Day 37 post-IVIG
The battle has moved to the Bear's high ground. The place every PANDAS parent fears: school. Iwo Jima, Gettysburg, Waterloo.
A place of separation anxiety, tics in front of classmates, anger and weepiness, and perhaps worst of all, germs. Germs everywhere. A class full of walking talking petrie dishes swimming with strep and coxsackie and mycoplasma and colds and flu.
We braced ourselves for what was about to come.
As of late, Max has been up and down day by day and hour by hour. His tics are consistently almost entirely gone. Leading up to the IVIG and soon after getting it, they'd gotten severe. He was ticing almost constantly and had developed several new ones. It was painful to watch. The other symptoms range from significantly improved to as bad as usual.
The weekend before school started, Max went on a camping trip with my husband and my husband's brother and nephew. Max and his cousin are sympatico and Max was excited for the trip. They go every summer. We were afraid of how it might go. Max is extremely tired on his bad days, terrified of insects, moody. We were asking him to canoe and bike for two days and sleep outside. Not to mention the question of his eating the camp food. It could have been a disaster. It was not.
He had a ton of energy the first day and a great appetitie. He was in a good mood. He paddled like a champ and played in the water. Chatted incessantly with his cousin and played with his baby brother. He even ate a new food for breakfast (!)
Day 2 was not so great. What went up, came down. He was exhausted and spent the day sitting on a chair while the rest of the crew went on a hike and rock climbing. Max used to love climbing. He's been a natural at it since he was 15 months old (amazing what a 15 month old mind can come up with in a kitchen with high cabinets and lots of drawers). But the past two years he has been tired and afraid. He was again.
He got home that night at ten and couldn't sleep. So, we started day one of school sleep deprived. He made it through the day fine but came home and let it all loose. Sadness, anger, exhaustion, anxiety. Wailing and gnashing of teeth, clothing torn.
The next day the battle moved to even ground but one where you know not who is truly your ally and who your foe. The teacher conference.
I went in armed with information on PANDAS and armor on. I'm an autism mom. I never leave my armor at home for an IEP meeting. His teachers were largely receptive but utterly confused by what I was telling them about Max. They saw a very different Max from the one we had at home. And, they don't really look if we're being completely honest. Max is quiet and respectful and off in dreamland drawing every chance he gets. Not a problem student.
They talked about how good he was and how beautifully he'd sing this past summer as cantor. I told them about the meltdown he had at home less than an hour after that mass. They looked like I'd popped their balloon. These sorts of meetings generally wind up with me feeling like a harsh mother as the school focuses on how great my child is doing and my insisting they look at all that's wrong. After 10 years of these things for my autistic son, I'm over that.
They admitted they'd seen a big change in Max the previous January. They asked what they could do and agreed to everything I asked. They were not secret agents of the Bear infiltrating our ranks.
The only holdout was the principal. Keeper of the school. The one who must justify accomodations to the state and all the other parents whose kids are not receiving the same. The last straw for her came at the end when she politely requested documentation from Max's doctor of his diagnosis. I handed them the letter. It was signed Dr. Elizabeth Spaar.
"You're the one who diagnosed him," she asked incredulously.
"Yes," I said, "15 doctors in 8 years failed to diagnose him properly. Good thing I went to medical school."
I stared her down and then turned and met the eye of every teacher in the room.
If my role as his physician is the fact you are focused on in this situation, you are not paying attention.
The conversation with the school guidance counselor the next day was more of the same. Max is fine. He uses his art to deal with his anxiety. What a nice way of phrasing the fact my son is overcome with anxiety and escapes into a world of frantic, obsessive compulsive drawing to avoid social interaction and a public mental breakdown. And who diagnosed him, the conversation inevitably circled around to. The answer met simply with a disapproving "oh."
Would they ever dream of saying such a thing if it had been cancer I'd caught in my son? They would call me a hero and name it a moving story of a mother's love and determination to seek a diagnosis and treatment for her son. Here, I am left to imagine they are questioning if I am a crazy, hysterical mother or some kind of Munchausen's by Proxy type looking for an excuse to infuse IVIG. Because it's just so damned fun.
Overall I called the battle a win for our side. What would the week hold though?
He has held it together at school but returned home Wednesday with a full lunchbox, forgot to do his homework, and was overcome with panic and despair by the time I got home from work. There was no consoling him. No reasoning with him. My assurance I would speak with the teacher about the homework meant nothing. He would still be humiliated, still a failure. I also hadn't been able to find him the bookcovers he needed (tried four stores. They've apparently been sold out for three weeks per the mom at Target. Run on book covers, everyone). He'd had gym that day but was too tired to put in much effort and was now frantic over the fact he would surely fail gym.
He had some mouth ulcers so I knew he had a virus in his system. After he managed to go to sleep (quite unwillingly despite his body's exhaustion) I talked over with my husband whether we should keep him home the next day. I don't want this damn Bear to disrupt his life any more than it has to. But it was too much. He was sick and tired and putting in heroic efforts all day long at school. I kept him home.
He slept in and in the afternoon we went to the apothecary and got him CBD oil for his anxiety. He made weed jokes. The pharmacist showed me the liquid form and started to tell me I could hide it on a piece of bread under some butter. I interrupted her-- He's got food restriction issues. There's no hiding anything in Max's food. We need capsules. She happily obliged us.
We went home and he did his homework and chores. That night, he wanted to sleep in our bedroom because he was convinced there were monsters out to kill him in his sleep. I managed to convince him to sleep on the floor next to his little sister instead. The monsters only get you if you're alone I guess. He is at school today. I asked him to please try to eat his lunch. We will see.
He asked what I would write in the excuse I sent in for his missing yesterday. I told him I would write what my mother had always written on my excuses: Please excuse Max's absence from school yesterday. He was not feeling well.
Max is having some amazing moments. My husband rates him a 9 out of 10 on his good days. The absence of tics is truly a blessing. I know the IVIG is working. We will be giving him his second dose in a few weeks. He is not happy about this. He dreads the IV. I dread watching it. But I hold out faith that with repeated treatments he will manage to be a 9 out of 10 all the time. He will eat and run and repair his body. He will climb again. Be mischievous again. Be a kid again, before it's too late.
Let the Bear think he's won this battle. He has not. And he has certainly not won the war. We will take the high ground in time and name it ours. We fight with patience and persistence and faith. And the greatest of them, love. Max will feel well. He will return. No excuses.