Thursday, March 14, 2013


Lions and tigers and PANDAS, oh, my!  Okay, that was a lame attempt at making the unfunny....funny.  Sometimes you gotta' laugh, right?

PANDAS.  If you don't know about it....learn about it.  And tell everybody that you know.  Because it could save the sanity of a child and/or family that you know.  Literally.  Save their sanity.

More and more I am convinced that often mental illness is the same as any other illness.  It is infection or some other disease state whose symptom is behavioral instead of or in addition to "medical".  And PANDAS fits that to a "T".

I could quote a lot of statistics and research here, but I'm just going to cut to the chase and give you the nitty gritty of what I know.  PANDAS is an autoimmune issue in children (but not always) that researchers originally thought was due to only strep infections.  It is an infection that causes a sudden onset of OCD and/or tics and other behaviors.   Researchers have found, this disease can actually be caused/exacerbated by other infections such as chronic Lyme Disease (which many doctors don't believe in or don't know all of the symptoms of or test and/or treat inadequately), mycoplasma infections, staph infections, etc., etc.

Other symptoms of PANDAS are separation anxiety, bedwetting or frequent urination during the day, sensory issues (as in sensory processing disorder), concentration problems, irritability (sometimes this can include aggressive behavior), depression even to the point of suicidal thoughts, immature behavior. The is the short, general list.  

PANDAS is difficult to treat, to be sure.  Add to the lengthy treatment time the fact that many, many doctors and insurance companies do not recognize PANDAS as a disease itself and often refer out for counseling and psychiatric treatment, and you've got a disease that can steal a person's childhood altogether.  It can wreak havoc on family relationships and can rob a family of any savings they may have as well as money that they don't have but borrow to heal their child.

Early diagnosis is huge.  Getting doctors to recognize it is even bigger.  And educating parents is enormous.  Who will fight for a child like their parent?  Not a doctor--not even the best-intentioned one is invested like a parent.

At this point, PANDAS and Lyme and other infections have taken 7 of my daughter's 11 years....and she is not healed....yet.  We didn't even have a clue what was going on until 2 years ago--after we had seen pediatricians, therapists, psychiatrists, autism specialists and been evaluated by the school district.  And even then, we didn't find out about PANDAS through them.  It was googling and questioning and remembering that once, years ago a doctor had mentioned PANDAS and then went on to refer us to a counselor.

But after getting confirmation of PANDAS through Madeleine Cunningham's testing at Oklahoma State University, we still could not get treatment from our local pediatricians who gave us the speech about how PANDAS was unproven, and we had to be careful of following unproven lines of treatment, and by the way, if we didn't come up with some plan for vaccinating our children, we would no longer be seen by the practice (okay, I'm a little disgruntled).

We saw at least 3 local pediatricians who would do nothing but run us out of the office and then found a functional medicine MD who recognized PANDAS but hadn't had enough experience with it to feel comfortable treating it.  And she tested us for Lyme.  So then, after quite a bit of arguing back and forth about whether or not this was real and the true cause of everything, my generous husband and I agreed to see a Lyme doctor several states away.  Ahem.  And may I just say, he was not all he was cracked up to be.  And although we had never taken my girl of off psych meds, we went back to the idea that she must just have bipolar, perhaps brought on by PANDAS and/or Lyme.

Frankly, it was more than we felt we could swing to take us all to the Lyme doc out of state.  I knew that we could not continue to travel the country paying thousands of dollars to doctors who did not take insurance.  And we did the best that we could for our girl.

After two more years on pysch meds with no significant long-term improvement, we were seeing more side effects than we had ever seen before.  To the point that we had to wean down off of meds altogether, had a strep exposure soon after and a very obvious OCD flare until we started antibiotics.  And this brings us to where we are today.  Treatment for PANDAS.  And Lyme. And other infections.

So I end this post by telling you again, if you know a child who has a sudden onset of OCD or tics, tell the parents about PANDAS.   If you are the parent, educate yourself about PANDAS.  And then advocate for your child.  You could save someone's childhood.  You could save someone's family.  Tell everybody you know.

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