PANDAS

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.

just some thoughts.....

Another day, another exhausting episode or two with only more to come.  Today is the first day of summer.  The first day that my daughter will be home all day, every day, with the exception of a couple of VBS programs, some math tutoring and a mini-vacation or two.  And I look ahead to a very tiring time.

She has now been on something similar to Tegretol for three months.  Initially, she had two fantastic days, and then back to the same old song and dance.  Her psychiatrist increased the med from 100 mg twice a day to 300 mg twice a day.  I would say that it is affecting her like water.  Wait, water would probably be better in that it might slightly detox her.  She is also on Abilify, which we have increased substantially.  To the point that I really don't want to go any higher.

I look back over the past 18 months, and although we have had some times that have been a little more bearable, there really has been no good time.  What's more, her maturity level has either decreased or she's just been passed up by other kids her age.  And she now has these obsessions, which are relatively new.  Not like you think of an autistic kid playing with toy car wheels, but obsessed over a sad story that she saw on the internet and trying to corner anyone she can to watch the rather lengthy video.  Making posters about the baby boy in the video, etc., etc.

So, I'm not really feeling the medication groove right now.  We're backing down off of Tegretol, increasing vit c, niacin and researching some more.  Strengthening resolve with yeast detox.  More water intake.  Trying to boost her immune system, increase her detox, support her liver.  She'll stay on a high dose of Abilify.  At least for right now.

Our psychiatrist says he's going to have to do some more research.  Always a banner day when your psychiatrist who has dealt with things like this for 30+years is stumped by your case.

So I am now reading Body Ecology by Donna Gates and What Works for Bipolar Kids by Pavuluri.  I'l let you know what I find out....