How Far We've Come

It's a heavily-white day with snow snuggling the tree branches. My home is warm and my dog is moaning. Not one frisky squirrel to bark at today. 

My daughter complains about having to do her homework by 3:00: "Stop torturing me! I'm just a little girl." She tries to get out of it by napping. My son is way too silly. Is he bored or is it a lingering virus in the air? Or both? In fact, the two of them just brought me my iPhone and told me to say hello to Siri. When I did so, Siri answered, "Hello, Lisa Chickenhead." Those kids.

How far we've come in four years. Wow.

Four years ago, my son had a sudden onset of tics and intrusive thoughts that should have keyed any medical practitioner in to the fact that he had PANDAS. But the doctors were clueless, my husband was sick and we thought it was some kind of reaction to the stress in the house. My son never showed any strep symptoms although my daughter had been treated for it. In fact, I think perhaps my husband had it that year as well, or maybe it was the year after that she and he kept passing it back and forth without my son ever showing any medical symptoms himself.

The problem is that it took nearly two years to figure out that my son did not have Tourette's or Bipolar disorder or anything that could be helped with SSRIs. He did not suddenly have ADHD and OCD and depression. He did not have a manipulative personality or a low IQ--all possible diagnoses as told to us by different doctors.

It took two years for us to get a diagnosis of PANDAS. And another 7 months for the diagnosis of Lyme.

In those two years, we tried cognitive behavior therapy, regular therapy, all kinds of medications, behavior plans, consequences for bad behaviors and so much more. In those two years, my husband and I questioned our marriage and our small daughter suffered from anxiety. In those two years, my son did not get much schooling. In fact, he could barely read.

At one point, we took him to a neuropsychologist who thought he was depressed because he couldn't meet our expectations because of a lack of intelligence. He was heavily on medication which seemed, to me, to be interfering with the way his brain was functioning. He was walking in his sleep. To my medically-under-educated mind, it seemed neurological. Why didn't the neurologist see that?

Now, my nearly 13-year old son is reading Schindler's List. He's already plowed his way through the Hunger Games and the Divergent series. Low IQ, my foot. He's even writing a novel, he claims. From what I've seen of other kids with PANDAS, it would seem that this disease preys upon children with high IQs. And divergent thinkers as well. Kids who have a high sense of right and wrong, who care about others and care about the world. Out-of-the-box thinkers. 

So, what are we doing for these kids? Getting them the help they need? Antibiotics, IVIGs, whatever else is required? No.

IVIGs are hard to come by. Insurance companies don't want to pay for expensive treatments for "rare diseases" that haven't been researched nearly enough. Even if the facts show that these treatments help.

The CDC doesn't even yet recognize chronic Lyme Disease. What am I thinking? Of course we're not yet helping our children!

If PANDAS is mismanaged in our health system, our children will be given the wrong medication and will end up with long-term mental health issues. If PANDAS is caught early, these kids have abilities and talents that can make our world a better place. If PANDAS/PANS can be managed, our children will have lives and will not be dependent. My son can be a writer, a doctor or scientist, a teacher, a therapist, a role model.

If PANDAS is mismanaged, our country will spend a lot of money for a lot of people. This goes for Lyme Disease as well. Children with Lyme Disease are treated for autism, for bipolar disorder, for anorexia. As a nation that is studying the brain, we need to learn to first look into the medical for any problems that are perceived to be a result of mental health. 

Had my son been born when I was a child, he would have ended up in a mental hospital. PANDAS is that new. Lyme Disease is that new, at least to researchers. Had my son been given different parents who didn't question doctors, my son would have ended up in a mental hospital. Had my son not met the right doctors two years ago, he would have ended up in a mental hospital. 

How fortunate we are despite our misfortune. 

"OMG! That thing on his door looks so sick!" exclaims my daughter about the blanket I hung up over her brother's door to cover the hole he put into it a couple of years back.

"What?" I demand. "That's not nice."

"Sick means good," she explains. "It's slang."

Oh. Sick is good, huh?

Yep, just another "boring" snow day. Boring is...soooooo good.