My son Max keeps track of his stats. No, not baseball or grade point average. A different kind. The kind brought by the Bear. 44 tubes of blood drawn in the past few months, 15 specialists he saw before he got the right diagnosis, 7 pokes looking for veins to get the treatment he needs.
He got his IVIG last week. The first 4 pokes came looking to put in his IV for treatment. The poor kid inherited his mothers terrible, tricky veins. We were trying for the hand because the IV was going to be left in overnight for the 2 day infusion and the hand would be easier to keep in place. It would also be less cumbersome for all the video games he'd be playing and YouTubing he'd be clicking through as he sat through the 2 long days.
The hand didn't work out, though, so into the left AC it went (that's the vein inside your elbow crease). Oh well. We'd make it work.
He got more upset getting the IV placed than I thought he would. He was tired and emotional. It's just the PANDAS making him so upset, I reminded myself. Tried to convince myself. This is the treatment he needs to get better. It is what it is. It is not easy to watch your baby getting an invasive treatment. No matter what.
He was glad to be given unlimited computer time. Annoyed with the frequent vitals and my constantly pushing him to drink more Gatorade and juice boxes. He's normally begging for sugary drinks instead of water since we limit them. By the end of the infusion he was battling to make himself drink them. Strange times. Strange times.
He made it through without side effects. The IV stayed in overnight (with the help of a couple rolls of cling gauze and medical tape. "Next time, Mom," he later said, "Shave my arm before you put the tape on." I told him if there has to be a next time, we'll know all the tricks). He was so glad when it was done and he could get the IV out (well, glad minus the part where we took off the tape).
I gave him ibuprofen, Zofran and Benadryl before bed in hopes of staving off the side effects that often come after IVIG. It didn't work. A pitiful voice woke me up at 6am.
Red Gatorade vomit all over his floor (rookie mom mistake, buying red Gatorade for a kid who might puke. Next time, we'll know all the tricks). A terrible headache. Max has never had a headache before, He told me "my spinal cord hurts." Smart kid. He was right his meninges surrounding his spinal cord and brain were inflamed. He had petechiae on his face, now bloated and round. And he had a fever of 102.8. Max has never had a fever. Never in his life. PANS involves something PANS expert Dr. Trifiletti calls the alternate fever response. When kids with PANS/PANDAS get sick, the wrong part of their brain gets activated. Instead of telling the body to develop a fever to fight the infection off, it tells it to tic and become anxious and angry. Fevers are preferred. So part of me was encouraged.
Mostly I felt awful for him and I knew, although it was certainly a side effect of the IVIG, I needed to rule out infectious meningitis. I also couldn't get on top of the symptoms with the oral meds we had stocked. So, off to Children's Hospital we went.
I had to call off work from my urgent care job to take him. I have never called off a shift as a doctor in my life. My husband offered to take him and I said no. He needed his mom. And I needed to be with him, to see that he was okay.
This is a lot. This PANDAS. This awful Bear that steals our children away in the night. It is a lot. Even for us. Our family has been through an awful lot, more than most. But this PANDAS, it's a lot.
Pokes 5,6 and 7 came at Children's. He kept asking on the drive over, "There won't be any needles, will there? They can just give me pills, right?" I told him it would be up to the doctor in the ER. Cop out. Telling him in the car would have just made him even more stressed. It was stressing me out to know the needles were coming so it would most definitely stress his already weak little body.
We got to Children's and parked in the garage we've been in so many other times. Seeing so many doctors who did so little for us. Who would still deny he had PANDAS if you asked them today. Who would still leave him as he is. No childhood at all instead of one at least partially recovered.
I told him I would go get him a wheelchair because it hurt his head to walk. He felt silly but he let me. He had on my crooked sunglasses (our baby is a little destructive) because the light hurt his eyes. He kept making jokes about how ridiculous it was that he was in a wheelchair because wheelchairs were for really sick people.
I'm glad he doesn't know he's sick, I thought.
