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 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!

Not Your Typical Child Tuesday #4

Today I'm going to tackle what to some, is a controversial topic. Today, I'm taking on ADHD head on. Now, I know some of us don't understand why this is controversial and truth be told, it shouldn't be at all but, there are those out there who don't understand it and therefor chalk it up to bad parenting, or kids just being kids, or kids being bad kids even. So, in an attempt to understand this disorder, I'm going to delve into the world of ADHD.

What is ADHD?  ADHD is a neurobiological disorder characterized by developmentally inappropriate impulsivity, inattention and often time hyperactivty. While everyone is spacey at one time or another or has a hard time sitting still, those with ADHD or ADD can't seem to focus on a daily and consistent basis. They not only can't seem to focus on a task or two or ten, they can't seem to sit still for very long. This problem is on a daily basis and effects their daily lives. Most often, children with ADHD also have something called Executive Function Disorder. This is why they have problems, analyzing, planning, organizing, scheduling or not only completing tasks but unable to meet deadlines in life. That said, often children with EFD will often get misdiagnosed with ADD. Which is simply the inattentive type of ADHD without hyperactivity. Though, children with ADHD or ADD may well have both! Most noticeably those with EFD when put on stimulant meds, will not have symptom improvement.

How do you know when a child has ADHD?
Well first, thing you need to know is the difference in the types of ADHD. One being true ADHD and the other being ADD.

ADD kiddos, tend to not pay close attention to things, have difficulty sustaining attention to most anything and often make careless mistakes. They don't seem to listen, struggle with following directions, have struggles organizing, most often will not do anything that requires a sustained mental effort, forget or get distracted easily. For example, my boys' half brother has a classic case of ADD. He will do fine in class but, when asked what his homework is, he could not remember. On his way out of the school for the day, when most kiddos are throwing coats on and running out the door, the teacher would report that he would be zoned out, coat half on, stopped and staring at nothing or the wall. His teacher would report that in class he'd seem to get it but, later at home when it was time for homework, he could not manage to figure out how the teacher, just hours earlier could get A+B=C. This behavior was not sporadic but, a consistent DAILY thing that impacted and still does every area of his life. Most teachers were frustrated by him because for all intents and purposes he was a good kid but, seemingly easily distracted. One year, a teacher wanted to put him in a cubicle in the hallway so that he would be less distracted! Because of things like this, he was gradually soloed out as "that bad kid" and began to loose friends. At 13 yrs old when he comes to visit the boys, if he is asked to do something requiring more than two step directions, he still cannot do it. If asked to clean a room, he can't do it. Instead, he'll stand there staring at the mess. You literally have to tell him to pick up one item at a time, ie. just pick up the Legos, just pick up the transformers, etc. He struggles daily with this and it has cost him friends, respect of his peers and teachers and with one more year of middle school, he's on the verge of flunking out!! All because the school system refused to help or acknowledge his issue, nor do some other people in his life but, that is for a different discussion! ; )

ADHD kiddos are the hyperactive and impulsive ones! They're the ones that will either keep you young or kill you! :P Just teasing! Seriously though, ADHD kiddos cannot seem to sit still...EVER! If they're not getting up and down or running, etc. they can't seem to not fidget. They can't seem to commit to quiet activities, sometimes talk EXCESSIVELY! They often run or climb a lot, never able to connect that if you climb on a bookcase and they've been told to get down because it will fall and they'll get hurt, that the bookcase will fall and they will get hurt! Even after they've fallen from the bookcase and broke an arm, you may catch them climbing to the top shelf in their closet! They seem to run on some kind of motor or caffeine line that you know nothing about. Taking turns and waiting to talk are just not in their manners bank, no matter how many ways you've tried to teach them these basic skills. If the thought of anything crossed their mind, their brain is unable to restrain the action and impulsively they respond, react or do without being able to think it through.

What are the causes of ADHD? 
We don't really know what causes ADHD. It's more prevalent in boys than girls, which as most know, means that there is a genetic component. Which is backed up by families like my boys. In my family, two of my cousins on my mom's side have ADHD, several relatives on my father's side also had ADHD, my little sis has ADHD and growing up, I had ADD - hence the occasional remarks about having the attention span of a gnat! :P The boys older, half brother has ADD as well. So, if you were using a family like my sons', it's quite obvious there has to be a genetic component. There are even some studies that show, like a lot of other things, prematurity can also have something to do with whether a child might have ADHD. To this day though, there is no confirmed real thing that they can nail down as to why some have it and some don't. There are a lot of theories about where it comes from and even contributing risk factors but, no concrete evidence. 

They can say though, that most likely the culprits of ADHD are neurotransmitters. Most likely the chemical neurotransmitter, Dopamine. Dopamine is mostly the chemical in the body responsible for keeping the attention centers of the brain stimulated. So, without a proper level of Dopamine, a person's attention span is compromised. There are also studies on the actual structure of the brain of boys with ADHD. They tend to have more symmetrical brains in shape. With 3 structures in their brains that are smaller than a neurotypical boy of the same ages. They were the prefrontal cortex (believed to be command central of the brain), the caudate nucleus and the globus pallidus, which both help translate those commands from the prefrontal cortex into an action or actions. There is even evidence that shows not only are the structure slightly different but, that the brain uses those areas differently than a neurotypical child. By doing brain scans, they've noticed that ADHD boys have abnormal increases in the frontal lobe and the striatal areas below it. These parts help with voluntary actions! So, if you follow that evidence through, ADHD boys, despite the appearance, are working harder to control their impulses than a neurotypical child is!

