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Saturday, September 28, 2013


I've debated whether to post this story.  It is extremely emotional moment for me.  After reminding myself that my purpose in posting about PANDAS is the hope that just one person will recognize the signs earlier than we did, I decided to post it. So here is the story.

This past Monday, we were told to discontinue Brayden's newest antibiotic as it wasn't giving us the results we had hoped for.  By Wednesday, his behaviors were gradually getting worse.  He would cry for 30 minutes straight simply because he couldn't find something to do.  He couldn't do his math homework.  He started needing the bathroom all the time.  By Thursday, his tics had returned. He was swishing at his neck, clearing his throat continually and sucking on his fingers all day.  He was talking like a toddler again.  We were in a full regression.

On Friday, I had three errands to run.  The library, boy scout store and Trader Joe's.  All enjoyable outings for Brayden and he agreed that he was eager to go on them and get out of the house.  I was just hoping that his little sister avoided aggravating him in public and knew that he generally kept it together in public.

Here's where the story really starts.  We arrived at the library.  Brayden and Ellie immediately were drawn to the fall market stand in the kid's section and eagerly began playing with it.  I went to the nearby movie rentals to grab some for the weekend.  Eventually, Ellie aggravated Brayden by not giving him what he wanted. One thing you have to understand about Brayden is that normally he is a very good big brother that gives his little sister anything she wants without thinking twice.  When he is inflamed with PANDAS, he loses this rational thought process and has no emotional tolerance.  I reminded him to be patient with Ellie and that he could have his turn with the play food in just a minute.  Well, he did not like that answer and stomped off.

Brayden is a rule follower.  He knows to stay in the kid section so I never thought twice about where he stomped off to.  I proceeded to check out our movies in the kid area and suddenly had this panic over me that he was not present.  I looked around and no Brayden.  I grabbed Ellie and quickly looked down each isle.  No Brayden.   I checked the bathrooms, the car, the adult section.  He was missing.

My motherly panic set in as my brain tried to think like him and I feared he might be walking home.  He had tried to run away for the first time the night before, stopping at the front door with fear of the dark.  He had never left my presence in public but I quickly reminded myself that PANDAS behavior is so incredibly unpredictable.  The child you think you know is no longer there.

I immediately alerted the librarian and they manned the doors and started searching the library.  I dragged Ellie through the perimeter of the library while they paged his name.  I was about to call the police when I saw him.  Huddled up against the end of a row of books.  In the kid section.  Crying and rocking.

I went from feelings of joy to anger to sadness to relief.  I told the librarian he had been found and within her earshot told Brayden he was grounded.  I reprimanded him for hiding in the library when he knows better. He told me nobody loved him and he wishes he was dead.  What?  I immediately reprimanded myself for feeling the need to punish him in front of the librarian just so I could redeem myself as a parent.  This poor kid is never punished or grounded.  He is a good kid.  He doesn't do stuff like this.  PANDAS does.  I followed through with his grounding but he didn't care.  He sobbed at home curled in a ball for the next hour asking to die.  I was heartbroken, he had never hated life so much.  He let me hold him.  We talked about how this horrible PANDAS is making his brain make bad choices and feel so sad.  I told him how much we loved him and everything he brings to our family.

I decided after that moment that I am no longer on my doctor's agenda of wait and see.  The conservative approach is obviously not the right approach. If I have to drive across the country to get the help he needs, it will be done. PANDAS will not win!


Casey said...

Hi Stacey,
I've been reading your blog from time to time and wanted to send good thoughts your way. We are in the middle of some full blown PANDAS stuff over here too, my 5yo daughter and 6yo son both have it (and both have different symptoms from the other). My 6yo sounds like your son and is currently starting to come out the other side of some severe debilitating OCD/intrusive thoughts. Hang in there, you're doing a great job and I know how rock bottom it feels to not have doctors who are able to help.

Stacey Murphy said...

Thanks Casey for the comment! We believe my 7 year old has PITANDS but she is not nearly as bad off as our 8 yr old. I appreciate the thoughts and knowing that I'm not alone in this battle always helps!