As for my youngest when he went gluten free...

My silly little jokster at our local zoo. 

Newly diagnosed with ASD in November, I was given an ADHD med to put him on. I cried for 2 days before I put him on it but, I did so because I knew I couldn't handle him as he was. This kiddo was all over the place! I went to the bathroom one time...literally not even a single minute: 60 that time, he had stacked enough things up to get to the things I'd put on top of the fridge! He was like a wind up toy without anything to wear him down! His therapists would continually tell me that I needed to work on his attention span at home....does anyone know how to do that?! When I would ask, none of them could even give me an idea on how to do this. So, it wasn't just me struggling with this sweet little boy. I loved him though and didn't want to loose his silliness, and I knew meds might do that to him, so it was heartbreaking to do.

Shortly after going gluten free, he got sick, the first time in his whole little life he's ever gotten sick period. He was always my healthy ox! A poster child for a breastfed baby, he never really got a cold even until this last year! He was loosing things from top and bottom. So, I don't typically give them their ADHD meds when they are that sick. He was sick for 6 days and at the end of those 6 days without meds and being gluten free, he was calmer - much calmer. Now, I know it takes time for those meds that have built up in his body to fully dissipate but, the difference in just that short of a time was distinct.

He's still a little wilder than the neighbor boys but, still way more still than he was before. His ASD traits
show a little more, like when he prefers to sit in the room with me but, not want to play or talk to anyone but, he is TONS calmer! He is actively trying to be silly again, he smiles, laughs...still avoids too much eye contact but, he's medication free now and he seems happier and healthier all around. It did not make the impact on him as much as it did for my older child and there are some theories as to why. Mostly they hold that his premature birth and lack of oxygen at birth contributed to his current neurological predicaments but, that's ok. He's still my little man!

Did I go gluten free for a behavior change? No, I didn't. I did it for the health of my oldest son. What happened in the process though was worth it alone. Since that time, I got my "geek on" a lot more and have learned TONS of information on why this might've happened. Do I preach to the masses? Not always. If asked, then yes but, generally I understand that not everyone believes in this, I used to be one of them. I understand that not everyone is blessed enough with being able to afford the things that we've had to do. My husband doesn't make a ton of money but, he does make more than your average burger flipper. Which has entailed us to slowly figure out how to do what we've done over the years.

So, if I share a lot about gluten free and/or milk free, or organics, or a bit more whole foods a lot on my FB page or Pinterest page, this is why. These boys are my whole world and getting them to where they are today is worth pinching and stretching every penny to me.

Do I force my opinions or experience on everyone else? No! This is just our experiences. And I say again, I realize that not all of us can afford to eat this way. We did it slowly, one thing at a time over the course of 4 years. It's tight sometimes, a lot more than we'd all like but, their neurological and physical health is worth it to us. And no, I don't condemn or look down at anyone who doesn't do this!

I shared this so that some of you who've messaged me can get an answer to why I termed my page and blog "Blue Collar" but, then speak of organics, dairy free and/or gluten free recipes or post things about health that might seem bizarre to the general public. I do not think that we all can afford this kind of stuff but, when you have to for the health of your children, you learn to cut corners. Like cable, we do not have cable - shocking I know. We do not have voicemail, call waiting, caller ID or anything like that. We have a straight land line phone for emergencies and I have a very cheap cell phone, with no real perks, that I keep with me in case something goes wrong while out at one of their appointments or anything like that. We buy our zoo membership, children's museum memberships etc. with our tax refunds because otherwise we'd have no way to afford that normally. So yes, I realize that we all can't afford to eat this way, nor do the things that we've done and I don't look down on anyone who can't. This is just OUR life, it may not work for you but, diversity is what life is all about! Right?

Hope this answers some of your questions you may have on why I share what I share as far as organics, GMOs, health, etc. goes. I hope you all have a wonderful week everyone!

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