The Dude with his Grandma. What would we have done if she hadn’t been an Internet sleuth?
Facebook, July 2012: Yesterday, trying to get his shorts just right in the face of PANDAS sensitivity, I hear him mumble: ‘Oh my God! What are we DOING?’ Sounded just like me. Ugh…
So, yes, as you can see above…there were still moments of laughter and joy!
We made it to mid-July 2012. I left the new doctor’s office with a lot of guilt and stress but also hope. I got the sense that she felt she could help us and, up to that point, I hadn’t really experienced that anywhere else. As mentioned in my last post, I also left with a book, new dietary restrictions, a list of supplements and an order for blood draw.
With regard to the book, The Autism Revolution, I wasn’t convinced that it was going to be applicable to us. I read it cover to cover, however and began to understand the relevance. Remember, the doc was pretty clear that The Dude didn’t have autism but that I was supposed to read this book and apply it to what I knew about his symptoms and PANDAS. While I’m sure there was much more there, what I took from the book was this:
- The author, Dr. Martha Hebert, doesn’t believe that autism (PANDAS?) is a fixed condition that children develop and keep for their entire lives. She believes it’s treatable and can improve.
- She focuses a great deal on the ‘insults’ to the body that occur and pile up, thus causing a child to develop conditions such as autism and PANDAS.
- She sees the body of the child with one of these conditions as an interconnected web of bodily health or illness. All the systems in the body are interconnected and you have to look at all of them to find the places that need to be shored up.
- She believes that improving health in one area of the body can have a significant impact on other areas.
- She provides some guidance about how those improvements might be made:
- Understand what an autoimmune condition is. Remember, the A in PANDAS stands for autoimmune. I needed to come to understand that my child’s immune system was mounting a response to bacteria, inflammation, etc. but that it wasn’t an appropriate response. While you or I might get a sore throat and feel rundown with exposure to strep, The Dude’s body was attacking his basal ganglia instead of the unhealthy ‘intruder’ and causing his autonomic nervous system to do strange things.
- Focus on the gut/brain connection – heal the gut and help the brain. This idea relates directly to the doctor’s recommendations for supplementation and dietary restrictions. I knew nothing about the blood/brain barrier and the impact of gut health on brain health. In 2012, that was all new news to me.
- Reduce inflammation in the body – also a huge concept that I needed to understand with regard to supplementation and diet. The foods that we were being advised to remove and the supplements we were being advised to give were all related to the idea of decreasing inflammation for The Dude.
- Reduce stress to allow the body and brain to better heal. I understood this recommendation but had a lot of uncertainty about how to reduce stress for a 4 year old. Honestly, I couldn’t imagine why a 4 year would have stress.
- Do blood work to help you understand what you can and can’t control. I.e., I can’t control whether or not my son has a genetic anomaly but I can control whether or not he’s exposed to heavy metals.
- Understand that strep is not really the enemy! This was the hardest one for me to ‘get.’ It actually took years and several additional conversations with doctors for me to understand: while strep was causing my son’s symptoms, strep wasn’t what we were trying to avoid. Putting my boy in a bubble wasn’t an option but reducing the inflammation level in his body so that a strep exposure wouldn’t send him ‘over the top’ was absolutely possible.
I realize that’s a whole lot of information in 10 bullets. Well, that’s just a synopsis and a glimpse into what I was able to take away from the book at that point in our journey. I’m sure there is lots more there. If you or someone you love has PANDAS, another autoimmune condition or are on the spectrum, please read the book. I’m sure I’m not even beginning to do it justice!
While a lot of the book’s science was over my head, I did take away some comfort and insight from reading it. For one, I became more willing to introduce and enforce some dietary restrictions for The Dude. As you’ll probably notice if you keep reading, I really struggled with the food restrictions. I come from a long line of food pushers (Hi Mom! Are you sure I can’t get you anything?) and folks who celebrate with food. The idea of forbidding my child to eat candy, cake, ice cream and the like was sad to me. I felt like I was robbing him of some of the joy of childhood. Luckily, my husband, who also follows some specific dietary restrictions, didn’t struggle with this part of the recommended treatment plan for The Dude. He consistently reminded me how important it was for us to help him and that these food guidelines could be an integral part of helping him get better. I followed along reluctantly because, more than anything, I wanted my son back and I wanted him to be able to be happy and healthy. If food was the price, we’d pay it.
