Teacher Professor

January 21, 2011

PANDAS and Pots

Filed under: Exceptionality issues,Home Things — Teacher Professor @ 4:31 pm

Today… is better.  Not great.  Not anywhere close to “fabulous”, but certainly better.  My pot o’mothering may be cracked, the leaking has subsided. 

There were two things that came out of my post, though…

The first thing is an amazing resource I want to pass on.  A reader emailed me and asked if we had ever considered looking into the possibility of PANDAS as a label for Ray?  Here is the site at the NIMH… (Go ahead, read it- it’s GOOD!)  PANDAS stands for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections and is essentially all of the symptoms of Tourette’s, anxiety and much of what plagues my son. 

We HAD checked out PANDAS before, and the major issue is that Ray’s issues were not “sudden onset”- in fact, many of them were things that he literally was born with (As in, I noticed them from the time he was placed in my arms- eating has been an issue literally his whole entire life).  His symptoms for Tourette’s crept up on us until we noticed it when he was three and asked the doctor about it when he was four, and got diagnosed when he was six.  Add that to the fact that my father and brother both had Tourette’s… and well, he’s got Tourette’s.  Not severe.  Not unmanageable- most of the time.  But noticeable and an issue.  He’s flirted with several labels over his little life so far (ADHD, OCD, ODD, PDD-NOS- a whole alphabet of doctor visits), and Tourette’s and Generalized Anxiety Disorder- Not Otherwise Specified (GAD-NOS) are the ones we’re living with right now.  So… not PANDAS.  But I did figure that someone could use this information- someone looking for help, someone doing a Google search, might come across this blog and get pointed to the web site.  And we have noticed that he gets worse when he gets sick- consequently, we really focus on Vitamin C and zinc around our house. 

So, if you Google “panda” and “mother blog”, you just might get this one… or this blog here.  Depends on the type of panda you’re looking for.


The second thing to come out of that blog is much more disquieting.  I can see what Google search strings led people to my blog- interesting feature of WordPress.  One of the Google searches that was done yesterday was “I just can’t take my son’s Tourettes anymore“.  Just reading that string of words, and knowing that there was someone who had typed those words into the Google search box- looking for answers, looking for support, looking for… something.  You can sense her (I’m assuming it’s a her?) frustration, her anger, her pain and her feeling of being at the end of her rope.  I have no way of knowing if she commented, if she read anything, or if she moved onto something else.  I hope she found something to help. 

But to her, and to all of the other parents out there- I just want to validate that this sucks.  It really, really sucks.  I might be very, very lucky to have a degree in this, and to have had experience in teaching all kinds of kids.  I have excellent resources at my disposal;  I have lots of answers; I have lots of strategies.  But I don’t get to walk away from this.  I don’t get to find the magic pill/strategy/idea to make this all go away.  I don’t get to cure this.  All of us mommies (and daddies) out here in Autism/Disability/Exceptionality Land, we live this, every day.  Professors, therapists, doctors, web pages, and books have lots of ideas about how to make some things better- but next month, tomorrow, heck- by the time Ray’s finished playing his Wii game he’s on right now- that temporary answer/solution/strategy may not be working.  And our job is to find another professional, another web page, another book, and try something new again.  Or do something we stopped a while back and do that again.  Or just keep doing what we’ve been doing and give it more time. 

And as we do that, we might cry.  We might whine.  We might leak.  We might not handle things the way the books, the web pages, or the professionals told us to.  And our job- that we didn’t sign up for, that isn’t fair, that really, really sucks- is to keep trying. 

Because we love them.  Because we know that without us, they have almost no chance at all.  Because we have the strength to go on.  We get that strength from community with other parents, from resources, and from the moments when your child shows you that you are at the center of his being. 

Last night, after two days of storming, Ray turned over in his bed as I was leaving and said “I really love you, Mommy.”  And just like that, the deep crack in me sealed itself- and I was strong again. 

For now. 

Until the next time, when I will cry, I will hate his Tourettes again, I will not behave as I, a professional, would recommend.  And I will go and find the help I need.  Please, Google Searcher, keep searching.  Help and support are out there.  We’re here for you…

1 Comment »

  1. I am so glad you got that validation from him, even though I’m certain you already know it in your soul, and have been reassured by many people. I learned something tonight- I’ve never heard of GAD-NOS before. Thanks for teaching me something new…

    Comment by autismmommytherapist — January 21, 2011 @ 7:57 pm | Reply

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