I am very excited to introduce this guest post from Heidi McDermott, who reached out to me on Facebook about PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep).
She graciously agreed to write out her personal experience with OCD and PANDAS. Enjoy!
In 2008 we lived in upstate New York, and had 3 fun, busy, little kids. Connor was 4, and loved cars, soccer, and dirt. Brooke was 3, and couldn’t get enough pink in her life, and Brian had just turned 1 and was doing his best to get up and running to keep up! One day, out of the blue, something changed. It was like a light switch had been flipped. Suddenly Connor was like a different person. He started asking me questions about death, in a shaky scared voice.
“Mommy, if you die will God let me talk to you again?” I didn’t know where that was coming from, I wasn’t even sick, nor could I think of anyone close who had passed away recently. At the same time he started refusing to play outside. When probed he revealed that it was because he was terrified that there could be poison berry juice, and if it touched him, he could die. It might seep up through the cracks in the sidewalk.
What?!! We were supposed to be starting swimming lessons, (which he had been so excited to sign up for the week before). After forcing him to the car and to the pool, thinking seeing his friends and the water would remind him how much fun he’d have, I couldn’t even get him to leave the locker room without his shoes on. He was in a full on panic about the poison berry juice that could touch his feet. Needless to say, he didn’t learn to swim that day.
He also refused to sleep in his bed that night. He sat on the top step, huddled in fear, insisting that he could see a bear climbing in his (2nd story) window. He wasn’t just making excuses, we could see in his eyes that he was honestly terrified. It was breaking my heart! What was happening to my boy?
OCD? Or Strep?
The next day the the fears continued, only now there were new behaviors added. He wouldn’t leave my side. When he started making odd confessions to me over and over, I knew I had to figure out was going on. I can still remember the room I was in as I frantically researched OCD on the computer while he stood next to me repeating, “Mom, my finger accidentally just touched my other finger.” I’d look over at him and repeat, “That’s OK!!” I must have said that about 200 times during my internet search that afternoon.
Most of what I was reading was telling me that OCD is usually diagnosed at around age 11. He was only four! Somehow, in the fine print at the bottom of one of the websites was a mention that sometimes sudden OCD symptoms may appear in kids as young as 4-6, in a disorder called PANDAS. I had no idea what it was, but that became the new focus of my search. I found a website that described the symptoms (which are usually sudden onset, but not always). It was as if they were describing Connor exactly! I knew this had to be what was going on with him. But then I read that it’s associated with strep. That confused me, because he couldn’t have strep. He had no fever, not even a sore throat… But he had to have PANDAS. I KNEW he did.
So I brought him immediately to his pediatrician. When they asked what was going on, I rattled off all the new symptoms- anxiety, OCD, fear of contamination, trouble sleeping, irrational fear of death… I told them I was 99% sure he had PANDAS. They looked at me like I had two heads. They’d never heard of it! So I told them I was pretty sure he had strep. They rolled their eyes and again looked at me like I was crazy, but humored me and did a rapid strep test. My heart almost burst with joy when they came back in the room and told me the test was positive, he did indeed have strep. That confirmed my suspicion, and I couldn’t get him started on the antibiotics fast enough! Within 3 days of starting his prescription he was back to his normal, happy, playful, curious self! I was so relieved, we had our lives back!
Unfortunately over the years it wasn’t always that easy to bring him back from a flare. Sometimes when the symptoms would come back, we knew he’d been exposed to strep, but his throat culture would come back negative. Since we hadn’t found a local doctor that understood (or even believed in PANDAS) they wouldn’t prescribe the antibiotics without the positive throat culture. Some flares just got worse and worse for months while we searched frantically for help. His symptoms would include most of the original ones, and sometimes new ones would pop up, like rage, ODD, mood swings, regression in math skills and handwriting.
Life was hard! School was almost impossible! And in the case of PANDAS, SSRIs and psych drugs don’t help. The cause of the symptoms is literal swelling of the basal ganglia in the brain, from the immune system literally attacking it after exposure to strep. We learned that ibuprofen could give temporary relief of symptoms, because it’s an anti inflammatory. And eventually we were able to get him to a specialist in NJ who ran a slew of blood work and officially diagnosed him. That was how we learned that sometimes you may not find the strep in a throat culture, but in the blood work you can see extremely elevated strep titers, showing that his antibodies are definitely very active from an exposure to it.
Connor is now 14 years old, and in 8th grade. He’s excelling in competitive soccer and basketball, even though we had to pull him from those sports a few years ago because of the OCD and sensory sensitivities. Even though there were times I thought he’d never be able to finish elementary school, he’s now a straight A student taking honors classes. He was the student of the month at his middle school in January. He’s come a long way from being the kid his school psychologist said was the most depressed and troubled kid she’d ever dealt with, who made us feel guilty, and like we were bad parents for not putting him on psych meds for his anxiety. She didn’t understand PANDAS.
My hope is that in sharing our story, more parents will recognize the struggle and find hope, and possibly answers they’re looking for. I’m not saying that all mental illness can or should be treated with antibiotics. Or that psych meds are wrong, because I absolutely believe they are exactly the right answer for so many people, and I’m grateful for that! But for those who are scared for their children, and are left wondering if they’ll ever get their child back, there are other avenues to explore! Do your research and be your child’s advocate. We went through a lot of doctors before we found one who even believed in PANDAS. But our son is healed, and all the stress from the pursuit was worth it!
For More Information
If you have questions, or want to learn more, you can visit the pandas website. It has a more current list of symptoms which includes ticcs. That’s one Connor never experienced, but many do, which means they’re often misdiagnosed as having Tourette’s.
Another thing to note, is that for many kids, it doesn’t end up being strep that is their trigger. In some cases it can be triggered by other things, like Lyme disease, mold, mycoplasma, and other infections. You can read more about that at the website also. In those cases the condition is called PANS (Pediatric Acute-onset Neuropsychiatric Syndrome). The symptoms are the same, because it’s the same swelling in the brain causing them.