PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections)

The last several years I have been a mother worried sick about her Mr. Man and his "mental illness".  Now I am a mother with a huge amount of hope.  Why?  Let me explain.


When my son hit about 3-4 he became a "cautious" child.  He was happy and he wasn't generally difficult but he had some quirks.  He hated loud noises most of all.  Things he had been around before began to really upset him, like fireworks and flushing the toilet.  My husband is a bit sound sensitive so we just figured that was the reason.  


By Kindergarten he wasn't happy anymore, he was just plain angry.  After a horrid Christmas season that left me in tears much of the time I made an appointment with his pediatrician.  His teacher had suggested, OK insisted, that I have him tested for ADHD.  Because this runs in the family, I did.  Our wonderful doctor knew right away that it wasn't ADHD, it was anxiety.  And or course, once I heard that, I knew he was right.  We met with a therapist once and she didn't feel like he needed ongoing therapy.  Putting a label on it helped me deal with it.


First grade was better.  He had a teacher he liked a lot better (and who liked him a whole lot better as well).  He got strep a few times (what kid doesn't).  I asked about his tonsils because they looked big to me but his doctor said he didn't want to jump the gun.  I felt like he was doing soooo much better.  He was still "cautious" but he wasn't angry anymore.  I chalked it up to a better school year.  Christmas was still difficult.  He was so worried he hadn't been good enough for Santa to come.  I told him Santa knew his heart was good and that all little boys were naughty sometimes.


The summer after 1st grade he was going to Summer Camp.  He started saying some things every once in a while that made me thing "OCD" but I didn't want to over react, so I just figured it went with the anxiety.  He started second grade and the first few weeks were really hard.  He was angry again.  He had a great teacher who was very strict, but also very consistent and he liked that, even though he was in trouble quite a bit.  She felt he had a "chip on his shoulder".  I knew his anxiety was getting worse.  I kept trying to explain to her through out the year about his anxiety issues.  She just thought he needed more discipline.

By late autumn I started to notice a few more quirks that had me worried.  He began putting his garbage can outside of his room every day.  He would tell me he just couldn't play with it in his room.  One day he began shaking his head while he was watching TV.  I asked him what he was doing.  He said that he had to shake his head whenever he could see a garbage can to make sure that "the color would stay in the world".  I walked out of the room and began to sob.  In December my mom had been watching him and told me that he had told her he felt like he had put his finger by his bum and then felt like he "had" to lick it.  This obviously had her concerned.  I mentioned my OCD fears and knew that I had to do something about it.  Christmas was a little better because we made everyone stop the "you better be good or Santa won't come" bit.  He was still getting strep quite often. 

In February we started seeing a psychiatrist.  She mentioned having his strep titers measured because of PANDAS.  I looked it up, saw that the treatment was the same as for regular OCD and figured it didn't matter if it was caused by strep or not.  She had him do some Exposure and Response therapy regarding the garbage and it seemed to do the trick.  I also mentioned he constantly pushed his stomach in and out.  She just wanted him to focus on that (mindfulness) when he realized he was doing it.  By summer he had pretty much quit.  He seemed to be doing so much better she suggested we wait until Fall to see her again if we needed to.


Summer was fairly uneventful for him.  My other son was having some gastrointestinal issues and I was spending my energy there.


3rd grade started with him angry and mean again.  I began to wonder if it was just how he felt about starting school, even though he always seemed excited to start school again.  He promptly caught strep a few more times.  His teacher was OK, but I was grateful he had her because she didn't give much work and her husband's children both had OCD, so she knew what we were up against and was pretty understanding.  We started seeing a new therapist that we really liked, though I wasn't so confident he knew much about OCD.  But things continued to go up and down.  By October his doctor felt he needed his tonsils out.  I agreed.  I wondered if his HUGE tonsils were why he didn't sleep well at night.  I couldn't believe he was still sleeping on our floor every night.  I had hoped he would grow out of it.  We made an appointment with an ENT.  The day prior to his appt. he told me his throat felt weird.  I just knew it was strep again so I took him out of school to be tested.  Yep.  Another round of amoxicillan.


