PANDAS/PANS Law is something I just made up. You have possibly experienced it before though. It’s kinda similar to Murphy’s Law, which states “anything that can go wrong, will go wrong”, but it’s different.
PANDAS/PANS Law: no matter what precautions you take in order to protect your PANDAS/PANS child, you will be blindsided and foiled and outsmarted and fooled by strep or mycoplasma pneumonia or a cold or some other kind of pathogen.
And that’s PANDAS/PANS Law. We could just shorten it to “sick people are everywhere and you are completely screwed” but that’s not really that much shorter. The reality is that we do try to have control over uncontrollable things. Sigh.
“We have put a man on the moon with less computer power than the smart phone in my pocket…yet we can’t convince doctors that PANDAS is real or find a cure for the condition.”
This thought occurred to me while watching the IMAX movie “Journey To Space” while chaperoning my son’s 6th grade class at Space Camp in Huntsville, AL. The amazing feats of mankind (AND womankind!) boggle the mind. We are talking about going to Mars by 2030ish, and yet doctors act like running strep titer blood tests to look for a possible infection or prescribing three weeks of antibiotics to see if they make a difference are Hurculean tasks. And don’t even get me started on the imprecise results of all the medical tests we rely on to help diagnose infections and develop treatment plans for our PANDAS/PANS babies.
Okay..what does space travel have to do with PANDAS/PANS Law as I described it? Well, nothing exactly. I just really did have that thought about how bass ackwards it is that we can have folks orbiting the earth right now on an International Space Station, and yet somewhere there is a kid that NEEDS medical care for PANDAS/PANS and can’t get it because his doctor doesn’t believe the condition exists. Dang it.
But here’s where PANDAS/PANS Law comes into play. The Monday before the Wednesday before we were to leave on the Space Camp trip, I got an email that there was a child with strep in my son’s class. YIKES! I called the school. Yes the child was was going on the trip because they would be on antibiotics and the doctor thought he would be okay by then. It was going to be a super fun trip, and I’m glad the child was able to go. BUT I asked if possible could I not have that child in my car for the 6-7 hours we’d be driving from Lexington, KY to Huntsville, AL. Yes. They would make that happen. I called my husband to tell him about the strep. He asked, “Is it a boy? Will they be bunking in the same room?” OMG! I hadn’t thought to ask that question. So, I called the school back, and they had caught that if I was hoping not to have them in the same car, that I probably was hoping not the same room too. They were on it! (I really am lucky that they understand the illness exposure part of PANDAS. Woohoo!)
So, we go to Space Camp for three days. We were busy pretty much every single minute from the time we got there until lights out that first day. We rode a ride called the Mult Axis Trainer that spins you around in all directions. There was a G-Force Accelerator ride (I laughed the entire time watching the kids). There was a Space Shot ride to show what blasting off in a rocket would feel like. We made rockets. There were tons of lessons on space history and the future of space travel and rockets and monkeynauts and astronauts. We were all tired by the time it was lights out back in our Habitat.
On the second day, one of the boys woke up sick. Uh oh. He was fatigued, fevered, and nauseated…then he threw up at breakfast time. He was REALLY SICK! And this was not the child with strep. It was another kid! AND…are you sitting down?…it was the kid that had sat beside my son in my van for the 6-7 hours it took us to drive to Space Camp! Ahhhhh!!! So, I did what I could to minimize my son’s exposure to strep, and as it ended up, I put him right beside a child that had been incubating an illness while riding to Space Camp.
SEE HOW PANDAS/PANS LAW WORKS NOW??? OMG!!!
But wait…there’s more!
So, that sick boy was in Sick Bay on Thursday, and the teacher stayed with him. I chaperoned the rest of the 6th graders with another dad through our whirlwind, non-stop super fun day. We had a scavenger hunt in the museum. Went through the gift shop. Launched rockets. Watched the IMAX movie Journey To Space (where I thought about how ridiculous it was that we are planning to travel to Mars and can’t agree that PANDAS/PANS exists…gah!). The kids climbed a two-story rock wall. We did a space mission with students pretending to be astronauts, and some of us were ground control (I was PAYCOM). We rode the G-Force ride again. And there were lessons about the international space program and the shuttle program and other simulators. The sick boy’s parents did have to drive down to get him while the other chaperone drove him up part of the way to meet them.
And FYI, that morning when the teacher had called over from Sick Bay to give and get updates, she told me what that boy’s fever was. I had told her that it could be strep with the high fever and nausea/vomiting and everything…could the Sick Bay nurses do a rapid swab. No, they didn’t have strep tests. (Is that enough foreshadowing for you? Are you realizing how this story goes yet? ::cue the suspenseful music::)
So Friday, we got up and got our cars packed up and ate breakfast and graduated from Space Camp. It was all so much fun for the kids…and the adults. We had a terrific time those three days, and much of that was due to our awesome guide Matt. And then we got on the road to go home. Well, the other two cars got on the road to go home…I tried to listen to Garmin and got on the wrong road…and I was supposed to be lead car. LOL! But we caught up to the others, and then stopped for lunch at Cracker Barrel (yum!).
