Bloody Lymey

A Blog About Living with Lyme Disease

Son Shine in the Lyme Light?

My son. My son. My son.

I’ve always thanked God in heaven above that what ever happened to me, happened to ME and not my son. In the end of summer 2008, when I saw the specialist, she thought I had it for 2-3 years. My head sluggishly fired some fireworks with exclamation points about how GREAT it was that the tick bit ME and how many times I took him out in the woods hiking with me.

Throughout my lyme disease, there were things about being my son’s mother that made things more “challenging” for me. He was diagnosed as “Pervasive Developmental Delay Not Otherwise Specified.” In laymen’s terms, this is just over the line on the autistic spectrum.

This is met with some controversy in our family and even with his pediatrician; he started speaking at 7 months old. His first word was “kiss,” and he would hold his little pudgy fist out for me to kiss it (this demonstrated a working knowledge of the word; it wasn’t jibberish).

My son, who I’ll call “C”, can be VERY rigid. His social skills are rather weak – more with children. He gets obsessed with things (past obsessions included shoes and a song by Tina Turner). He is rigid in expecting his schedule and routine to go smoothly and has clearly doesn’t like it when anything gets him deterred from this everyday structure and his expectations.

But he was worse. There were tantrums. Always big for his age, he would fly off the handle and I was afraid he’d hurt himself or others. With my sore knees and my muscle fatigue, I would have to restrain a whirling ball of adrenalized, 45 lb. kid.

You can imagine how bad this sucked. You can imagine how bad it was to try and summon some mental fortitude to try and talk him off his ledge. One day I said I’m NOT having this anymore and I beat some of it out of him (not “beat” as in physically … I mean “beat” as in I unexpectedly changed our plans and MADE him adjust …. I turned on some tough love and let him know under no uncertain terms that the tantrums WILL stop NOW. I stopped playing Tina Turner’s CD except when I felt like it….. there were changes. And it was exhausting. But it worked – more or less).

It’s hard to summon the energy to make him clean up after himself or to stand there and supervise him while he does the dishes. It’s easier to do them myself. It’s easier to let his crayons sit on the floor. It’s easier to dose on the couch and let him poke around and leave his toys out. At night when he’s in bed and I look around, it’s impossible to pick everything up – whether it’s the fatigue or the knees.

But, let’s go back to his PDD-NOS. I found an online support group for lyme. I was clicking on links and reading. There wasn’t anything new, really. One way I deal with things is to read, read, READ about it. And in my readings, I had seen most of what they had to offer. The words changed, the authors were different, the writing styles distinct, but the message was clear: lyme disease is the great imitator, hard to diagnose, no one knows how to treat it, and blah-de–blah.

Then? There were links about children. There were links titled “autism and lyme.” Spectrum disorders are neurological. Lyme disease went for my nervous system. But there’s more …. rigid thinking, a touch of OCD, attention issues (which has come up on my son’s teachers’ radars as well as mine), and more.

I dimly remembered C talking about his knees. In fact, he did it today. I’ve dismissed this over and over and over. I remember when I was younger, the backs of my knees hurt when I walked a lot or roller skated. I thought this was similar. Today he asked his dad if they could leave the park because his legs hurt. When he got home, I asked where they hurt and he pointed to his knees.

He can be impossible to wake up – is this lyme-fatigue or is it how he’s wired?

I’ve decided to get him tested.

Maybe he WAS bitten when we were out and about. Maybe I had this when I was pregnant. I mean, no one knows for sure how long I’ve had it.

I have fears though. I had horrible symptoms and my tests were negative; if it weren’t for my having a smart doctor who saw I responded to the treatment and a third test out of town in a bigger city, I’d probably still be ignorant of my status. What if his test says he’s negative but he’s not? What if it says he’s positive and he spends years struggling as I am? What if it says he’s positive, they treat him and he’s STILL rigid and suffering from this OCD and socially isolated at school?

What if, what if, what if?

What if I never read that article?

Leave a comment »