I made mention in several forums that our son greatly improved with the Specific Carbohydrate Diet and, as usual, it was met with quite a bit of skepticism and negativity. It’s ok. I’m cool with living on the fringe. Several parents even told elaborate stories about how they “tried” it and it didn’t work, so they didn’t recommend that anyone else go to the trouble.
But do you want to know the ugly truth behind it? IT’S HARD. And that’s why so many parents make half-hearted attempts (with good intentions, of course) and then give up. I don’t blame them. I get it. For the first few weeks we started Tyler on SCD I felt like setting up a cot in the kitchen. And I am only half kidding. The cooking however, is only one piece. When you factor in the research involved, the time spent reading labels, the added expense of stocking your newly revamped kitchen, your child’s particular food preferences and the fact that your kid will likely eat more while on the diet, it can be downright overwhelming.
Thankfully, as a health and wellness writer, I had several years of study under my belt while researching my first book (shameless book plug here) and I continued to maintain an interest in the subject in spite of shying away from my speaking engagements, blog, etc.
So, why are we talking about diet again? Well, you may have heard of the gut-brain connection and if you haven’t, I would highly recommend a google search. But today, a huge story made the AP rounds and happened to circulate in my Facebook feed. That story gave a recounting of an autistic child who improved significantly while taking antibiotics. (See story here) Long-term antibiotic use is also the current preferred form of conventional treatment for PANDAS/PANS. But let’s look at the implications of this. Why do antibiotics work in the first place?
Antibiotics are designed to kill bacteria. In PANDAS kids (as well as anyone else), they kill off the Streptococcal (strain A) bacteria as well as any other bacteria that may be residing in the body. As a result, many kids improve almost immediately. Fantastic! Or is it? While many kids improve initially, their doctors have to choreograph a complicated dance with drugs as the kids’ symptoms wax and wane. Their bodies acclimate to the antibiotics and the bacteria begins its’ hostile take-over once again. The end result is multiple trips to doctors and psychiatrists and specialists and voodoo witch doctors all over the country with a mixed bag of results.
The reason these kids temporarily improve is due to the fact that while they are ridding themselves of offenders, they likely aren’t getting proper fuel to allow their gut to heal. Sure, many docs are intelligent enough to prescribe a probiotic, which is helpful, but a probiotic alone cannot heal a gut that is constantly barraged by sugars, simple carbohydrates, and other gut destroyers.
It is my firm belief, albeit substantiated by mounting evidence, that PANDAS is not actually caused by strep, but by a depleted internal biome in which strep becomes a willing opportunist. In other words, not causative but opportunistic.
This is where diet becomes of the utmost importance in order to bring about complete healing. And I am not simply talking about turning to the newest gluten-free shelves at your local grocery store. These mostly contain rice and corn flour, which are just as damaging, if not more so. I mean you must be vigilant and you must be firm. You must dissect every single label. You must explain to your entire family the importance of this diligence. You must (initially) become a home cook even if you are not. You must be willing to tell your child ‘no’ and explain the reasons behind it. And that last one can nearly kill you when your child cries big crocodile tears over feeling left out at the class Valentine’s Day party because they couldn’t have a cookie.
I firmly believe that virtually every child will improve on a grain-free, starchy vegetable-free, sugar-free, dye-free, mostly dairy-free, preservative-free diet. Will their symptoms disappear completely? Maybe. Maybe not. But aren’t our kids worth the effort? It takes complete dedication and I understand that this is difficult, but I have seen the results with my own eyes. I hope that my writings might ignite a strength in others. I say this all with love and the utmost compassion, but also with the honesty that comes with personal experience.
Hugs and Healing,
P.S. I rely heavily on several blogs and cookbooks for recipes and meal ideas. My personal favorite is Danielle Walker’s Against All Grain. Though she does not do exclusively SCD, her recipes have sparked many ideas for me and I constantly check her site before any others.