The ER wasn't busy. It was early. I explained his symptoms to the triage nurse and that he'd gotten IVIG the previous two days. What for, she asked. Autoimmune encephalitis, I said. I hushed Max as he started to say PANDAS. There was no need to name the Bear.
I followed the nurse's aid (MA? Tech? LPN? Someone in scrubs anyway. Max called them all "doctor"). I pushed Max behind her to a room behind the big doors in the back of the ER.
An MA who had tattoos on his arms took Max's vitals. Max asked him a hundred questions like he always does. The nurse came in and asked us questions and then handed him a hospital gown. I looked at it and said, "Max, look what it has on it." He looked. "Oh no, " he said, laughing.
It was covered in cartoon panda bears. I swear.
Every person we talked to during our stay asked Max his pain on a scale of 0 to 10. He always said 4.
I looked at him, It was not a 4. He was miserable. Mildly cognitively impaired from the pain. Not himself. The stress was making his tics worse. One of them was a head jerk which made the headache even worse. I thought of all the adult patients I've seen in my career who've reported their pain as a 10 as they sat calmly, playing on their phones as they nursed a sprained ankle from 4 days ago or a sinus infection. My little boy was so much braver.
We were wheeled to another room by the nice tattooed MA right as the medical student who'd come in was showing us the pain chart, pointing to the increasingly unhappy faces that went with the pain scale from 0 to 10. Max didn't have his glasses on so he couldn't see the little faces anyway.
The nurse and the nice tattooed MA delivered us to a different room (for reasons they didn't offer and I didn't ask). Max kept asking if there would be needles. I told the nice tattooed MA that Max does not like needles. He said he used needles everyday to give himself medicine and lifted his shirt to show Max his insulin pump. Max felt better about his 4 pokes then.
Shift change came. A new nurse. Then the doctor, a resident. We told him our story. This time we mentioned the Bear. He remained neutral which I appreciated. Doctors can be dismissive or hostile with PANDAS patients. He laid out the treatment plan and asked if I was ok with it. I was.
They would place an IV, take some basic labs and give him fluids, toradol (an anti-inflammatory pain medicine), Compazine ( a nausea medicine we give patients with migraines) and Benadryl (also given to our migraine patients). I told Max it was called the migraine cocktail. He found this funny and quite odd.
It took them three tries to get the IV placed. 5, 6, lucky number 7. They had to call in the IV team. The IV nurse told Max it was becase he was dehydrated but he'd had almost 4 liters of fluid the previous day between his drinks and a bag of fluids hung at the end of the IVIG. He'd only thrown up once. Max didn't buy the explanation. But he was a trooper nonetheless.
We watched "Shark Week" on the TV mounted to the wall. Max, still in so much pain, said something softly. "What, " I asked, "Mies would make a terrible shark." I thought maybe he was delirious. "Huh," I asked. "They just said sharks go without eating for a month at a time." I laughed, His brother Mies loved to eat. Funny. Such a fighter, my Max.
I sent a picture of the Max in the darn PANDAS gown to his dad and my husband, his stepdad. I turned the lights down and watched "Shark Week" on mute while the IV Benadryl took effect and Max dozed off to much needed sleep.
A few minutes later the team of doctors arrived (damn doctors always show up at the worst time). This time it was the attending, the resident, a fellow and a medical student. The attending told me his labs were fine and we could go home once the IV meds were done running.
I thanked them and asked them to turn out the lights as they were leaving. I looked at the labs by the light coming in from the hall. The diff on the CBC showed almost no lymphocytes. This contrasted strongly with the labs he'd had a couple days before the IVIG. The IVIG is doing its job, I thought, Go IVIG, go , go, go.
We left the ER by foot. Max was kind of disappointed. He'd gotten used to the wheelchair. As we were driving home, my husband sent a text in reply to the picture I'd sent him. I had Max read it to me.
"Wow, the Panda just won't leave him alone... or maybe it was Panda's last stand."
Max laughed. He like that idea. It's PANDAS' last stand, we said. He would be well.
7 pokes, 44 tubes. We're done. The ax is landed in the Bear's belly. He is bleeding out.