Living The Blue Collar Way: Tourette Syndrome

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 seconds....in 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!

Again, to all of you that follow my FB page, thanks for being so supportive and hanging on while my family went through this stressful time. It's not over yet but, at least we have respite for a couple of months! Anyway, I can't think of better way to kick back into blog mode than another "Not Your Typical Child Tuesday"! :)

If you couldn't guess by last weeks post, I am going to talk about Tourette Syndrome today. If you think you know all about it and it's not in your life, then you don't know a thing! For example, the stereotypical misconception of TS is that you have coprolalia (yelling curse words) is actually rare in people with TS and that the percentage of people with coprolalia is something like LESS than 10%?! Did you also know that even though when TV shows or news shows mention TS, we typically think of adults but, that a majority of people with TS are children?!

Tourette Syndrome affects something between 1 and 10 students per 1000. Which sounds like pretty good odds your child or family won't have it but, since my son has been diagnosed, I actually see a lot of people that I can honestly say would fit the diagnostic criteria for having TS and they don't know they have it! TS can be so mild that a varying amount of adults have had it a majority of their life and not know it nor have their 'tics' get fully noticed by family or the public or they get misdiagnosed even. In fact, most females with TS will often get diagnosed with OCD!

TS affects boys 3x more often than girls and is prevalent in the Caucasian population versus any other. There are some genetic components as well in developing TS. It has been known to run in families but, a lot of the time, it appears for no reason. There are certain familial traits that often seem to be present in families though that many a researcher finds interesting when TS finally manifests. For example, OCD is hugely prevalent in families of a child with TS. Though again, it's not always that way but, a large enough number of things like this seem to happen and it has caught researchers' attention. Another main focus is the dopamine and serotonin levels and receptors in the brain. The theories go that either the receptors are hypersensitive or that the person with TS over or under produces those chemicals in the brain. They have even found that mutations involving the SLITRK1 gene have been identified in a small number of people with Tourette syndrome. SLITRK is responsible for providing instructions for making a protein that is active in the brain. They believe that the SLITRK1 protein might plays a role in the development of nerve cells, including the growth of specialized extensions (axons and dendrites) that allow each nerve cell to communicate with nearby cells. It is unclear how mutations in the SLITRK1 gene can lead to this disorder.

So, what do we take from this? TS is a neurobiological disorder that usually presents with tics. Tics being involuntary, rapid, repetitive movements or vocal outburts. Tics will wax and wane but, be present for at least one year. Tics often change and go away or change and reappear. For example, they may have a blinking tic that stays with them and a sniffing tic that changes to a humming, etc. Some tics reappear intermittently and others may only appear once. There is no rhyme or reason for it. Tics vary from person to person in severity and duration. Some kids may have days, weeks or months with no outright noticeable tics, while others will never have a tic free day. Some kiddos may have severe enough TS on an upswing that they cannot walk, talk, or eat normal! For some other kiddos that severity of tics may be an everyday thing!

Children with TS typically have a normal range of IQs, meaning just like the normal nuero-typical children, they have a normal intelligence and some have high IQs. They are in every way as normal as your son, your daughter or you neighbor's children. They may have other issues though, called comorbid disorders, like ADHD, OCD, Sensory Processing Disorder, ODD, Asperger's, etc. It is these accompanying disorders that often times gives the child some trouble, be it with school, attention, behavior, etc. To make matters worse, children and adults with TS often times have episodes we as parents typically call rages. These are never pleasant for anyone involved. They often times on an upswing or if their TS is severe, are exhausted by their constant body motion and it's painful. As a parent, there is nothing more painful than to watch on in helplessness.

There is so much more to say on TS but, I will save it for another post! :)

Thanks again for joining me for another Not Your Typical Child Tuesday and thanks again for hanging with me while we went through this difficult time in our family. Your support was seriously amazing!