Diary of a Naturopathic Mom and Two Boys with PANDAS

Chapter 1 – My life By Accident

Chapter 2

It’s Raining Men

After 2 years of watching the weather forecast in Ontario and the slow pan out to the Maritimes where I was building a successful Naturopathic practice, I was ready to move home. The plan was to practice with my sister who was thriving in Burlington, Ontario. A surreptitious campaign by my mother and sister had been in place since the moment I planned my move to Halifax, Nova Scotia. Phone calls, visits, and plane tickets home. It was a well-planned strategy that had me back in Ontario just in time to meet my first male surprise.  

I moved back in with my mom, every post professional student’s nightmare. It was not that I didn’t enjoy my time with my mother, the opposite in fact. It was that it was a sign that my combined undergrad and post graduate education still couldn’t afford me my own place. I promptly decided that I needed to get out there. Make some friends in the area, date and start to build a practice.

The dating went well. Surprise man number one became surprise husband number one and only. Then plans to travel and vows to get to know each other even better were put on hold for my surprise man number two.  

Rowan

Even typing his name brings tears to my eyes because… well… he changed everything. Rowan was the tool that made this mama tree and Naturopathic Doctor into a canoe, that in time would be needed to navigate the rocky rapids of PANDAS. I believe they call this type of tool an adze.  

Our parenting journey with Rowan forced us to dig deep into our belief systems and nurture endless patience, creativity and persistence.  We followed our intuition, the most current medical research and with unwavering tenacity, accomplished what the majority of PANDAS families can’t imagine… recovery.

As a Naturopathic Doctor, I wanted to plan and prep for my pregnancy. I knew the rates of developmental issues and birth defects were on the rise. I, myself, had struggled with issues of attention and focus through my whole childhood. I knew that overwhelming evidence pointed to environmental toxicity as a major factor detracting from fetal health. 

This, it turned out, was not to be our path.

Rowan never stopped moving in my belly. I loved it! For a first time, neurotic mom, feeling constant movement was re-assuring. It wasn’t until my second and third pregnancies, that I realized Rowan’s phrenetic movement was the first sign of a brain on fire. The first three weeks of Rowan’s life, all I did was hold him and look at him. He was so gorgeous. He held his head up within days of entering the world, as if he couldn’t get enough information or stimulation. He was happiest when he was upright, outside an in motion.  

Rowan ate voraciously and spit-up impressively… in staggeringly large amounts. He had difficulty self-soothing which resulted in lots of sleep issues and a need for constant feeding and snuggling. It was as if I was still pregnant. And again, I loved it. I felt I had the tools to support him and keep him safe and happy. From the moment he arrived, he sought me out to calm and comfort him.  

This is typical for many babies and some “high needs” babies take this to a new level. Rowan was an “ultra-high needs” baby. He woke every hour for months and months. He was colicky, demanding, hilarious, charming and incredibly intelligent. Everything delighted him (and does to this day). His curiosity filled our days as he strived to learn and master everything in sight. Our nights were spent soothing his discomfort and waking with every hour to replenish the milk that he so easily spat up.

For many months, I was too tired to put his Rowanisms into a category. Many Naturopathic Doctors, are not “into” labelling so I wasn’t desperate to slap one on but I did want to understand why he was so different from other babies. Rowan was happiest (and his happiness is infectious) when all eyes were on him. His mischievous smile, which his little brother also shares, could be seen as he scaled counters, couches, stairs and cupboards. 

We visited the park 3-5 times a day in an attempt to tire him out. From a very young age, he woke at 4 am, his unbounded eagerness drawing us out for long walks. Even with all our efforts to help Rowan burn off his abundant energy stores, he struggled to sleep unless he was in motion. 

In a stroller initially but he quickly gravitated to being wrapped up tight on me in a moby wrap and taken for long walks. Out of desperation we began to take long drives to facilitate naps and to get some semblance of a break from Rowan’s growing intensity. I thought many of these things were normal but in combination, they were flags for issues he would experience later on.

At 11 months, his immeasurable energy stores and lack of sleep were starting to take a toll on me. Rowan’s excitement over new things and toys was short lived so we searched desperately for things that would hold his attention for longer periods and give us a much-needed break. There were few places we could go that set him up for success. We began to feel that every trip to get groceries or to attend family parties was too stressful to contemplate.

When Rowan turned one, we had a party. We had, to date, not allowed Rowan to have gluten or dairy. When I look back, I am horrified and guilt ridden that I would help him celebrate his first birthday with a food that would later cause him to have tics and anxiety. Rowan had his cake and party. We all delighted in what a wonderful little man he was becoming.  

The next day, was the worst day of his life. He had dark circles under his eyes, he had trouble running, falling frequently as he tried to get up to his normal speed. And couldn’t handle any hint of the word no. Again, many might say, “typical” for his age but as he cried through much of the next week, I hit my breaking point. Tantrums took on a new level and my mommy fatigue was turning quickly into postpartum anxiety and depression. This was within weeks of his first birthday.

This was a dark time for me as a parent. I was too tired and overwhelmed to properly advocate for Rowan so he was eating gluten and dairy periodically. Anxiety and guilt intensified my failure bringing my inability to keep him on a clean diet into hyper-focus. Mat and I wanted Rowan to have a sibling and hoped that they could be close in age. We made the decision to try to get pregnant and were blessed when it happened quickly. 