The day after that we met with the ENT.  I mentioned the strep.  He looked in his ears and nose and said that he also had 2 ear infections and a sinus infection.  He switched the antibiotic and said to schedule the tonsillectomy.  His tonsils were horrid.


He had his operation the week prior to Thanksgiving so he wouldn't miss much school.  He did really well.  Much better than I had expected.  I seriously had thought we'd have to sedate him to get him there.  But he did great.  After the operation he had another round of amoxicillan and seemed good to go.  Our Christmas was wonderful.  We couldn't figure out exactly why but figured it was because we had started making him go to bed earlier.  He also began sleeping through the night.  


School started up again and he was still alternating between good times and hard times.  I figured that it just the way it was.  We decided to start him on Zoloft.  We couldn't quite tell if it was helping, but were hopeful.  By Summer he was doing really well and we again decided not to continue therapy through the summer.  I had asked his pediatrician about some odd behaviors that I thought seemed more like tics than OCD.  He wondered if I should see a neurologist.


4th grade started and he was actually a bit a happier than usual.  Until the second week and his OCD went nuts and his behaviors became obvious tics and were multiplying.  And then his brother mentioned that he felt like he had a bubble in the back of his throat while we were at the grocery store one day.  I decided to walk over to the Express Clinic in the store and have him tested for strep. I could tell the nurse thought I was nuts but it came back positive.  I wondered if there was a correlation to the OCD and tics worsening.  He placed in the low math and middle reading classes which really surprised me.  He'd always been in the high classes.  The teacher showed me his paper and remarked that his handwriting was awful.  It had been awful since first grade.  I had him tested for a learning disability but it came back in the normal range.


In October we met with the doctor again.  I mentioned the increase in compulsions and tics.  He said he'd treated little girl with PANDAS before.  He took a throat culture and it came back negative.  I figured that meant it wasn't.  Somewhere in my mind I thought somehow they were related but I didn't know how.  I also realized the Zoloft was making him fat and manic.  I began to slowly taper him off and have noticed zero difference in the OCD or tics.


His tics and behaviors continued to seesaw.  In late December 2010 I was at the library and I saw a book called Saving Sammy by Beth Maloney.  Being about a boy with OCD, I checked it out.  As I read his story things began to click. 


PANDAS means that their bodies have produced antibodies to the strep infection like they should.  But then something goes wrong and those antibodies begin attacking their basal ganglia, causing OCD, tics and ADHD.  Because it is the antibodies causing the problem, the child can have a reaction to just being around someone else who is carrying the strep bacteria.  The reaction causes their body to produce more antibodies and this produces worsening behaviors.  As the reaction subsides, the behaviors generally let up, at least some.  Sammy had an awful case and suffered a year before his mother started to piece together what was going on.  A wonderful doctor, Dr. Nicolaides in New Jersey put him on long term antibiotics and he slowly got better over the course of several years.


After I devoured the book in one sitting, I started doing more and more research and realized that there are doctors and researchers who believe the antibiotics are the key.  The NIMH still does not recommend antibiotic treatment for PANDAS, even though children are getting better when using them.


I immediately called our pediatrician.  We went to see him last week and I presented my case.  He agreed to give him a 10 day course of Augmentin.  I am keeping a detailed journal of our days.  I can only hope that it helps.  I think I can see some improvements already.  He had red dye #40 today, which ALWAYS leads to increased tics.   Today it doesn't seem to have affected him the usual way.  Not everything is gone, but it seems better.


Wouldn't it be amazing if a lot of the pediatric onset cases of OCD and/or Tourettes ends up being a reaction to common strep that can be treated?  I am so amazed that doctors actually figured this all out!  I'm also amazed at the things that are out there that we just don't know about until it happens to our child.  I wonder how many kids suffer with this who don't have parents that research like crazy how to heal them.  It makes me sad to think about.

Do I know for sure Mr. Man has PANDAS?  No.  Do I think he does.  I really do.  He fits the profile and his case history seems to be pretty typical of PANDAS patients.  As we move through this puzzle I am determined to get the word out.  People need to know about this!