Are you crazy?!?!?

Logo of the New England PANS/PANDAS Association-Great website for more info, just click the picture for a link

So, lately I feel like a lot of people might want to ask if I’m crazy after seeing my son. I think it is really hard to see him seeming so well and square that with me saying I’m completely tied to him and he is incapable of going to school.

He is doing so well! He is making gains weekly, maybe even daily this week. And it is amazing to witness. Often, he’ll just suddenly do something he hasn’t done all year. One day, he randomly ate meat. It had been months since he basically gave up all proteins! The other day he played with a child he didn’t know at the playground. WHAT?!?! It was so awesome. Today he dressed before breakfast and put all his clothes on by himself!

So I wonder if people see us looking normal and then I speak with them about doctors appointments or how tired of struggling I am and they walk away scratching their heads.

Pulling B out of school has cut down on the germs coming through our house and really helped with the level of stress in our household.  That said, it does indulge his need to be with me to a degree that I sometimes have trouble tolerating. It’s not like I pulled him from school and can leave him with a babysitter. Some weeks, I have been able to pop out to the store when someone is over or give him to grandma for a few hours, but others he just can’t handle the separation.

Our neurologist, a leading PANDAS doctor, says if he is still not able to go to school and struggling this much with separation anxiety then his case is still severe. She recommends IVIG (2 days of intravenous healthy antibodies from blood donors). We have scheduled and cancelled IVIG twice. I think he is still improving and we need time. I don’t want to expose him to donated blood product unnecessarily. Not to mention that needles are real trauma to him. So, we’ve rescheduled again for January and I feel more confident that we will be making a real decision next time instead of postponing till we can get our heads around how impaired he is or isn’t.

I think he is healing. It’s been one hell of a year for all of us, he just came off a month of steroids at the end of September. They had terrible side effects for him and increased his PANDAS symptoms dramatically. The hope was they would reduce the inflammation in his body and suppress his immune reaction (it’s his own antibodies attacking his brain) and maybe they did, but I also think it has taken a long time to come out of his system and for the side effects to subside.

What he still suffers from mostly is anxiety. It usually has to do with separating from me or social situations. The good news is he is doing so much better with the people and kids he knows-pretty much normal if he sees you a lot. The bad news is he usually cannot talk to other children or adults he doesn’t know. He just shuts down and glues himself to me. We saw a Psychiatrist last week who said it looks like severe separation and social anxiety always looks (one of the hard things in diagnosing PANDAS-kids are often diagnosed by their symptoms not the cause) and we should just treat it as such. Um, okay….

B Wonder PL

Photographing Wonder at the Renwick. We also waved to French President Hollande as he arrived at the White House that morning.

But that day, he sat in an office and talked to that doctor (he had never met!) without us present. And then later that same day, he played and played and played with a boy at the playground.  The day before he whined on the couch for 3 hours while grandma, whom he adores, was watching him.

ARRRRGH. PANDAS on so many levels makes no sense.

So, yes, I am crazy. For days he is there and making strides everyday with small lapses, on the next day he is gone and unable to do anything, and then the next day he is the best he has been all year. After my husband and I went to Paris, things were pretty rough. And the drab reality of our ongoing PANDAS crisis (now over a year!) weighed heavily on me. I was totally surprised, the trip had been so great and B had done so well.  I expected nothing but sunshine and rainbows as we drove home from the airport…. Duh! After mourning reality for a couple of weeks, B and I both started to settle back down.

I decided I badly needed some celebration and contact with the rest of the world. And am now sharing a happy moment on my private Facebook page everyday. Man, does that help!

And the little wins keep adding up, but the crazy, that hasn’t really left us yet.

B in RC PL (532x800)

Just keep going little brain, you’re so close!!!!

2 Comments on Are you crazy?!?!?

  1. Kim Dunbar
    March 28, 2016 at 8:12 pm (2 years ago)

    Thank you for sharing your journey. We are there right alongside you and even though we’ve never met, I feel like we have been friends for years. My son is Will and he is 11. We have dealt with the separation anxiety for years, but were diagnosed with PANDAS last year after a horrific trip to Disney World in which we were sure my son had been traumatized by something unspeakable there as his behavior made no sense. Fine one day and literally out of his mind the next. My little guy is my best friend and I look forward to the day that he is “back” with us. xoxoxoxoxo

    • Ali
      March 28, 2016 at 9:05 pm (2 years ago)

      Thanks, Kim. I have a lot of PANDAS facebook friends. I didn’t even use facebook before this! And I swear they have carried me through much of the last year. It’s helpful to know you’re not alone. I wish you and your son the best. I know what a hard road you walk.


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