Joe age 11, diagnosed with PANDAS or PANS:
PANDAS -Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal infection is an autoimmune condition initially triggered by strep infections, which disrupts a child’s normal neurologic activity. PANS and PANDAS is characterized by an abrupt onset of obsessive-compulsive disorders and/or tics.
Joe has PANDAS- Basically there’s inflammation of certain areas in Joe’s brain. It is an autoimmune condition initially triggered by strep infections, which disrupts a child’s normal neurologic activity. For Joe, he presents with OCD, anxiety, separation anxiety, and food issues. He won’t eat certain foods because of texture or smell or if it’s messy. He can’t eat in the school lunchroom due to the smell and loud sounds. He has fears of being in groups and crowds or anyone paying attention to him. I ignored the diagnosis for about a year. It was my way of hoping it wasn’t true. But there were things that Joe did for years that I always felt were unusual for children to think about or need. Joe was like an old man...everything he had had a place, and he would never throw things away and he knew when anything was touched or moved! His clothes were an issue too. He would only wear the same thing.
There’s a chance this fades as Joe goes through puberty. That’s my hope. That’s what I pray for. I can’t imagine Joe going through life feeling so anxious all the time. I just want him to be able to go to things, be on teams, ask his friends to hang out, stay at the school for a party...all that stuff. Without overthinking or worrying that no one wants him there or that something bad will happen or what will happen if this or that happens...or his stomach twisting and he has to leave. He’s 11. These are just some examples. My faith is strong and I lean into that a lot and it brings Joe a good amount of comfort and some confidence too. We talk about anxiety being a feeling that the devil wants you to be in, but how God wants you to have fun and feel free and happy.
Brian, my ex, is old school. We both still have a hard time not pushing Joe to just “do things”. Brian is trying, but it’s hard for him to understand why his son won’t play ball in the front of the house with him. He doesn't realize that people being around affects Joe and things like that. We aren’t together so it’s also that the kids are with me more, so Brian doesn’t see the day to day stuff.
When Joe has a “Flare Up” it’s heartbreaking and difficult at the same time. It’s usually out of NOWHERE!!! Joe’s whole heart can be filled with excitement and joy about going somewhere and seeing someone and then BOOM!!! He’s hiding tears and losing his breath and starting to physically create a repetitive movement of some sort. At this point I’m either screaming because I didn’t realize it was a flare up right away, or trying my best to talk him through it. Nothing ever works. We miss the function or just don’t go...or I force us to go and it's a disaster. Joe often cries and says he doesn’t want to be this way...
Aelish, Joe’s sister, is very good about it but also it has ruined most of her social life. I ask friends and family to take her a lot so she can feel extra loved and have typical kid experiences. She’s incredibly social and amazing so it’s extremely hard for her. But she is a good sister and will sometimes see his flare up before I do!
My family and friends are amazing. They show up!! They read what I send about PANDAS or they tag me in posts about PANDAS and they listen to me cry...a lot. They talk to Joe during panic attacks over the phone or right after. They encourage Joe to focus on how awesome he is. They will do their best to help Joe and I on a bad day. Say we’re walking into somewhere like the park for a get together and as Joe starts to see the crowd, he’ll freeze up and start walking away while Aelish will start screaming in excitement and running towards her friends. One of my friends will see Joe and see me and my expression, how I’m basically going to cry and my friend will just go straight to Joe and take over! I’ve even showed up to my friends houses with the kids and walked away, leaving them or just Joe and having this time to calm down. Having two kids that are so opposite and being a single mom and coming from the old ways where kids should just listen and obey, I don’t always have it in me naturally to respond lovingly and it takes so much to make my first response a good one.
Joe age 12
Joe has loved being home (due to the pandemic)! His anxiety and OCD would slowly build up as it got closer to him having to leave the house for school or for anything else. It was so exhausting for him and me to try to keep it from happening, then sending him off knowing he’s doing his best to fight off a panic attack is just too much.
This pandemic has made being home so easy to be honest. He started leaving 1x a week to meet up with kids from TGC ~He spends the hour before double checking that it’s still happening and asking if I’m sure he was invited. He gets dressed and then waits till the exact minute that will give him enough time to get there, on time.
When I thought more about how Joe’s been and how maybe the PANDAS is fading, I realized it’s the compulsiveness of his OCD that’s taken the front seat. His fear of catching COVID or touching stuff, breathing, it going in his eyes...all of it has been next level. He eats less and worries about everything way more during this time.