During lunch, I had been out with one of the students getting something out of my car, and I got back to our tables, and the teacher said she needed to tell me something. My son was fine, she said…whew!…I had literally been out of the restaurant for like five minutes. Then the teacher pulled up a text on her phone and held it so I could read it. It was from the school. Can you guess what the text said? Go on…guess. Yes! THE SICK BOY HAD STREP THROAT!!!!!!!!!!!!! OMG! My reaction? I said, “I called it!” And the teacher said, “Yes, you did.” And I sat down across from my son and started texting friends and my husband in a mini-freakout. (My husband had a major freakout via texting.) I was actually calmer than I thought I would be considering I had just put my child right in harm’s way as far as PANDAS goes even as I was trying to protect him as much as I could. It has taken a few days for me to process all of this. I think I’ve had a delayed reaction, or I am now living in freakout mode and nothing phases me anymore. I’m unsure. I may never quite process everything that PANDAS puts me through on a daily basis.
So, there ya have it. PANDAS/PANS Law states that “no matter what precautions you take in order to protect your PANDAS/PANS child, you will be blindsided and foiled and outsmarted and fooled by strep or mycoplasma pneumonia or a cold or some other kind of pathogen.” You can run but you can’t hide from strep or any other bacteria/virus. Whatever you do, all the creepy crawly bugs that make people sick are going to find you, and sometimes they find you right in your very own car. PANDAS/PANS Law IS basically Murphy’s Law. Ugh.
You might be wondering how Jesse is doing. Good question. I really don’t know yet. In addition to the boy that rode down in my van to Space Camp beside my son that ended up sick, the boy that rode down in my van in front of my son to Space Camp got sick too. Of course! And I felt a little rough over part of the weekend after we got back. And my husband hasn’t been feeling well this week either. Jesse’s OCD and anxiety are ramped up a bit. He missed school on Monday because he didn’t sleep Sunday night. Was it excitement over staying up to watch the Super Bowl? Yeah…probably. Is some of what we’re seeing just because it’s his birthday tomorrow? Yeah…probably not. He came home yesterday from school with a fever, but I couldn’t replicate it with the two thermometers I have at home (and like a true PANDAS Mom, I ordered a third thermometer from Amazon today–LOL!). As a precaution, I took him for a strep test at a little clinic (our pediatrician closes early on Wednesday), and the rapid swab was negative. They’ll call with the culture results, but I really don’t think it’s strep because he has been having real strep symptoms when he has it. Right now, all I’m seeing a bit of PANDAS stuff (eek!), which could be just from all the exposure to illness. Sigh. But he has a long 4-day weekend this weekend. AND tomorrow he turns 12. And I’m really going to think positively that this is NOT going to turn into a full-blown exacerbation. NOPE! NOPE! NOPE!
Know what I really wish I could do? I wish I could gather up all the strep and mycoplasma and all that other yucky stuff that causes issues for all our PANDAS/PANS kids and send it up in a rocket off the face of the earth. Straight up to the freakin’ moon! As Space Camp graduates, Jesse and I know how to build and launch rockets now. 🙂
Have you experienced PANDAS/PANS Law? If so, how? This isn’t the first time something like this has happened. But OMIGOSH, it might just be the worst one. We can only do what we can do though. And I will do whatever I can to keep Jesse well and healthy. He was the best thing ever that happened to me 12 years ago. Happy Birthday Eve Jesse James! Happy 12th Birthday! I LOVE YOU!!!
P.S. Here’s Jesse on the Multi Axis Trainer. It pretty much captures life with PANDAS/PANS, eh? “I survived!” is what he says at the end. LOL
P.P. S. There’s still time to send in your Valentine’s Day PANDAS-GRAMS. As long as I have the Love Notes by midnight on Saturday, February 13, 2016, I can get them into the special blog post. Thank you!
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Sarah is a PANDAS Mom to her awesome son, Jesse. She spends much of her time on Facebook, making to-do lists, and listening to music, especially Depeche Mode. She drinks a lot of coffee, likes a good red wine, and has been known to hide chocolate in her pantry. Sarah really thinks PANDAS Sucks (the autoimmune disorder, NOT the bears!). PANDAS Sucks exists to tell the collective story about PANDAS/PANS. Sarah wants to empower other PANDAS Parents and let them know they’re not alone. See also Facebook,Instagram, Twitter, and Pinterest.
Note: Please do not ask for doctor referrals or specific medical advice. This blog/web site is for info and support purposes only. I’m not a doctor.