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PANDAS' last stand

August 1, 2017

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, "Ther