Day #6 post IVIG #2
The Bear has sent in additional troops. Compadres in the war on our children. My son Max's younger sister and older brother have been diagnosed with PANS also. He is brutal and relentless. But we fight on.
Max is doing better post-IVIG this time around. He was infused with IV vitamins after both rounds of IVIG and it prevented the headache and vomiting afterwards and made him less exhausted. The nurse managed to get an IV in him the second day although it turns out his veins are very oddly shaped and it took a few attempts. He was brave.
He has alternated between better and worse since then, hour by hour. He was able to do his homework as he stayed home from school this week. His mind is getting sharper again and his handwriting is holding steady. His tics are still significantly better than before his first IVIG.
He has been extremely defiant, though. Angry. And manic. He's never been manic before. It's painful to watch. He's happy, of course, but I know what comes of mania unchecked. The defiance is hard to take. I know it's not really him. I know it's the Bear making him say these things, these things that hurt him as much as it hurts us.
We are sitting at the table and I say, "I want you to know something, Max."
"What," he asks.
"This isn't really you, " I say, "This is the Bear and--"
His lip begins to tremble. He's crying.
"What is it, " I ask.
"I thought you were going to say "I want you to know something Max. I really like you." And he begins wailing. His heart is broken and so is mine.
The pattern continues day and after day. We ask something simple of him. He refuses and becomes angry and defiant. We supply appropriate boundaries and he runs to his room, hides in his closet, wailing. And says no one cares about him. We don't love him. Nothing he does is right.
I try to reason with him but it is not a reasonable thing. The Bear does not fight on the level of logic. He is pure emotion. Pure Id, No Superego.
I try my best to stick to the plan: validate his emotions, remind him he is loved, allow him to feel it out and then distract him and draw him out of the closet to get on with something else. I try my best. But I am spent.
His brother got a sinus infection this week and began a flare too. And his sister has been flaring since her onset over a month ago. Three hurricanes at once. Wind and rain and chaos. How is it this Bear has such strong weapons, that he commands even the weather?
We are luckier than most. We are able to give them the treatment they need. So many families cannot. So many families don't even know that PANDAS is what their child has. So many know, but can't get the treatment they need.
Max will be getting a PICC line so he won't have to go through all these needle sticks. They will put him to sleep with gas before starting IV sedation which makes him very happy. His older brother Mies is pulling out of his flare now that I've changed his antibiotics and had him home from school resting for two days. His little sister, we know we're blessed to have caught it so early. She has so much more of a shot at recovery than the boys because of that.
Her presenting symptom was bedwetting. How many children presenting this way are not getting properly diagnosed? Too many.
Mies's symptoms were thought to be due to his autism. How many families are being told "it's just autism:" Too many.
We are encouraged at the improvements we have seen with the IV vitamins and will begin treating Max with them on a regular basis now that he is getting his PICC. He has eaten poorly for so long, it could unlock a lot for him. We are blessed to be able to do this and will be helping as many families as we can to be able to do the same if it is right for their PANDA.
His little sister Lena's pupils are huge right now. She looks like a doll. She's not there most of the time. Someone else in our little girl's body pretending at being Lena. One of the three little bears masquerading as Goldy Locks. Telling her not to eat her porridge, to be afraid to sleep in her bed. He snuck into our house, into our daughter, when we weren't looking.
The Bear has upped the ante. Fresh troops. We are not so fresh. But we're taking our vitamins. One bear, three Bears, maybe one day four Bears when their little brother is older. We will stand our ground and grab a few more axes. They will not take our children.