The PANDA in the room

The PANDA in the room is taking up too much space, it has appalling manners, and I’m finding it hard to breathe.

B First Day 2015 PL

First day of school 2015

I wrote that sentence on July 12th but unfortunately feel the same way still. I haven’t felt that way non-stop all these months and I would say the situation overall is better but definitely we are not where I thought we’d be at this point. I thought we’d be past it. I couldn’t even let myself imagine he wouldn’t be able to go to school this year. Didn’t occur to me he’d still be sick… denial? maybe?

Our son improved around the time of his tonsillectomy. I actually think it began about a week before the surgery, so once again we don’t really know what caused the change. After the recovery period, we were even able to send him to ‘camp’ with his sister for a few hours a couple of times at his old preschool. He even ate there! Once I was late for lunch and he had started eating without me! Take that, OCD. My husband and I would make happy faces behind B’s back as things just seemed so normal.

We headed to Florida at the start of July to spend a whole month at Happily Ever After, the vacation rental we renovated last year. Last summer was so much work and we were so exhausted from PANDAS this year, our plan was to have fun… to go to Disney, finally get those pictures made on the beach I’ve always wanted, eat out a lot, and swim, swim, swim while soaking of the sun and enjoying not having a routine or doctors appointments!

But about a week into our time there, he changed suddenly. We started seeing many of the behaviors that we thought had been left behind. He was walking around in patterns and worried about hair on his food. Everything became difficult and emotional again. Disney was a nightmare, he looked completely lost and scared and clung to Chris all day.

We think this was caused by losing his front teeth. Apparently it releases all kinds of normal oral bacteria into the body when a tooth is lost, but in a PANDAS kid the messed up immune system gets alerted and if the excess strep antibodies are still there with access to the brain, the assault intensifies and the PANDAS symptoms flare up.

He slowly came back to us again and we had a great couple of weeks before school started with more travel to see family in Alabama and Delaware. And we did more blood tests and saw the Neurologist before school started. Since his symptoms have never totally left, we were not surprised to learn that he still has an elevated level of strep antibodies in his blood. That’s what is attacking his brain and causing his lingering symptoms but it is lower than when we last tested in April (it takes a long time for this to change so there’s no point in testing all the time and blood tests are hell when he’s feeling a little better).

So, off to school he went.

To learn more about PANDAS, or our PANDAS story, follow these links: 

PANDAS Network

Our PANDAS Story

2 Comments on The PANDA in the room

  1. Sarah
    September 29, 2015 at 11:40 am (2 years ago)

    I am so sorry your family has to deal with PANDAs. Have you looked into getting into a protocol at NIH in Bethesda, MD?

    Reply
    • Ali
      October 1, 2015 at 7:32 pm (2 years ago)

      Thanks, Sarah. Sounds like you’re familiar with PANDAS. When I first found PANDAS via google at the start of our ordeal, I emailed Sue Swedo at NIMH directly from an email I found on some website and SHE WROTE BACK! Immediately.

      They were not doing any PANDAS studies at that time but could have helped us through a Natural History Study (I may not have the name exactly right). At the time it sounded like we had the correct diagnosis and the study would have meant a lot of tests he may not have needed. I thought, “we found it, we treat it, he’ll be better in a month or so…” Duh. I’m considering calling them back now.

      Although, I think some of the tests they do would be harder now as he’s at a better level. So for example, when he was really bad doing a blood test was easy because he just laid in my lap, now he’s more functional and aware it takes 3 adults to draw blood!

      We’ve met with several doctors this week and are digesting a bit before we take next steps. I hope you haven’t been through this, too. 🙂

      Reply

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