"I want to die. I should just be dead."
Just the words to freeze a parent's heart. Just the words many parents of kids who have PANS/PANDAS hear at some point. Again and again.
"PANDAS is over-diagnosed." So speak pediatricians, even in 2015. Hopefully, that will change. The PANDAS conference at Brown University this weekend may help to educate today's doctors. If they go to it. Even so, PANDAS is being rolled out in very strict scientific terms. You must have seen a sudden onset, state guidelines. Other researchers, like Dr. Rosario Trifiletti, will tell you that PANDAS can look very differently, depending upon the age of the child, which, as parents in the trenches, we know to be true.
My daughter had a sore throat this week. My husband took her to our nearby pediatrician who refused--absolutely refused--to test her for strep because the antibiotics that she's on for Lyme Disease should protect her. My daughter is not my PANDAS kid, so perhaps, in this case the pediatrician was correct. But then, again, I've heard of kids with PANDAS getting strep despite being on prophylactic antibiotics! And now my son has caught the "virus" that my daughter picked up.
Whom do I trust, other than our PANDAS and Lyme doctors, who are swamped with patients? Parents have nowhere to go in an emergency. I'm writing about demon eyes, destruction and death wishes.
There was a time when I thought death would have been kinder than these diseases. When I wondered if cancer would have been easier to handle. When I wondered if my child would make it to adulthood. There are days when I don't fear death anymore for myself--except for the fact that it will take me away from my children who love me and need me. Heck, whatever comes after this life can't be all that bad!
Before we knew our son had PANDAS, when he was in the last few days of being 8 years old, he grabbed a knife, feeling the need to hurt himself. We subsequently hid all the knives and scissors in the house.
Now, he's diagnosed, he's being treated, he has come a long way. From being homebound tutored for 18 months, he returned to full time middle school and earned high grades. But all it takes is a whopping virus. All it takes is a bad Herxheimer's reaction. All it takes is some unknown bacteria and brain inflammation. And we're right back where we started from, but with an older, larger child.
He's sick and scared that he'll be self-destructive. Last night, he fell asleep in our bed, in the middle. Two is company and three is a crowd; he's getting taller (still skinny), which means it's not much of a sleep-filled night for us when he's there, but at least he's guarded.
The OCD messages are strong. I've tried urging him to tell the PANDAS to get OUT of his head. But he thinks it's himself. What works? Not a whole lot right now.
All I can do is count the days of the flare, give supplements, an epsom salt bath if I can get him into one, and hope. A couple of years ago, this was our life daily, for months--even a couple of years straight. In the last year, he's shown so much recovery.
But when his brain is attacked like this, when he "acts out", and then slaps himself repeatedly in retribution and remorse, I can't help but feel like crying. I can't cry--my son needs me to calm him. My daughter needs me to act like I can handle it all. It's when I get in the car and drive perhaps to the pharmacy, that I stop in the parking lot and let the tears roll for three minutes before I pull it together and get what I came for. My husband says we have to expect this (do we? Why can't he just totally recover?!) My daughter stares at me with tears running down her cheeks, then says, upon being questioned the next day, "I'm used to it. I'm OK. No one else really understands what a bad life we had." But when her brother leers at her--no, this is not his sweet, everyday, "normal" personality--and tries to hurt her feelings, she finally yells back.
"I'm a bad person," he says then, to me. "I don't deserve to live."
The scenario I'm describing is not an isolated event or person. In a recent discussion between Dr. Dennis Cameron (LLMD) and Dr. Madeleine Cunningham (Moleculera Labs,) Dr. Cunningham stated that someday, we will have scientific evidence that much of what we have believed is psychiatric is actually inflammatory conditions resulting in symptoms.
My husband and I spoke tonight about contingency plans--IF our child is beyond us, if he is self-destructive and we can no longer control him, if we need health care, we should plan ahead so that we take our child to a safe place. We want him receiving medical care, not psychiatric drugs. We want his blood levels tested, perhaps IVIG if needed. We want to remain with him while he is distraught because his brain is on fire. We don't want him abused by "professionals" or taken away from us by the State; that is a great and realistic fear. Think: Elizabeth Wray, Justina Pelletier.
I hope the Brown University conference makes great inroads. But even if hospitals begin recognizing PANDAS/PANS and treating it, most still will not acknowledge chronic Lyme Disease, Bartonella and Babesia, all of which can cause rage, paranoia, depression, bipolar-type symptoms and more.
He's missing school. He cannot think. We are about to find out how strong our IEP is. So far, he's had a very good year--he's a smart kid, a hard worker. He likes his teachers. His school has been supportive. Now we'll see how far that support goes.
I wish he would be healed and could put all his fierce determination into his goals, and not be waylaid by a ridiculous disease that distorts the way he thinks. But that's far in the future, a future I cannot even begin to imagine right now. We just have to get through tonight.