Diary of a Naturopathic Mom and Treatment of PANDAS
Chapter 3 –Is this autism?
While learning about treatment for PANDAS we often wondered if we were dealing with autism. As Rowan got older, he got easier and harder. It seemed his language really increased around the 20 month mark but he was still struggling. And that is really the word for what was happening. He was like a purebred colt being held back by ropes. There was no reason a kid who could master all types of playground equipment should cry when you put him on the swing. It made no sense that he could run with great power and speed but couldn’t bear the going down the smallest slides at the park.
Rowan also struggled with wearing any clothing except for PJs. We didn’t understand the pajama obsession until much later. For us, we didn’t have the energy to fight about what he wanted to wear. There were so many battles, changing out of PJs didn’t hit the top 10. We thought Rowan was willful and wanting independence. So he wore PJs or shorts and a Superman shirt most days of the year. Coats were a no go. Snowsuits were tough but he loved playing outside so much that he seemed to endure it. For the sake of being free to run wild.
From hard to harder…
Our daughter was born in December, 2008. The day she was born, Rowan entered into what I describe as post traumatic sibling disorder. Illyana’s birth threw him into a downward spiral. It was as if all the gains we had made were lost and the loss then doubled. The first time he saw me nursing Illyana, he put his face in his little hands and cried “my milk”. His tantrums returned and now included vomiting.
Many children go through a period of rejecting their mother when a sibling was born. Rowan stopped sleeping the day Illyana was born. He developed what we now know was a massive amount of separation anxiety. His Dad slept on the floor in Rowan’s room for months. He had to stay in his room until he was 100% asleep which could take hours. Ro woke frequently again in the night to check if his Dad was with him. And began to wake up very early, before sunrise.
At this point my relationship with Rowan did a 180. He would only interact with me to try to breastfeed. I had decided that I would tandem nurse because I feared stopping would make Rowan feel rejected. I tried to always give Rowan time with me before, during and after breastfeeding our baby girl. It seemed to never be enough. If I had to feed Illy first, he couldn’t cope. He cried until he threw up. If I had to ask him to come off the breast, he did the same. I tried giving him as much time as he needed.
The result, he didn’t come off. There seemed to be no solution. If he wasn’t nursing, he was seeking out his Dad with a frantic intensity. Or trying to get my attention away from the baby by making behaving in ever escalatingly unacceptable ways.
Children who need treatment of PANDAS are very intense:
Many parents have experienced similar situations. It is always the intensity with Rowan that is seemingly unbearable. It was every minute of every day for the first 6 months of Illyana’s life. Rowan didn’t want to go to daycare. I had to carry Rowan, kicking and screaming in one arm and the Illy in the car-seat bucket and daycare bag in the other. Me trying to hold back tears… and not always succeeding.
I became an expert at extracting Rowan from situations… grocery stores, Costco, drop-in centres, playdates; you name the place, it is likely an intense tantrum had driven us out. Rowan kicking and screaming, slung over my shoulder in a secure firefighter carry. Me, sweating and fighting a sense of overwhelming despair. One day, after meeting my mom at Tim Horton’s, I was forced to carry Rowan out. Now, let me pause to say, taking a child who isn’t allowed gluten or dairy to Tim Horton’s in unfair.
Two kids later and close to 10, 000 patients with autism and other developmental diagnoses, it is not something I should have done so the tantrum is on me. I try to make myself feel better in this memory by telling myself that while I drank tea, he had some apple juice. Now that apple juice has been identified as having higher levels of arsenic in addition to 6 tsp of sugar; I just feel sick about the whole day.
So, I am doing my Rowan removal routine. If alone, I grab everything (including Illyana!), with him under one arm, then transfer him to my shoulder and off we go. My mom was there so I asked her to grab Illy and meet me by my car where she found me wrestling Rowan into his car seat. I am not sure what it was about this day or this tantrum but I started crying and my mom blurted out “You need to inject him with B12”. I had been giving him oral B12 supplements, as I had with other children who needed developmental support but I hadn’t thought of injections because, well, that what I used for kids diagnosed with autism!
Grandma to the rescue! Treatment of PANDAS takes a village:
Well, a big smooch out to my mom because after a discussion with Rowan’s dad, Mat, we decided that as long as it wouldn’t hurt him, we would try anything. After one injection, Rowan’s language exploded. It was almost unbelievable!!! He finally had words to describe the sensory issues he had been having, probably since birth. After a few weeks doing B12 injections, he was able to tell us “wind hurts ears” “afraid slide”, “sock strings hurt” and finally an explanation for the dramatic benefit seen from chiropractic “head hurts”. Methlyl B12 injections gave him words to describe what as upsetting him but also started to treat one of the root causes of his concerns… sensory overload.
As my practice was growing, I was realizing how incredible biomedical treatment could be for improving both quality of life and development for children diagnosed with autism. I was seeing phenomenal gains in the children that I worked with and decided that, if possible, I would only treat children on the spectrum from now on, dedicating myself to knowing everything there is to know about biomedical treatment. Wonder where Rowan’s obsessive nature comes from?
What can autism treatment teach us about treatment of PANDAS?
I had the privilege of training with the Autism Research Institute to become a DAN! (Defeat Autism NOW!) doctor and was spending the bulk of my work day either seeing children on the spectrum or doing research on the medical aspects of autism that decreased quality of life and impaired developmental potential.
It seems so silly now, to look back and think that I used to have dramatically different treatment approaches for children with autism versus other developmental concerns like ADHD, speech delay, OCD and sensory processing disorder. I knew that there are physiological, biochemical and metabolic similarities; I was just hyper-focused on autism… not the spectrum of developmental differences that kids experience. Learning about autism helped me understand treatment of PANDAS in a very unique way.
Sensory issues, autism and treatment of PANDAS:
Ninety percent of children diagnosed with autism have sensory issues. When we realized that sensory issues were a significant contributor to Rowan’s tantrums it gave us a sense of clarity and confidence.
Rowan was extremely social, unlike many children with autism but he had severe sensory issues, tantrums, rage, fixations and OCD like behaviour. He was quickly surpassing his peers in terms of expressive language and showed no other signs of autism. Sensory issues, not matter what the diagnosis, are medical and I was quickly learning in my clinical practice that medical issues could be improved with biomedical treatment… and so our personal family journey with biomedical treatment of PANDAS began!