When my 8 year-old son, Luke, was diagnosed with ADHD in November 2008, I started educating myself on ADHD with all the basic "first-line" books recommended by our doctor: Russell Barkley's and Edward Hallowell's . While I felt Taking Charge of ADHD was too basic after first doing some online research (and entirely too heavy on token/reward systems), I was an instant fan of Dr. Hallowell, actually reading first his . I plan to read that one again soon.All of the books your doctor likely recommends you read to learn more about ADHD detail the approach to ADHD treatment of conventional Western medicine. If it looks like ADHD, walks like ADHD, smells like ADHD, it must be ADHD. "Get your child in therapy and let's start trying stimulant medication to see if it will help." In traditional US healthcare, there isn't any search for the "why" or the underlying cause. You get what I'll call a surface diagnosis and then you treat the symptoms. There's no further investigation into the cause usually. Insurance won't pay for that, if you're lucky enough to even have insurance.
Once I read the "first-line" books on ADHD, I began to read other books. I have been so obsessed with ADHD since Luke's diagnosis I have read dozens of books on the subject. At one point his therapist put me on a self-help restriction and asked me to stop reading these books for a month. I read a novel for a couple weeks but reverted right back to reading all about ADHD -- that's the only way I know to find new ways to try to help Luke.
When reading this many books on ADHD, you start to get into the less mainstream theories and treatments. The first alternative book I read was , by Dr. Kenneth Bock. That was well over a year ago. While I found the content and his approach to treating these disorders intriguing, I felt it was a real long-shot that any of his approaches would help Luke, and our insurance won't pay for the thousands of dollars of medical testing prescribed in this approach, so I pushed it to the back of my mind.
I pushed it to the back of my mind, but it kept crying out for more attention from me. I continued to read countless articles on the Internet and felt more and more that maybe there was more to treating Luke's ADHD. During this time, we continued to struggle with medication to effectively treat Luke's ADHD. Concerta works fantastically for a couple months then greatly looses effectiveness. We tried Straterra, Intuniv, and antidepressant and found worse complications. (If you want to see a full chart of all meds we've tried, their dosages, and the side effects Luke experienced, some significant, send me an email and I will share it with you privately.) We didn't have any idea what to do. Meds weren't working, school was getting worse, the dysgraphia was a growing complication, and we were all just plain unhappy and stressed out.
I began to really take note that Luke was experiencing some allergy symptoms. He has what's commonly known as "allergy shiners," chronic dark circles under the eyes. He also has rosy cheeks and red ears frequently but I didn't equate them to allergies yet at that point. As well, he has struggled a bit with digestive issues. At the same time, I reading articles on food allergies and sensitivities and how they can exacerbate behavioral issues and present with these mild allergic symptoms, hard to pinpoint as food intolerance. So I finally asked Luke's behavioral health pediatrician about doing an IgG test for food sensitivities. I know there's a lot of debate in the medical community about whether this test is accurate, but I wanted to see the results and be able to put the possibility of food intolerances out of my mind. IgG testing was not something our doctor was familiar with so he referred us to the Integrative Medicine practitioner in the same office (it's where we see the therapist, have neuropsych testing done, and see a doc for ADHD management).
I knew there were many facets to the integrative approach to treating ADHD, but I had no idea how complicated and overwhelming it can be. A the first visit, we spoke about Luke's history and symptoms and I gave her a copy of my meds trials chart. She was blown away by the organization of all of that information, while I felt there were a lot of holes in my journaling of side effects and exact trial dates. I know I am a lot more organized with this stuff than most parents.
Her first inclination was that something else is going on in Luke's body. There has to be a reason we've tried every stimulant and some other meds for ADHD and not one has been successful for more than two months. While I was hoping to try a different medicine at that meeting to try to help Luke with a deteriorating school situation, she felt we needed to step back and look elsewhere first.
She held the meds trial chart up in the air, "we don't want to do this to him anymore."
I couldn't agree more. Her pointing it out so pointedly brought tears to my eyes. Of course we don't want to keep seemingly using him as a guinea pig. Of course! So what do we do?
At the first meeting, the decision was made to
We met again almost three weeks later to discuss the results of the blood tests. Here's what we found:
Yep, we're now a gluten-free (GF) household. Today marks one week since Luke went gluten-free. The rest of the family eats gluten-free when eat together at home but Daddy, Emma, and I don't limit gluten when ordering in a restaurant or when not with Luke. Since the IgG test can be unreliable, I view this as a trial. If he's better without gluten, we'll know it's the right thing for him. If not, we'll discontinue the diet after four months.
Going gluten-free has been easier than I expected in some respects and much harder in others. Easier in that Luke has been pretty agreeable to the change most of the time. We have not yet had one full-blown meltdown over wanting a food he can't have. He was angry the first few days. He even told me "I'll never love you again for doing this to me, Momma!" once. But it hasn't been nearly as bad as I feared and it has gotten a lot better in just a week. Cooking gluten-free was harder than I expected though. I've spent about $300-400 on GF foods, replacing most baking items and snack foods. I also spent $50 on two GF cookbooks ( and ) and I feel like I need several more. It's not as simple as just swapping out traditional flour for a GF flour -- for recipes to work right, you need a mix of GF flours and starches and all are not created equal (as I learned from the chocolate chocolate chunk cookies that left tiny pieces of rice stuck in my teeth). There's an enormous learning curve.
We are trying to keep the change as minimal as possible for Luke though. We have a busy evening schedule a couple nights a week that require us to eat dinner out. We've gone to the usual restaurants and found something Luke could eat (lots of cheeseburgers without the bun). We've even had GF pizza from a local pizzeria. That's definitely been easier than I expected. Fortunately, we love in a small, artsy, forward-thinking town with lots of special diet options.
Next on our testing agenda is Organic Acids Test (OAT). It will test certain enzyme levels, cell function, toxicity, etc. We are doing just one test at a time as they are expensive and insurance won't touch them. This test is $240 and the IgG was about $150. I have the kit and will be collecting and shipping it off this week. We meet the doctor again May 23rd for results of this, to analyze if we see improvements with the GF diet, and discuss what to look at next. I have my sights set on a genetic panel and I think she does too ($400).
I share this journey with all of you because I know many of you have read about this approach and wondered if it's right for your child. Only you can determine that. I'm not sure myself if it will lead anywhere for Luke. But I feel like I'm doing the right thing by digging deeper to see if there's more too it.
Interestingly, at each IEP meeting we have, someone on the team says that Luke is a really complicated kid. Maybe there's more complexity to discover in his physiology too.
Editor's Note: Always consult your physician before giving your child supplements or making significant changes to their diet. All of the supplements listed above were provided as examples of our personal experience and should not be construed as advice. I am not a healthcare professional.