How do you treat ADHD? There are a plethora of answers for this. Like many other treatments for anything, what works for one, may not work for another. Depending upon your insurance issues, belief systems and money, the answers vary.
Diets are a natural thing to try and in all honesty work for a lot of people! Things like the Feingold Diet, worked well for my sister and her boys. There is a lot of research out there for this side of symptom/disorder treatment, just Google! If you're going to try this though, may I recommend: The Kid-Friendly ADHD and Autism Cookbook: The Ultimate Guide to Gluten-Free, Casein-Free Diet by Pamela Compart and Dana Laake.

I want to start off saying that don't let the Autism word scare you in any way! Once you start researching, you'll find that Autism and other things like ADHD have a lot in common. Secondly, though I whole heartedly,  recommend this book, I was not asked to review nor have any affiliation with anyone that has anything to do with the writing or printing of the book. So, trust me when I tell you that it is a great, eye opening book for anyone researching food and ANY of your child's neurobiological issues. Once you've given it a healthy once over, you'll never look at food the same way, ever.

If you're not into the diet and food related options for treatments, you can always try some kind of occupational therapy. Yes, I said OT! You'd be surprised to know that occupational therapists can employ a whole host of methods at their fingertips to help ADHD kiddos from "normal" OT practices, to Interactive Metranome, and cranial sacral therapy. Here is where I get to vouch for something that I was not paid to talk about nor asked to. Cranial Sacral sounds all hippy like but, it works and it works well for one of my boys. On the days he sees his OT and she does this for him, he actually takes a nap, holds still, listens, nor is he up and down on the emotional roller coaster. This doesn't seem to effect my other boy though, so remember what works for one kiddo may not work for another. 

Another thing you could consider would be some kind of therapy. The earlier you get in to see someone, the earlier you child can learn behavior that is positive and helpful for themselves. They can do psychotherapy, behavioral therapy - including CBT (Cognitive Behavioral Therapy), social skills training, parent retraining, etc. In my experience though not every counselor, psychologist or therapist is a good fit for a family. Some cling to older mentalities, some to a very hands off approach to dealing with various issues. I once had a therapist tell me to physically hold my son in timeout when he'd earned his way there....that is THE biggest no no for my oldest guy. He never did like to be held much and even though I told the guy that holding him, results in the "fight of flight" reaction, he still recommended that I try this. Needless to say, I never went back to him after that! Don't be afraid to try different professionals until you find one that fits! You have to have a great team, that communicates well to make this work. 

Lastly, and as a last resort, there is always medication. I will not say with or without medication is best because, as I've said a hundred times, not every child is the same. Some are further down the rabbit hole than others and some are more defiant than others. It's a hit a miss kind of thing. I will say that medication should be broached as a last resort though. It's too easy to take the smooth road, then to take the bull by the horns because going it without and even sometimes with meds, is NOT easy. If you are going to do meds though, here's my two cents:

• I recommend asking and researching which ones are the safest first. With the new drugs out there being pushed to docs they'll most likely throw you on the newest one or two that they get but, sadly enough, Riddalin is still the safest starting point in a lot of cases - though not always. 
• Keep an eye on side effects too. One medication worked well for a lot of kiddos, mine was no exception but, like his cousin, that medication caused stomach pain in both boys. 
• If you're in it for the quick fix, think again. While some medications seem to produce a noticeable result for some families within a day or two, sometimes it takes up to 2 whole weeks for the medications to build up enough to be noticeable. 
• Keep an eye on mood swings. One very popular medication right now seems to cause this issue in a lot of kiddos, my nephews and my son again are no exception. One nephew was removed from it, the other can tolerate it in small doses.
• If a doc recommends medication, you have every right to say, "let me sleep on it" or flat out no! Don't let them run you over. Remember, this is your child, you are the parent and the pediatrician works FOR you!

The advice I give you here comes from experiences and as a mother who does do medications for one child and is able to opt for more natural treatments for the other. Honestly, after all these years and experiences with medications, if I could go for fully natural remedies for my oldest son, I would in a heartbeat. You'll understand in a later Tuesday post why I had to take that route. Just keep in mind during your research or dealings with various docs, that you have to do what is right for your family. If you opt for natural treatments, don't let your family or friends make you feel like you made the wrong choice. If you opted for meds, don't let anyone else make you feel as if you took the easy way out. For most of us, it was not an easy choice by any means. I cried for days when I found no other way out for my son. 

That being said, for those that don't know, medication is not the easy way out. If you do take more than one medication, it is tricky to find the right balance for your child. Not to mention too that as they age so does their body chemistry and so the perfect balance no longer works or they build up a tolerance to the medication....it is a merry-go-round for sure. AND the mother that chose to medicate, also still chooses a way to help treat her child, be it OT, therapy and/or food! So, here again, NOT the easy way out! My oldest does take medications, goes to OT, has therapy and has a diet that I found worked wonders for him. With all this in place, he went from 7 medications down to 4! Which is still a lot of medications and again, I'll explain why in another post but, suffice to say, he does not have just ADHD. The point though that all of these ways to treat ADHD have been employed and in conjunction with one another have worked well for him. Again, while my youngest son with just diet, and so far occupational therapy has done well! So, no matter what avenue you choose or if you're a split family like ours, remember to keep your options open, keep an open mind to other families who've chosen to do things differently and don't be afraid to challenge your doc if need be. They are not the be all end all on the subject of YOUR CHILD! 

If you're just reading this to learn, I say again, quit giving that kid and his mom the stink eye in the grocery store! Sometimes a fit is just a fit and other times, it's what you don't see under the layers that is real problem, not bad parenting or bad children. So, stink eyes off and learn to be a bit more open minded! :) 

Thanks for joining me for another Not Your Typical Child Tuesday! Now back to your regularly scheduled program....