The Bear has made his next move in the ongoing war. He has opened up a new theatre of war. August, our two and a half year old. One by one my children have been stolen away and now he has joined them. He is not yet in the belly of the Bear but he is in its grasp. The question is: can we save him before he ever descends to the belly?
Looking back, parents of children with PANDAS and PANS can usually remember smaller episodes that occurred before they finally fell off the cliff and got diagnosed. Little things that bothered you but you told yourself you were just worrying over nothing, imagining things. That's where Auggie is now and it makes me realize Max had these episodes too. It's de ja vue all over again.
Auggie has always reminded me of Max. I'm sure it's hard for my husband to see what I'm talking about because Max is half Chinese so they don't look alike to him and Max has had PANDAS the whole time he's known him. He didn't know him before. He didn't know the chubby, happy, healthy, vibrant Max I did.
When Auggie was 15 months old we were at Children\'s hospital having him evaluated because he kept choking and gagging on his food. The pediatrician looked at him and said he was probably the healthiest example of a kid there was. And we smiled and agreed. Because he was. An energetic, funny rosy cheeked guy with an infectious smile and all that.
I kept telling Eric, Max was that way too. We might lose Auggie. We can't let ourselves lose Auggie.
Still, we hoped he'd be spared and thought he really might. We'd done some things differently with him. He was breastfed. We really stressed organic vegetables and kefir and fresh whole foods and raw milk.
When he was almost two, Lena was taken to the belly of the Bear and I grew less sure he might be spared. I watched him closely. I started to feel uneasy this past winter and we started him on Lena's vitamin, probiotics and fish oil regimen. Studies have shown siblings of children with autism are less likely to develop autism themselves if they are given vitamin D and probiotics. I reasoned the same is likely true with PANS/PANDAS. Couldn't hurt.
Then last week it happened. Auggie insisted I put on his "choo choo" jammies with the trains on them. Normally he doesn't even want to get changed into his jammies at night but now he was insisting and when I couldn't find them at first, he started to lose it. He slept poorly that night. The next morning he wanted to get dressed right away. Again, not typical for him. And he insisted on a particular outfit and insisted I put the clothes on in a particular order.
We went downstairs to the bathroom and he was terrified of the bathroom ceiling fan. Not Auggie. He wouldn't eat breakfast. Not Auggie. He's such a good eater. (So was Max)
He couldn't handle me leaving for work. He was having meltdowns over tiny things. Not temper tantrums, meltdowns. Not Auggie. He was afraid of trains and the air conditioner. Not Auggie.
Not Auggie. The Bear.
We started him on antibiotics and steroids and now, four days later, he is showing some signs of improvement. He had some sores around his mouth so I know it was a virus. The question is, now what? Can I keep him from falling off the cliff?
He's started having issues with his diaper changes because he doesn't want to be separated from his poop. He asks me to put it back. I know how to handle it because I have had to handle this before. Max did the same thing at this age. I didn't think much of it at the time but now I see it's OCD. I see it's the Bear. I talk to Auggie about it and ask him to help me throw the diaper away and comfort him and we avoid a meltdown. Funny the skills you gain parenting four kids with PANS/PANDAS.
I went to two PANDAS conferences recently and the experts there discussed the issue of kids who are in these early stages, having these mini episodes. One said you should treat them. Another said don't. What was not said, what we don't know, is whether we can keep them from falling off the cliff or not. And how.
There is no way to know how aggressive we should be in treating these kids. Each family and their physician must come to a decision that is best for them. For my husband and I the answer is simple. We are doing anything we can.
I look at Auggie and I see Max. And I see the last nine years. A childhood stolen. Changes to his brain that cannot be entirely undone. A family that has lived in a warzone. And I see who my Max once was.
I am not losing another child to this damned Bear. We will stand our ground and fight in a way the Bear does not expect this early in the battle. We will take no prisoners. I am not losing another child to this damned Bear. It's become my mantra. My battle cry.
I sent my other children out into the woods, not knowing. My innocent little babies who did not know enough to be afraid of the Bear until it was too late. I am cutting them from the belly but it is a long and difficult struggle. I will not be so naïve with August. I will not send him out. I will keep him home, near to us, and head out to the woods myself in a red cape.
My what a big ax you have, Little Red Riding Hood, the Bear will say. And I will reply, the better to slay you with. I am not losing another child to you, you wretched Bear. I'm coming for you. Watch out.