Just like Holden, parents often hear about PANS/PANDAS through word of mouth or knowing a family with a kiddo already diagnosed. So, keep talking about PANS/PANDAS wherever you go. People are listening.
Also, while Holden did have a positive throat culture, please note that a positive throat culture is not required for a PANS/PANDAS diagnosis. There are many triggers besides strep; even if strep is the trigger, patients do not always have strep throat. Some may have perianal strep; some have strep that has gone intracellular and thus not on the surface of the tonsils. Please read more about Testing & Antibiotic usage for GAS in PANS/PANDAS and PANDAS and PANS triggers.
Holden’s PANDAS Journey
I am currently an Occupational Therapist and through college, I had the opportunity to provide respite services for 2 children on the Autism spectrum. The one little boy, Ty, was only 3 at the time and I was very involved with him and his family. I knew Ty had PANDAS but didn’t truly know what it meant. I just knew if he had a flare, I had to keep his sisters safe and keep him safe from himself. Little did I know, fast forward 13 years later, I would be living this same scenario.
Holden began having “meltdowns”, mostly stemming from anxiety or a fear of being in trouble for something minute. He had just gotten a diagnosis of ADHD, so we attributed it to that and tried psychological interventions focusing on “understanding our emotions”. I knew this wasn’t typical though as I saw that he would actually black out during his fits of rage. He would normally destroy toys and artwork when he was in meltdown mode, then he would have to be completely secluded to calm down, then he would come back downstairs and be completely perplexed as to why or how everything was destroyed. In my heart, I knew this was something completely out of his control and not “just the ADHD”. His body seemed so angry and he seemed angry being IN his body. I had an inkling that it was looking like PANDAS, just like Ty, but when I brought it up to his Psychologist her exact response was “I’ve never treated anyone with that so it can’t be”. My jaw dropped and I knew I needed to buckle up because I distinctly remember Lori, Ty’s mom, having to fight to have doctors see what she saw because this disease is not widely recognized in the medical community.
Holden’s fits of rage continued and reminded me more of Ty because I had to keep his siblings safe and keep him safe from himself. The scariest and most defeating part as a mother, came when he turned on himself and started hurting himself. He would hit himself in the head and repeat that he was such a terrible kid, and then he tried to gouge a hole in his leg because he was so angry at himself for something so little. This is when he made threats to kill himself. I told his PCP and, understandably, her response was to take him to the ER. I refused. I knew that would be the beginning of the end for him and he would just be admitted and overmedicated. He made 2 more threats, and my heart broke even more.
At this same time, we were blessed with an angel in disguise, his first-grade teacher, who also had a daughter with PANDAS. She was so open with me but also so adamant that we see her neurologist. For some reason, I delayed, probably some delusion that it was still the ADHD making him this way. I looked at the PANDAS network of doctors and sure enough, he was 1 of 2 doctors within the whole Houston area that were recognized by the network. This is when I made the jump, I KNEW this is what he had, and now I needed to prove it. I felt like it was me against the medical community, to prove that he’s not just a “6-year-old boy with ADHD”.
At this point his rage was unbelievable, everyone was tip-toeing around him, but then I saw IT. I was seeking so much validation for people to “believe” me, that if I saw just one more symptom out of the list of PANDAS symptoms, they would believe me. Holden and I were talking on the couch and he started to repeatedly blink, really hard, like a tic. There was my other symptom! How sad to be so enthusiastic about tics, I know.
With this I went to his PCP, I told her everything and I know it sounds crazy, and I know he has no other Strep symptoms, but can you please do a test? She is so open and understanding; she absolutely was on board to test him. She came back within a few minutes and said, “Your mamma gut was right”, she said even with no throat signs or fever he was positive for strep.
VALIDATION. I wasn’t crazy! My kid wasn’t crazy (permanently at least) because at that moment he absolutely was. He did a round of antibiotics and I thought it was smooth sailing from there until the Herxheimer effect smacked us in the face. Thankfully though this reaction only lasted about a week and then the storm clouds cleared and there was actually light. My visual of this time in our life is literally storm clouds parting and the sun coming through. We had our son back!
Our neurologist has been amazing with finding out what is in his system and then matching what symptoms he’s having with what levels are ‘out whack’. Holden has been an amazing trooper with bloodwork. The girls at the lab know him and are SO understanding. It was a sad realization, but they celebrated the one time he went and didn’t try to make a mad dash out of the building, it’s the little things!
We now know his numbers for Epstein-Barr are very high and he needs an antiviral constantly. Also, he is very sensitive to fungal levels. I don’t think our roller coaster is over yet, but we just came down that last drop, and it’s starting to smooth out.
If you’ve made it this far, thank you for reading, and spread the word!!! I feel that there are so many people out there who are affected by this but keep getting dealt another diagnosis or are brushed off by medical professionals.