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"Hey, I'm not dead. But gee, my life sucks" (lamentation from the other side of the rainbow)

October 28, 2017




Day 33 post-IVIG #2


The difference between a kid who just doesn't want to go to school and a kid with PANDAS is the number of tears the kid with PANDAS sheds when he finds out he won't be going anymore. It is not my son that doesn't want to go, It is the Bear within him. The lies He tells, The hold He has. His arms are just too strong right now. We're fighting. I swear to God we're fighting. But he's not letting go.


How I hate those matted arms. The worn pads of His paws, covered in the blood of the children He's taken before ours. That grip He holds. How can it be I'm not strong enough to break my baby free by sheer force of will? I'm not. It is. What. it is.


No time for self defeat. New strategy. Regroup the troops.


Max begged me not to go to school last Friday. Well, actually, Max has been begging me not to go to school almost every day for the past month and a half. We were getting by with an agreement he could take one day off per week but had to attend the other four. He was doing well in school while he was there. He even got elected to student council and nominated for honor's band. His grades were up and his teachers reported all was hunky dory.


But.... PANDAS


He was coming home and falling apart. And as the weeks went by, it got to the point he couldn't do homework once he got home without major meltdowns. Or at all. And then the anxiety began


they're going to yell at me for not finishing my homework. They're going to be so mad.


No Max, I talked to them, they're not mad. You're sick. You're not getting in trouble.


No, they're going to yell at me.


Max, have they ever yelled at you? Ever?


Well, no.


So they definitely wont yell at you this time. It's all worked out


No, but they're going to yell at me ....



How can he believe me that he is safe with the Bear whispering in his ear? I'm just a small voice far away, carried by the wind as the Bear's lies blast in from the proximity of his amygdala.


He has been home a week now. Sleeping. Having no demands placed on him so as to avoid meltdowns. Getting his vitamin infusions. Taking his supplements, Challenging his thoughts. Sort of.


He has olfactory hallucinations now. He thinks he smells stink bugs. Everywhere. The stink bugs are out to get him.


I did bloodwork to try to see why he turned south a couple weeks after school started and did not improve with the second IVIG. I found he has gotten himself EBV since last I checked in April. Mono. Lovely. I swore for a solid five minutes when the results came in. I'm not exagerating. Mono has never been cursed out with such ferocity in its entire existence. 


The mono convinced his skeptical father it was time for cyberschool. His adament objections we not make our child live in a bubble fell. Defeated.</