At this point in the game, we were only restricting food dye, gluten and dairy. Over the course of the next year, we would also be advised to remove corn syrup from The Dude’s diet. If you aren’t aware by now: if it tastes good, it has gluten, dairy, food dye or corn syrup in it! Luckily, my son was only 4 and still pretty malleable in the food department. As we switched him from macaroni and cheese to dairy-free, gluten free mac and cheese with no yellow food dye…he barely seemed to notice. We were able to find almond milk ice creams that were passable to him and gluten free donuts and cupcakes that made him feel like he was still getting ‘treats.’ Candy was the biggest struggle. 5 years later, I have lots of sources for candy that meets his dietary guidelines but, at the time, we were ‘taking away’ Skittles, M and Ms and Starburst. That’s super hard to explain to a four-year old and was a tough pill for me to swallow. As late as last year, The Dude and I were talking about things he would change in the world and in his life. He mentioned that he would ‘get rid of his PANDAS.’ I was saddened by that answer but thought I understood. When I asked why, however, he responded, ‘Because Mom, I really want to try M and Ms!’
And, don’t even get me started on other people. My mother became a one-woman food investigator…constantly showing up with new foods that met (or that she thought met) his dietary requirements. We had some hits and some misses and some ruffled feathers on both sides of the table. My mother-in-law still doesn’t get it and we have resigned ourselves to just taking food to her home whenever we visit. Outside the house, in restaurants and at birthday parties and the like, there was a lot of explaining. I once made the mistake of telling a server that we didn’t want bread because my son has a ‘wheat allergy.’ He (kindly) brought the bread anyway because ‘this is sourdough, not wheat.’ We stocked The Dude’s pre-K and kindergarten classes with acceptable snacks and were really touched as 4-5 year olds started coming up to us saying, ‘Mrs. Navin…does this have gluten?’ We got emails from parents late at night saying that their daughter was in tears because she was bringing popsicles for her birthday and just realized that The Dude couldn’t eat them. It took a village…and luckily, most of the time, we had one.
On top of all of the food drama we were introducing, there were supplements for The Dude to take several times a day. As I mentioned last post, these included Enhansa, fish oil and magnesium to start as well as a special liquid vitamin and a liquid mineral blend. While I cannot stand to even get the fish oil on my hands, The Dude swallowed a small dosing cup 1/2 full of the liquid twice a day without complaint. He still does so today and every time I see him do it, I’m shocked and appalled. But we were lucky – the boy doesn’t balk at fish oil.
The Enhansa, magnesium, vitamins and minerals were a different story though. The Enhansa and magnesium came as capsules but there was no way The Dude (at 4) could swallow them. The vitamins and minerals were apparently not tasty and we couldn’t get him to drink them easily. Those difficulties led to almost 3 years of mixing concoctions in almond milk and/or 100% juice 2-3 times a day. We poured capsules into milk, broke capsules open to store the powder and distribute it with a little scoop, refrigerated liquid vitamins and minerals and administered it all every single day in a sippy cup. I’m embarrassed to say that, for this very reason (i.e., it’s much easier to shake up a concoction in a sippy cup than stir it) The Dude used a sippy cup for his morning and evening beverages until he was over 7 years old. I joked with my husband that, if the police ever broke into our home for any reason, the powders and empty capsules and scrapers, etc. would have them convinced that we were operating some type of drug lab. Travel was a nightmare as we were constantly loaded down with bottles of supplements that had to be reviewed by TSA and needed refrigeration.
Luckily, The Dude is (as I’ve said) super easy going and never objected to taking the supplements. Even as the list got longer (I’ll update you about what was added as we go along) he only ever refused to take one supplement. I can’t remember what it was called but, in his defense, it smelled like vomit and must have tasted similarly. The doctor didn’t even object when I suggested that that supplement wasn’t going to work for us – she must have known that it was repulsive and quickly prescribed something else!
Apparently, I’m feeling wordy today and haven’t even gotten to the first blood draw part of our story. I’ll be sure to cover that and the results of that draw and what they meant for us in my next post!