Friday, September 28, 2012


     Lions and Tigers and ....Pandas??  Really?  Today I had 1st grade school conferences. I am pleased to report that all of our hard work in regards to sensory issues, auditory processing therapy, understanding a diagnosis called PANDAS has paid off!

     My children had a very, very rough start in kindergarten. My children's kindergarten teacher started the year out optimistic. It quickly went to confusion. Which led to frustration and eventually at least one of them could not wait for the year to end fast enough......9+ months yielded no noticeable change in regards to my children's behavior. In fact it got worse, especially for Everett. Viewed as High-strung, but with time to mature, Everett's teacher was sure that his endless high energy, inability to sit at circle time, impulse control and a problem with following the rules would  slowly abate with enough positive reinforcement and maturity.

    Well, it didn't. By mid-spring, Everett's usual antics turned on a dime overnight. For the worse. I mean overnight. Hard to believe, but my little guy went from high-strung, borderline adhd to looking classic Autistic overnight. He went to bed one way, and woke up  another way. I now had a child who was spinning his body over and over again and again all day long. His somewhat temperamental,  nature now was explosive and out of control.  And the nail biting... gnawing was a better word.  Constant, all day, and when he ran out of fingernails,  he started ripping strips of skin off the pads of his fingers...He started wetting the bed every night. He became so out of control that my house quickly got turned upside down and I thought he must have a brain tumor.

     I called his doctor. To make a long story short, Everett, several months later was diagnosed with a very rare auto-immune disorder called PANDAS. When his pediatrician first suspected this I thought, no, NO WAY.   But I happened to respect his doctor, he has always been wonderful and right on (he knew my kids well) with both my kids and he has always truly cared. So I decided to listen. After about a half hour of talking I decided to believe him.

      PANDAS: Simply put is believed to be an inherited glitch of the immune system.  When such persons, like Everett encounter the Strep throat bacteria, the immune system goes haywire.  It does a couple of things wrong.  First, when Panda's kids encounter strep their immune system fails to respond and cause strep throat symptoms.  These children often run no fever, have no sore throat, and consequently have a history of at least one Scarlet fever incident in their history. Everett had Scarlet Fever when he was three.

     The second thing that goes wrong with Panda's kids immune system is that when it encounters strep, it is thought that their system makes "imperfect" antibodies with a less perfect GPS.  The immune system goes on antibody keeps making them and making them...even if the child is treated and the strep in eradicated.   Problem: The "less perfect" antibodies with the faulty GPS not only attack the strep bacteria, but it also attacks the frontal lobe of the brain called the Basil Ganglia. THE IMMUNE SYSTEM THINKS THE BRAIN HAS STREP!  So it attacks it.....weeks after the strep is gone, the immune system is still attacking the brain and eventually causes enough inflammation to cause a whole host of neurological reactions...ocd behavior (Everett's chronic nail biting), erratic mood swings and explosive behavior, they often start bed wetting after initially being dry.  Fears are a biggie:  Afraid to sleep alone, enter rooms by themselves, are just a few of my Everett's fears. While many kids have fears, it is important to understand that there is a  "big picture",  of where these fears play a role in the diagnostic criteria for Pandas. 

     There are a whole host of behaviors that go into the clinical diagnosis of Pandas. The one criteria  that needs to be demonstrated is the SUDDEN ONSET, OVERNIGHT BEHAVIOR CHANGE witnessed by parent/caregiver.  From what I have learned, every child ever diagnosed with PANDAS meets this part of the criteria.

      If a child is suffering from Pandas, it is likely that he has been dealing with it for years. What happens is that each consecutive bout (which last about 8-12 weeks) leads to a more severe more apparent set of symptoms.  In Everett's case, it it now made sense that he had month's of looking less high-strung, appeared to be maturing, settling down, and then  back to square one, but worse. We as parents finally had answers to all these wax/waning behaviors. Is was his/these inconsistent behavior traits that cause many teachers, doctors, to hedge on a adhd diagnosis because he never really fit any other profile completely.

     Daily I thank God for Everett's pediatrician who led us on the journey to finding an expert and eventually a diagnosis.  It took six weeks of antibiotic therapy to rid his system of his spring Strep throat infection.   Several more for his brain to calm down.  He is doing great . Everett's teacher today told me that he was not the kid that she expected to encounter judging from his kindergarten teacher. Everett comes to school, calm, focused, he is aware and cares about his behavior and is doing well academically.

     Everett will encounter Strep again. He will go into another reaction. The good news.  He will have a IVIG treatment, and chances are very high that he will never have Pandas again.  It can be treated with no long term effects. I share this information because if it were not for a doctor who cared to think out of the box a choose not to stick an easy diagnosis like adhd or ocd  we would still be as parents stymied, scared, and confused. If your child is displaying many of  these behaviors, look up PANDAS on the Internet.

 A word of caution: Pandas is a very rare disorder.  There is specific criteria need to come a diagnosis.  That being said, If your child is displaying some of these symptoms, and there are many symptoms as well, it's worth checking out. I think a well informed parent is a good one. QAnnie

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