It's been awhile since I have blogged about Bryce's Autism Journey. Earlier this year, Chris decided that he was ready to dig deeper and began extensive research into ways that we can help Bryce progress with his Autism. I do not have the natural gift or desire to research - I am the type that skims directions and begins assembly until I hit a problem. Chris, on the other hand, thoroughly reads instruction manuals and begins with a plan in mind. This would be why he's in charge of research for our businesses, our son, and our lives. ☺ It's quite a chore to do research on Autism with the volume of opinions that vary so much.
When someone is stating their opinions, what kind of study is it based on? A three-week study of 3 people or a one-year study of 100 people? Please note that this study was one child - our boy - and the study will continue the rest of our lives!
While Chris has been researching, I have been listening to Autism related podcasts to get further educated. It has been eye-opening in may ways. As with all parenting advice, I listen and pray for discernment to know what applies to our little family. I recognize that all children are different, regardless of their neurological status. Parenting Bryce requires the additional challenge of figuring out what's going inside of his mind and body, since he cannot really tell us. Thus our recent testing ...
1. IGG TESTING: We had Bryce's blood tested for sensitivity to a long list of foods. He tested positive for a very high intolerance of gluten. We understand that he does not have an allergy to it - but it can't be good for him. We are making larger efforts to remove gluten from his diet with minor exceptions when options are limited. Since reducing the gluten from his diet, his palette has positively changed. We are adding new "Bryce-approved" foods to his list on a weekly basis! It's exciting!
2. VITAMIN TESTING: Bryce's blood was also tested for vitamin deficiencies. Chris has found supplements that Bryce now takes every day which seem to be helping him progress. Coincidence? Possibly but probably not. It's amazing how God created us - I am a firm believer that what we put into our bodies greatly affects us. Below is a list of Bryce's daily "num nums" which he actually requests every day and tells us what they help:
Vitaspectrum Multivitamin (mixed with grape juice) - "It helps your body"
GutPro Probiotic Powder (sprinkled on food) - "It helps your your poops" - It also helps your gut to heal
Camilk Dairy Freeze Dried Powder (camel milk) mixed with Lifeway KEFIR smoothie (includes LB rutari which is known to help autism) - "It helps your bones"
3. ENVIRONMENTAL: During our Maryland visit, we began to suspect that Bryce may be allergic to cats after what appeared to be an asthma attack. After our return, he had a couple more episodes of difficult breathing which prompted breathing treatments. As it seemed to worsen, we shared our concerns with his pediatrician who called in a steroid and also gave us a referral for an allergist. Since Bryce started taking Montelukast and Fluticasone each night, we have had no asthma issues. Yay! In order to figure out his triggers, he was tested for environmental allergies. We now have confirmation that he is allergic to cats, dogs, bermuda grass, maple trees, and oak trees. Guess what kind of trees are in our back yard?! Yep - maple and oak. Oh well. His medication should keep that under control, so we don't have to relocate. ☺
Another thing to note: We kept getting calls from his Occupational Therapist to come and get him early due to sickness. When Chris would arrive, Bryce seemed fine. The cough would stop, and he would be fine the rest of the day. I knew that he wasn't sick or contagious at that point but couldn't pinpoint the problem. After witnessing an asthma spell after taking him to Rock The Spectrum, we figured out that extensive exercise is a trigger. Mystery solved!
4. DNA TESTING: The final step was autism-related testing recommended by Bryce's neurologist. It was more blood work - Bryce was a pro by the time we got to this round. He knew the drill and pushed through to get his band-aid, his badge of honor for being such a brave boy! ☺ The test results just came back last week and have given us a glimmer of hope ... a deficiency in carnatine. Why hope? Maybe this is actually something that we can do differently to help him! It's very discouraging when your child is clearly struggling and there's nothing in your power to make it all better. It's not like a cold that eventually goes away. It's also not like asthma that can be managed or a disease that can be treated with medication. Autism is an entirely different diagnosis that is complex without clear answers - only recommendations that may or may not work for your child.
Studies show that deficiency in carnatine can affect your brain. Sources of carnatine are breast milk, cow milk, formula, red meat, and eggs. Carnatine is not in fruits, vegetables, or carbs - a large portion of Bryce's menu. The timeline makes sense in our siutation. I stopped nursing him at 18 months. Soon after ... development stopped, regression began, and one year later, he was officially diagnosed with Autism. His diet did not include milk, red meat, or eggs. Water has always been his primary drink due to eczema reactions to cow milk.
When I googled "carnatine", I saw this answer to the question "What is carnatine deficiency?"
Signs and symptoms of primary carnitine deficiency typically appear during infancy or early childhood and can include severe brain dysfunction (encephalopathy), a weakened and enlarged heart (cardiomyopathy), confusion, vomiting, muscle weakness, and low blood sugar (hypoglycemia).Jun 12, 2018
Yikes! Until we recently changed his gluten intake, his list of foods was short. We are encouraged that Bryce is now eating more foods which includes bites of steak and LOTS of eggs! He loves to crack 'em and eat 'em. ☺
We are waiting for Bryce's neurologist to call us with the DNA results. Once we have that information, we will make our next plan of action and continue to navigate our way along this Autism Journey. Feel free to join the ride on our blog to learn more about "our kids".