Christian was born in 2007-a happy, healthy and thriving little boy. He is the middle of our three boys. The first three years of his life were uneventful. Looking back, it was easy, really. He was rarely sick or had fevers, unlike his older brother who seemed to get a high fever with every virus he caught. Little did I know, not having fevers was a warning sign.
Christian had his first case of pneumonia at four years old. Within four months, he had two more bouts of it. Each time, his coughing was incessant. His pediatrician referred him to pulmonology, who diagnosed him with asthma. It was an atypical asthma though, as Christian’s airways were “huge”, as the pulmonologist called them. He never struggled for air but the cough was a huge problem. It exhausted his body, was interruptive to his sleep and his everyday life. He started a preventative inhaler along with an asthma action plan. This plan worked well unless he got sick and then he usually ended up on steroids. It was a circular and reactive plan, beginning over and over again with no end, but it was working for us at the time.
Before kindergarten, Christian got his set of five year vaccines, including DTap. The next day, I did not recognize my happy child. He was very immature and angry. We struggled.
This persisted for a few days. I noticed a large, swollen spot on his arm where he had received the vaccines – a painful infection. He quickly started antibiotics and my sweet little boy was back. I was so grateful. As we went about our days, I began to notice a more subtle change. My son had developed a low frustration tolerance and was quick to anger. This crept into the back of my mind as he started elementary school. In addition to all the typical nerves a parent has when their child starts school, I was also worrying about angry outbursts and behavioral issues.
He sailed through kindergarten and moved on to first grade. He had a few small instances of impulse control issues, but the teacher reassured me that it wasn’t a major problem. At the time, I agreed. It was during second grade, on spring break, that I knew there was something more to his story.
We were in Florida on vacation and crossing a busy road. We held hands and waited for traffic to clear to cross. When a car came quickly around the corner, Christian’s grandfather instructed everyone to “hang on.” Christian didn’t process the directive to stop quickly enough and stepped into the road. Tires squealed and he came within terrifying feet of being hit by a car. My intuition told me we needed to have him tested for auditory processing and ADHD.
We had him tested at a local learning center and they diagnosed him with ADHD. I wasn’t surprised or sad, but rather relieved that maybe we could have a plan to help him not be so quick to anger. We began a low dose stimulant and it changed his life (and ours) for the better. He felt more capable, happier and successful. Life was good!
In November of 2015, I took a trip to Chicago for the weekend with friends. While talking to the kids on FaceTime my husband said, “Christian has a really sore throat and a slight fever.” I just told him to keep an eye on it. When I got home on Sunday, I saw his throat and smelled his breath and knew it was strep throat. He had never had strep before. I took him to an urgent care, where he was tested and diagnosed with strep. Antibiotics were prescribed and we were on our way home.
Two weeks later, I thought to myself that maybe Christian needed an increase in ADHD medication dosage. He was not himself and acting very immature, unresponsive to discipline and so angry. Additionally, he was making involuntary low volume grunts while watching TV. Day by day, his symptoms got worse. The day before Thanksgiving, he was having full blown tics and unintentional jerking movements and verbal twitches. This was completely involuntary. My son was not in control of his own body.
I called his pediatrician, who said simply said it sounded like Tourette’s syndrome. As his mother, I knew this wasn’t true. These symptoms came on so suddenly and he had no history of these spasms and noises. I spent the rest of that day researching bodily tics, while both brothers were frightened of the noises and movements Christian was making.
I happened to Google “sudden onset tics”, and something new popped up. P.A.N.D.A.S. stands for Pediatric Autoimmune Neuropsychiatric Disorder After Streptococcus. My heart sank and I think at that moment I knew. My son had just had strep a few weeks ago.
A quick call to his pediatrician and she said to bring him in for a strep test right away. It was positive. His body had never gotten rid of the bacteria.
He started a new antibiotic that day. The uncontrolled body movements went away while on the antibiotic, but sadly, when the course of treatment was finished the PANDAS symptoms restarted. Our pediatrician reluctantly prescribed another course of antibiotics. Again, he was fine on antibiotics but when the 14-day course was finished, we were back where we started.
I researched exhaustively. Finally, armed with my research and persistence, Christian was diagnosed formally at the University of Minnesota. The PANDAS specialist there said, “These are the worst tics I’ve ever seen.” We had a diagnosis. We had validation and hope.
She prescribed prophylactic antibiotics for Christian. Hungry for more information, I joined a local Facebook group for other parents of kids with PANDAS. Bit by bit, I collected as much information as I could about this autoimmune disorder. Our pediatrician was supportive of treatment but not experienced with PANDAS. Thankfully, she was willing to learn.
The next year and a half was fine. And by fine, I mean steady. He spent an entire school year on antibiotics, which we think helped stave off strep and kept his tics and other symptoms at bay a lot of the time. But he wasn’t really better either. He still had major behavioral swings when exposed to any illness and horrible swings when exposed to strep. Unfortunately in elementary school, exposure to strep is almost constant. Another problem we ran into was that the constant use of antibiotics were killing his gut bacteria balance. He contracted C. Difficile, a dangerous bacterial infection, twice while on antibiotics. In February of 2017, he had a virus and didn’t recover after antibiotics like he usually did. He also started to stress about school and struggled with classes that weren’t a problem for him previously. His teacher said she didn’t even recognize the kid he was. I knew there had to be a better way. He needed to get BETTER. We were only keeping him status quo on the antibiotics and status quo is not where my child needed to be.
Through the PANDAS Parent Facebook page, I had learned about a functional medicine clinic that was treating kids with PANDAS very successfully. It was very close to us. The problem? They didn’t take insurance and they were very expensive. My husband and I talked it over and decided it would be worth it to try this clinic.
One of the best things about functional medicine is the critical evaluation of labs. Through bloodwork done on Christian, we uncovered that he had undiagnosed Lyme disease. Lyme disease taxes the immune system and was an issue the entire time, but we never knew. This diagnosis was our line of demarcation. This is when true healing began.
Through different modalities including a new cocktail of antibiotics, nutritional testing, supplements, probiotics and Low Dose Immunotherapy, Christian has made HUGE progress since starting with this functional medicine clinic. He has had an amazing fifth grade year. He has many friends, does his homework without stress, helps around the house and is happy. He is NOT on antibiotics and hasn’t been for 8 months. He hasn’t been on steroids during an illness since starting with our functional medicine doctor and he only uses his inhaler occasionally!
Recently, he got influenza. Instead of behavioral symptoms, Christian had a FEVER. A high one! A normal immune response!
Had we not sought out functional medicine, I think he would be in the same antibiotic cycle that he was a year ago – status quo and not thriving. The knowledge about whole body healing that we have received through functional medicine has made all the difference.
We were so fortunate to be led to see the whole picture and to be able to afford to do this for our son, but so many cannot. No child should be turned away from thriving health and happiness due to a lack of knowledge and financial resources. My wish is that all of these chronically ill kids can explore the benefits of functional medicine which is why I support the work of Hope Rooted.
Allison Baker- Mother to Christian