Good evening, Ladies and Germs,
I am here to tell you that some mighty transformations are coming our way.
A few weeks ago, I barely had time to consider our next steps as our little guy was raging from the moment I'd get home from teaching. My 40 minute lunch period was consumed with calling his doctors and school. My evenings were tied up with me striving to attend to my little daughter while struggling to calm an upset boy who needed holding in order to contain the constant rage. Scream city. Had some unsuspecting neighbor wandered too close to our house, they may have been tempted to call outside authorities, based on the volume of piercing screams emanating from every single room.
We could NOT go on like this anymore. What's the definition of craziness? Doing the same thing over and over again even when you get disastrous results? Something was either going to break or change.
Our 11 year old middle-schooler was NO LONGER going to school. We have been in our own fiscal crises, brought on because the parent who runs his own business from the house has been caring for the child who is home with Lyme and PANDAS. And the middle-schooler's rages were getting worse and worse, especially on the days that he'd been to school. At least he was storing up the rage for home, so school had no idea what was going on. But it was only a matter of time before he lost it in school as well. This wasn't a Lyme herx anymore. This was PANDAS at its worst.
Many kids with PANDAS and Lyme are homebound or homeschooled. We fought that because (A) both my husband and I have to work and we have no family around who can care for our boy; (B) my son is a social, athletic creature and loves to be with his friends; (C) his school is pretty good--what a shame to take him out; (D) what's he going to do at home all day after the tutor leaves?; and (E) it's pretty darned complicated to keep a kid home when he sometimes has suidical thoughts and can't stay by himself.
But he's failing. Faiing to get himself into school, failing to complete any work, failing to break through that cursed brain fog that's caused by too many happy spirochetes having a drunk fest in his brain. Spring vacay for spirochetes--yahoo!
Sunny days for spirochestes are NOT. Going. To. Continue.
I had been in touch with Dr. Jones and Dr. Bouboulis. The day after the snowstorm, I went to see Sandy Berenbaum, a Lyme Literate social worker who has written extensively on children, teens and Lyme Disease. I had consulted with her twice this summer and found her extremely knowledgeable. Not even ten minutes into the hour, she said, "Homebound tutoring."
Relief. I had the validation, the confirmation I needed. Sandy gave me many reasons to help me rationalize this--not that I needed them for myself, but to help me organize our ideas and arguments. The most important one is the autoimmune disease. My son keeps going back to school and getting exposed. Who knows how many kids are walking around with strep, flu, viruses, or are strep carriers--etc. Sandy also suggested that the tutor come to our house and to not make plans to meet in the public library (germs!)
Our next step was to find babysitters. I emailed a few people and within a couple of weeks, we actually found someone. A good someone! And two of our neighbors said we can call on them if we need someone in a hurry. It was easier than I'd thought.
During this time, I spoke with the principal at my son's school who was questioning his absences and wanted to be sure that we were all "on the same page." I told her that the page keeps turning and that we think it's in his best interests to be tutored at home where he won't constantly be exposed to new germs that keep him from attending school the rest of the week. I held my breath but she seemed supportive. I sent in a letter to the Committee of Special Education as well, just in case.
Then, we brought out little guy back for his fourth IVIG. The results of all this: mood is better, a little less OCD and tic-ing, and a better appetite (after losing 14 pounds this year--how to strike fear into the hearts of parents.) All small steps, but one hour of happiness at home is one hour of relief for all of us.
We are now waiting to hear from the school about the tutor. We hope that the teacher assigned to work with our son will be creative. It won't be easy to meet the needs of our little guy who is struggling with processing, attention and memory.
This is a kid who studied his Egyptology book to the point where he could locate Osiris and all the other ancient Egyptian gods at the Metropolitan Museum of Art yesterday (me: proud Mama.) Of course, he had to stop walking around because of joint pain. And then we had to leave because the air pressure in the museum was bothering him. But we made it through a lot of the Egyptian exhibit (while I worried about being in contact with other people and GERMS.)
Throughout all this, it ocurred to me that the place we were in was like one giant birth canal. I don't know if we are the metaphoric babies passing through this canal or the metaphoric mother pushing the twenty-pound turkey...but a voice in me told myself that things will be better once we get through this hurdle.
How can it NOT be a tiny bit better? We're eliminating stress (PANDAS trigger) and creating a bubble to keep him safe from all the germs swimming around his middle school.
We're finally in that place wherein we recognize that our son's diseases are not going to hop out of their lounge chairs, rev up their bikes and scooter away. No, sir. They're far too comfortable hanging out in the tropical beaches of his brain and joints.
Not for long, suckers! We've got double antibiotics going now--Augmentin for the strep and Minocycline for the Lyme. We are back to the originally prescribed levels and yes, the little guy is herxing but it's not so neurological this time. We are Lyme-fighters. Spirochete busters. The Men in Black ridding our world of unwelcome aliens. Who you gonna call?
The entire village. Plus Dr. Jones, Dr. Bouboulis, Dr. Trifiletti, Dr. Bransfield, Dr. Leventhal, Dr. Corsaro, and soon, Dr. O'Hara. Phew. That's a lot of paychecks we're supporting!
Funny how trying to create a bubble around our little guy takes so many people. Kind of like, back in grade school, when we'd raise the colorful parachute up into the air and then all jump under. We're not alone.
So, this is the gameplan now. Tutor, babysitter, neighbors who can pitch in, playdates with neighboring kids that can be conducted outside. And occasional hazardous visits to NYC or beyond. And when the babysitter and tutor aren't there, "Daddy University"--an assignment given by Dear Old Dad. Research Sweden. Watch the History Channel movie that Mommy brought home from the library. Read Wonder.
Now, is there anyone in the house that can help me rid myself of this darned cold before it affects the little boy with the autoimmune disorder who creeps into bed with me every morning?