PANDAS or PANS Can Be Hiding in Plain Sight

Cabin fever was definitely taking its toll on us.

Every conversation was somehow escalating into an argument. Every interaction with Isaiah seemed more like a list of what he was doing wrong rather than what he was doing right.

School work was a struggle, bedtime was a struggle, forget picking up his toys.

I watched it happen, that defeat that a child feels when they decide that if they can’t do anything right, they figure that they may as well stop trying.

When changes happen in the parenting balance, I tend to turn to the experts, and so, the brown box from Amazon showed up on my doorstep.  I went for all of the leading books on parenting a right-brained child, and felt very much vindicated in my thinking when I read THE RIGHT SIDE OF NORMAL: Understanding and Honoring the Natural Learning Path for Right-Brained Children. But hadn’t quite found out what to do about it when Isaiah wound up in the hospital.

It started like a normal stomach flu, he woke up early and said “Mom, I have to throw up.” Before I could settle into the routine, he was throwing up again. Five hours of throwing up every 15 minutes, so regularly you could set your clock, and we were in the ER.

He was a shell of himself, his olive skin empty, his lips so white even my common sense couldn’t quell the fear. And as they settled us into our curtained room he began to cry.

My heart broke a million times that minute. My loud, jumping-on-the-furniture, talking-a-mile-a-minute boy was scared and hurting. Did I really call him annoying yesterday? Could I have said those horribly harmful words to this fragile little boy?

This fragile little boy.

My little boy; I had felt so separate from that emotion for the past few weeks. I had begun to see him as a challenge, no an obstacle to peaceful living. A big boy, pushing his big boy needs so far that the little boy inside of him was eclipsed.

And a mom, shrouded in the misery of gray skies, too worn down to look for him.

I don’t care how many times someone agrees that parenting is hard, in the throes, it is easy to feel like the only one. I was buried in my work, and my writing and my homemaking. I was irritated by constant demands to “look at this!” and “sit with me while I do this!” Angered into apathy over his steadfast refusal to do schoolwork. I got to the point where I actually accepted watching TV until all hours of the night if it meant I didn’t have to argue.

Because everything was an argument, if he didn’t get what he wanted he would just push, and push and push until he blew up. And they were getting louder and angrier than before, every day. I was tired.

It wasn’t as if I didn’t recognize what was happening, but I felt I was missing the tools to help him transition from a nine-year-old little boy, into a nine-year-old big boy.  I was afraid of what the breaking point might be.

The blessing was, I didn’t have to find out.

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Is it wrong to say that it was a blessing that my son wound up in the hospital? Forgive me if you think so. You never know what form help will take. The hospital is the form God choose for us.

My boy lay in a hospital bed intermittently crying because he was so sick he thought he might die, and excited to push the “nurse call button.” Then crying that all he wanted to do was go home.

When we got home, the big hurdle was over, but he was still very sick and scared. The furniture jumping, kamikaze boy could barely get out of bed to go to the bathroom for three days. He lost four pounds, but somewhere along the line, he found me.

We spent more time being close together in three days than we had in three weeks. I tried not to show my concern, but stayed right next to the bed, so when he got scared, or woke up crying, I would be right there.

Over those three days the boy would look at me with fear and love in his eyes and say, “Mommy, thank you so much for taking such good care of me.” As if he knew that we had been walking a tightrope of anger and misunderstanding for weeks. And then, in tears, “I know no one but you would take care of me, I know how hard it is mommy, thank you mommy, thank you.”

And with each thank you my heart was breaking. I assured him over and over that I would always be there, that there was nothing he could ever do that would make me stop loving him. That I would always be his mommy.

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We crossed over those few days, we found a better place.

He learned he could trust me implicitly, I learned that the sweet little boy was still inside of him.

You might say that we should have known these things already, but if you have ever been a parent, then you know things are not always of the sunshine. Sometimes you fall into a dark place with your child, and you start wondering…how will I get through this? You worry you may not have the tools you need. You lose sight of the future.

I am thankful that I got a chance to look back, and yes, I believe God stuck his hand in there and called a divine time out.

We really needed it. I had allowed us to live in our own silos for too long, we had forgotten how to coexist in one space, how to laugh and enjoy ourselves, instead we could only push each other out.

I will not lie and say, “Now everything is perfect!” Oh no, far from it, but everything is good and normal. The respect has been restored. We are no longer isolating ourselves in our own rooms, not spending time except during meals. We are listening to each other, and genuinely caring about each other’s needs. The peace, well, let’s just say it was never peaceful even in the best of times, but I wouldn’t have it any other way!

While Isaiah was in the hospital, I revisited many of the conversations I have had with people about PANDAS/PANS (Pediatric Acute-onset Neuropsychiatric Syndrome). Isaiah had many of the symptoms (early onset tic disorder, OCD, separation anxiety, bed-wetting) and this episode was the impetus for me to get him in to see a specialist. The thing is, with PANS, any illness can cause a flare, and days after this story, he began a serious pattern of OCD behavior worse than any he had before. With the PANS diagnosis, we gained even more understanding and a path to treatment that has been very successful so far.

If you are reading this, and you understand, don’t feel alone. I felt ashamed of the feelings I was having, I didn’t want to share them with anyone. And frankly, part of me still doesn’t. But how much more alone would we be if we didn’t share, if you didn’t know that I understand how you are feeling? I do, and it’s ok. Today we looked through baby pictures together, I told him all about little Isaiah, it helped for us to look back together, and to remember. Step away from the disappointment of yesterday and reach out to the little kid you know is still inside your big kid.

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