Over the winter Harrison came down with all kinds of normal "bugs" that school aged kids bring home. Common colds, strep throat, etc. He's usually such a trooper about being sick he even had a bout of "walking pneumonia" that took a while to figure out because he's usually so bouncey. Very little slows him down.
So when he began complaining more and more about not feeling well and his bubbly personality and other traits started to shift drastically to sullen and anxious in the last months, we really started to worry about what was going on. We were seeing compulsive behaviors emerge, vocal tics, seperation anxiety, depression. He was suddenly unable or unwilling to complete school work, regressing in behaviors, not wanting to go out or participate in activities. Symptoms significantly above what we were used to seeing even with Harrison having ASD and ADHD... then all of the above shifted abruptly to aggression, bouts of rage followed by inconsolable sadness when he would realize what he had done... he began "acting out" at school and home and couldn't seem to explain why he was doing it other than "his brain was making him".
It felt like he was becoming an entirely different child overnight.
Fortunately for us, Jill remembered a friend whose son went through a similar situation several years ago, and decided to do some digging. After reaching out to get more background, getting some referrals, several doctors visits, documenting symptoms and reviewing history, and extensive bloodwork. We're very fortunate that we have an answer faster than most in this position do. Harrison's bloodwork came back mostly normal with a few exceptions, and those indicated that he has high levels of streptolysin O antibodies along with some inflammation markers.
Harrison has been diagnosed with PANDAS Syndrome.
PANDAS stands for Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections.
The link above has info on the science behind PANDAS, but the long and short of it is that Harrison's body is "attacking" the part of his brain responsible motor control, motor learning, decision-making, behaviors, and emotions, causing them to signal abnormally, and creating neurological issues.
We're starting treatment with antibiotics immediately. My understanding is that there will be several rounds of antibiotics, anti-inflammatories, bloodwork, etc. Additionally, we're working with a specialist who does behavioral therapy for children with PANDAS as well.
Some of these providers and treatments are in network and some of them are unfortunately not in network for us. The treatment plan for Harrison will be several months long at least. Behavioral therapy will be even longer.
We are asking for help with medical bills, to meet deductibles, medications, etc. so we can focus on making sure Harrison has everything he needs to get back to his normal bubbly self. We appreciate any little bit you feel you can spare, or even just a share to your page.
We caught this relatively early on, as some PANDAS cases go many months to years undiagnosed. Harrison should do well with medication and therapy. We will need to continue to be vigilant in the future with stressors and infections that could re-trigger symptoms, but we're hopeful that we can get him feeling more like himself soon. Jill will of course post updates as his recovery progresses.