For the last two and a half years, our lives have been challenging. For the last year, my family has been strained. For the last six months, I have been living in hell.
I have watched my son go from a happy-go-lucky, art and music loving, adventurous young boy to a anxiety-ridden, angry, obsessive, shell of a human being. Everything takes Herculean effort. Things that should be so simple. Leaving the house, choosing something to do, getting dressed, eating dinner. These things all take foresight, planning, and even still, there is no guarantee they will play out positively.
I have been chastised for what was perceived as my lack of discipline (mind you, these people are well-meaning and I don’t fault them for not knowing). I have been told there is nothing wrong with my son. We have been left off of invite lists. We have gotten blank stares or smile and nods. Whispers in the supermarket. We have heard from parents that have thought they understood our plight. At one point or another, I have asked myself if all or any of the above might be true. But deep down, I knew something was wrong. Very wrong. And as I watched the train continue down the tracks, dangerously out of control, I did what any loving mother would do as a last resort. I shielded our eyes and braced for impact. And when the crash happened, it was horrific.
My child, whom I loved more than anything on this planet, woke up angry, went to bed angry, and stayed angry 95% of the day. In fact, a good day was any day he didn’t threaten to kill me, my husband, himself, or the dogs. It was a good day if we left the house for more than 15 minutes. It was a good day if he vegged in front of the t.v. (something that was previously not allowed in our house) and didn’t hit, kick, punch or scream. It was a great day if, behind his empty stare, I caught a momentary glimpse of the loving baby boy I had held in my arms. It was a great day if he gave us a hug. Just that moment would give me hope that maybe, just maybe, he wasn’t gone completely.
But any mother knows that she will fight to the death for her children and a mere four weeks ago, Mama Bear had to get fierce. I knew that those glimpses of my child were real. I knew that if I did not act, they might disappear completely. One thing was for sure, he definitely wasn’t improving and I was certain that someday soon, we would be visited by CPS, and possibly even face the need to institutionalize him.
So, after nearly a year of hoping things would get better, trying all sorts of remedies, wive’s tales, homeopathics for OCD or anger, shamans, woo-woo’s, changing educational strategies, changing schools, advance calendaring, etc. I realized that he had a real, physical problem. His eyes became very dark with pronounced, puffy circles underneath. He began wetting the bed on a nightly basis. Despite his desperate need for sleep, he had extreme difficulty both falling asleep and staying asleep. His separation anxiety grew daily.
Finally, a visit to the pediatrician revealed the possibility of PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders caused by Streptococcal Infections). He recommended a no carbohydrate, no sugar diet and within a week we have watched the light in his eyes begin to return. But we were still in denial. I didn’t do any research until his first flare. He had never had strep throat and I couldn’t believe he was so ill. I didn’t want to believe it. I didn’t want to believe it until a friend whose child has autism suggested PANDAS once again. A quick google search took me to the National Institute of Health page where a battery of symptoms were listed. He had every single one. Every. Single. One.
I poured over pictures of him and could see the change happening. I was mad at myself for not noticing it sooner. I was mad at my husband for dismissing it initially as behavioral. I was mad at the doctors and healers for not diagnosing him properly. I was mad at the world for not being sympathetic. I was mad that the Universe had dealt my precious child such a rotten hand.
But when I get angry, I tend to arm myself with massive amounts of knowledge…and that’s exactly what I have done. I stayed up nights reading, watching videos, talking to other moms, and contacting people who had success treating PANDAS. And though I certainly don’t have all the answers (yet), I have something just as valuable. I have hope.
So, this message is for all my friends and family members who have struggled to understand my sudden flakiness, who have ever watched my son in a flare, for all those unreturned phone calls and emails, and last-minute cancellations. But mostly, it’s for any parent who remains silent because they are paralyzed with a fear that they somehow got it all wrong. It is only through sharing with each other that we can all begin the journey to healing.
Thank you for taking the time to read this. You have already shown your support. I will be updating as I know more.