Desperate to avoid hour long tantrums we gave in to Rowan more and more. If he wasn’t allowed to climb, jump or run he got very upset. He started to bang his head and face on the floor for seemingly no reason. We were exhausted and worried. It was beginning to dawn on us that Rowan’s development was not on a normal trajectory.


Is this OCD?

At 15 months, Rowan’s only words were Daddy, Ma and Tractor. Yes, tractor. He became obsessed with all types of tractors and would practice saying the word over and over until it was perfect. He repeated that pattern with lawnmower, combine harvester and excavator. Our trips to the park and long drives became tractor focused as Rowan’s fixation guided our outings.  We began to suspect that part of his intense tantruming was the discrepancy between his receptive and expressive language. He seemed to understand EVERYTHING and was highly intelligent, already beginning to master his ABCs. Yet, his words weren’t coming quickly enough to help him get his needs met. We taught Rowan to use some sign language which helped take the edge off some of the meltdowns. Don’t get me wrong, the tantrums continued. Just not about every single thing.

One day, we attended our niece’s school fair. Rowan was in heaven. New people, new things and lots of stimulation. A dream afternoon for tired parents. It was becoming more common for Rowan to get “stuck” on things. Toys, shows, songs. We noticed it first when he was a very small baby who would only be soothed by the Louis and Bram, Elephant Song. He would be calm and quiet for as long as you could sing it or stand to have in on repeat. When he wasn’t been soothed by the familiar song, he would scream for long periods making car trips a nightmare, unless he was (thankfully) asleep.  

So back at the fair, our little man, fell in love with a yellow push cart. It was well used but all proceeds went to our niece’s school so we decided to bring it home. Well, nobody had change for a $20 and it seemed silly to spend so much on an old yellow push cart but Rowan would not be deterred and we were stuck in sleep deprived parenting mode which led us more and more down that path of least resistance.  

Home we all went with the $20 yellow cart.

Rowan has always loved to move fast. He crawled fast and now he now runs and skates like the wind. Rowan and his cart became one in an endless loop through the kitchen, hallway, living room and around again. He completed his circuit with incredible speed and a look of elation on his face. At first, we delighted in his enjoyment. We talked about the track star that he would be (and not surprisingly became). The route took on an obsessive nature and we started to worry about the frequency that he sought out the cart. When we went the park, he would try to bring it with him and if denied, would fall to the floor and smash his face on the ground and well… he would scream and rage.

There are those of you who, at this point, are probably thinking, tantrums are normal. “All kids get hooked on things”. Others with training in child development and behaviour may be saying we created a monster by giving into Rowan so often. Well, you are all probably right in many ways but it was around 18 months old that I began to realize that Rowan’s brain was on “fire”. His fixations and repetitive activities were calming a brain that was crying out for help. And we were trying to slap every band-aid on that we could but we weren’t treating the root cause. 

The yellow cart obsession was joined by a Wonder Pet obsession. He wanted to have the show on whenever we were in the house and if allowed, would watch it for shockingly long periods. On the advice of a friend we brought Rowan to see his chiropractor to see if regular adjustments could help.

People had said that everything Rowan was experiencing was normal. When Chiropractic adjustments worked, it meant things weren’t normal. There was something physiologically and medically wrong. Rowan’s tantrums lessened. Our energy and moods improved. Little by little, we began to identify supports. And with each success we found a deeper well of strength and perseverance as we forged a treatment path without a clear diagnosis or any acknowledged supports. We were running on instinct and relying heavily on my Naturopathic training to fill the gaps in our understanding of what was happening with our little man.

We put in a very strict but effective sleep routine that meant Rowan needed to be in bed by 6 pm. Better energy levels allowed us to be firmer about his diet being free of gluten and dairy.  We were more consistent with supplements like fish oil and probiotics. And we continued seeing Rowan’s chiropractor and expanding his use of sign language.

Around 20 months, Rowan picked up a nasty bug that developed into pneumonia. After a round of antibiotics, he became very constipated. He would scream in pain and push desperately to have a bowel movement. We had removed dairy from Rowan’s diet at home but continued to struggle in social or family situations. We were already the crazy parents who put their kid to bed at 6 pm sharp! Arguing about a small bit of cheese wasn’t something we felt we were ready for but finally, we came to the realization that no matter the push back… Rowan couldn’t manage ANY dairy at all.  It wasn’t a treat.  It wasn’t a reward. Small amounts weren’t okay.  Dairy hurt Rowan’s belly and when Rowan was in pain, his behaviours intensified.  

We were coming together as Rowan’s parenting team and starting to advocate and fight for what was best for him in all situations.  

It wasn’t easy. Nobody seemed to understand the intensity of what we were experiencing and although our supports for Rowan were helping, he was still struggling significantly. We felt more and more isolated because the path to recovery was ours alone to discover and the supports that we put in place often put us at odds with friends and family who, rightfully so, couldn’t grasp the magnitude of what we were going through as a young family.


Sonya Doherty, ND, FMAPS (Cand.)
Doctor of Naturopathic Medicine
Chief Medical Officer at Treat Autism

Stay tuned for Chapter 3

Chapter 1 – My Life By Accident