Let It Go seems to be the theme song for 2014 thus far, and I am really trying to embrace it, to let go of my hangup with the way things “should” be and accept things the way they are.
But that can be hard sometimes.
It started on New Year’s Eve when Fletcher began making a strange huffing sound, almost like he couldn’t breathe. When we asked him he said it was nothing, but it continued and got worse. By midnight he was making the sound every few seconds and it was clear that this was not a breathing issue but a tic, an involuntary sound and movement he could not control or stop. A second tic emerged, one where he blows on his hands every few minutes. It was strange, and disconcerting, but this was not our first time at the tic rodeo – Fletcher had a similar bout of tics, one vocal and one motor, almost exactly one year prior when he was in 3rd grade. We learned then that tics are not all that uncommon in children and that most go away on their own. So we ignored it, and after 3 or 4 months the tics just disappeared. We had hoped that would be the case this time as well.
But over the first few weeks of 2014, Fletcher’s behavior changed abruptly. He suffered from frequent headaches, became emotionally volatile, and started to develop irrational fears. He refused to be alone. He told us his head was filled with “bad thoughts” and he couldn’t stop them. He couldn’t sleep at night unless he was in bed with me, pressed against my side where I could feel his body jerking and fighting against the tics. It was heartbreaking and terrifying and confusing.
Sixteen days into this mess I called the pediatrician and the nurse’s immediate response was “This sounds like a strep infection.” Huh? Yes, Fletcher had a bad cold in December, and yes during the same time several of his close friends were diagnosed with strep. But Fletcher never ran a fever, never complained of a badly sore throat . . . Let’s don’t even talk about the fact that I had NO idea that strep could do anything more than cause a sore throat. Now I know better. It is a nasty bacteria. Sure enough when we went in for blood work we discovered that his anti-DNase B strep antibodies were dramatically elevated.
Fletcher was diagnosed with Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep, P.A.N.D.A.S. for short, and started on a long-term course of antibiotics. It is likely that the tics we witnessed in 3rd grade were the first flare of the disease – it seems as though symptoms intensify with each successive flare. It is a controversial diagnosis. Many in the medical community are unaware of P.A.N.D.A.S. or dispute it’s existence, believing instead that the proper diagnosis is Tourette’s or OCD. But as soon as I read about P.A.N.D.A.S. I knew this was what we were dealing with. Everything fit. It may not have been diagnosed strep, but Fletcher was sick in the weeks leading up to both of his flares. And we do know that Fletcher does not present with typical strep symptoms – the only time he has ever been diagnosed with strep before this was when he was in Kindergarten and he spent 3 weeks visiting the school nurse every afternoon with a tummy ache. She would take his temperature, let him sit and talk for a while, and then send him back to class. We assumed he just really liked spending time with her because he never complained of feeling sick when he was at home, but after 3 weeks of this we took him to the doctor. Sure enough, he had strep throat. I had no idea it was even possible to have strep without a sore throat, but apparently it is. So it is not out of the question to think that he also had other undiagnosed infections.
The biggest thing indicating that P.A.N.D.A.S is the correct diagnoses is that within a week of starting antibiotics, Fletcher said the “bad thoughts” were gone. That is HUGE. But it is just the tip of what I imagine is a very large iceberg.
We are nine weeks into this now. Fletcher is taking a daily antibiotic and a host of other medications and supplements to help maintain his gut and to help with the ongoing insomnia. He has good days and bad days. Mostly, to the outside world, he is the same old crazy kid. Except that he isn’t. For the most part he is dealing with it very well – I am so proud of how strong he has been through all of this. But when kids pick on him for his tics, when he has irrational reactions that he doesn’t understand and can’t control, it’s hard. It is definitely taking a toll on all of us.
I haven’t dealt with all of this very well. I’ve spent a lot of time, too much time, thinking back to how wonderful our life was in December . . . and even more time worrying about what will happen if we don’t get this under control, if he flares again. It’s time to let go of that – it’s not healthy or productive.
We are also letting go of a few other things that might not be healthy for Fletcher – like gluten, dairy and soy. It seems there is a lot of evidence out there connecting dietary intolerances to brain health. It won’t be easy, but if it works it will be worth it.
So this is where we are now. The pediatrician says it could be a long hike – possibly up to six months on antibiotics. Honestly, I’m not even sure what happens after that. I can’t think that far ahead right now. Right now, it is time for me to put on my momma pants and stop mourning for the simplicity of life 10 weeks ago, for the cake and ice cream we won’t be eating for my birthday next week, for my sweet boy who is proving himself to be one tough kid. This is the new normal and we will figure it out one way or another.