Articles, Blog

New Documentary Sheds Light On PANDAS

September 21, 2019


OUR NEST GUESTS ARE HERE TO GET THE WORD OUT ABOUT A MISUNDERSTOOD, VERY FRIGHTENING CONDITION CALLED BAN DADS. AND THAT — PANDAS. IT IS ASSOCIATED WITH STREP INFECTION. ONE IN EVERY 250 CHILDREN IN THE U.S. MAY SUFFER FROM PANDA AND IT GOES UNDIAGNOSED AND OFTEN MISTREATED. THAT IS WHY EMMY-NOMINATED TIM — CREATED A DOCUMENTARY ABOUT IT THAT WILL SCREEN TONIGHT IN PITTSBURGH. AND WE’LL SPEAK TO HIM AND A PANDAS MOM IN A MOMENT. LET’S TRY TO EXPLAIN IT. [ INDISCERNIBLE ] PANDAS HELP IS REALLY, REALLY DARK, SCARY AND ISOLATED PLACE. Reporter: YOUR NORMAL LIFE IS GONE OVERNIGHT. AND YOUR FRIEND DON’T UNDERSTAND WHY. HE WAS A DIFFERENT KID. IT WAS LIKE LOOKING AT A DIFFERENT KID IN THE SAME BODY. NO WAY THAT THEY COULD CONCEIVE THE POSSIBILITY THAT HE WAS NOT LIKE THAT TWO WEEKS AGO. KIDS ARE NOT SUPPOSED TO BE PERFECTLY HEALTHY ONE DAY AND COMPLETELY TORMENTED AND SCAL PSYCHOLOGICALLY ILL THE NEXT. I CAN’T BREATHE. I CAN’T BREATHE. PANDAS IS ASSOCIATED WITH STREP. YOU GET STREP THROAT AND THEN YOU GET THE OCD. AND KIDS WITH PANDAS, THEY DON’T LEAVE THEIR BEDROOMS SOMETIME. THEY CANNOT LEAVE THEIR HOUSE. THEY’VE GIVEN UP PLAYING WITH THEIR FRIENDS AND THEY ARE PSYCHIATRIC CRIPPLES. IS IT TRAGIC WHEN A CHILD HAS PANDAS. SO WE GIVE THEM PSYCHIATRIC DRUGS AND THAT MAKES THEM WORSE AND WORSE. WHETHER IT IS GOING — WHEN IT IS GOING TO KICK IN AND WHEN IT IS GOING TO WORK. IT WASN’T WORK BECAUSE THEY WERE NOT TREATING THE ACTUAL PROBLEM. I THINK THAT IS IRRESPONSIBLE. WOW! THAT IS HARD TO WATCH AND VERY MOVING. WELCOME NOW THE DIRECTER OF THAT POWERFUL FILM AND A PANDA MOM HERSELF THAT JUST HAPPENS TO BE A DOCTOR. THAIRPG YOU FOR BEING HERE — THANK YOU FOR BEING HERE. I GOT CHOKED UP SEEING THE KIDS IN PAIN. I CAN’T IMAGINE IT. YOU HAVE FOUR CHILDREN. THREE OF WHOM HAVE PANDAS. YES. TELL US MORE ABOUT THE DISORDER. SO WITH PANDAS, WHAT YOU SEE IS OVERNIGHT ONSET OF THESE SEVERE PSYCHIATRIC SYMPTOMS. SOME ARE TICKS AND IMPULSIVE BEHAVIORS. IN THE CASE OF MY 11-YEAR-OLD, HE WAS 3 AND A HALF AND ONE DAY AND THEN HE WOKE UP ONE DAY AND HE STOPPED EATING. HE REFUSED TO EAT FOR THE NEXT FIVE YEARS HE WEIGHED 39 POUNDS. HE PLUMMETED IN GROWTH HE WENT FROM A CALM CHILD TO VIOLENT MELTDOWNS. THREATENED TO KILL HIMSELF AND KILL US AND BITE AND KICK AND SPIT. AS A DOCTOR, YOU SAID THAT YOU HAD NEVER HEARD OF THIS. CORRECT. HOW DID YOU FIND OUT ABOUT PANDAS AND WHAT HAPPENS NOW? MY SON HE HAD ONSET DURING MEDICAL SCHOOL, AND I WENT ALL THROUGH MEDICAL SCHOOL AND RESIDENCY TO TRY TO FIND OUT WHAT WAS GOING. WE SAW 15 DIFFERENT SPECIALISTS. AND WE GOT A WHOLE LIST OF DIAGNOSES AND NONE WERE CORRECT. WE WERE FINALLY ABLE TO GET HELP. AND I SPEAK TO OTHER DOCTORS ABOUT THIS. THERE IS SUCH A LACK OF AWARENESS. IT IS BROUGHT ON BY STREP, IS THAT RIGHT? YES. PANDA IS TRIGGERED BY STREP INFECTION LIKE STREP THROAT. IT MEANS THAT JUST ABOUT ANYTHING CAN TRIGGER IT. AND OTHER TYPE OF INFECTIONS LIKE A LIME AND IN SOME KID THE TRIGGERS CAN BE NONINFECTIOUS AS WELL. BUT THE COMMON THING THAT YOU SEE IS THATTEN ACCUSE E — THAT AND ACCUSE EVENT TRIGGERING THIS BECAUSE THE BRAINSES ARE INFLAMED. HOW DID YOU BECOME AWARE OF THIS AND WHY DID YOU WANT TO HIGHLIGHT THIS DISORDER? I ENDED UP AT A PANDA CONFERENCE IN 2013. AND I MET PARENTS. AND THE COMMON STORY THAT I KEPT HEARING BY THE DOCTOR IS THAT THESE PARENTS CAN HAVE A NEUROLOGY AND RHEUMATOLOGIST AND PSYCHIATRIST ALL SAYING THAT THE KIDS HAVE A DOCTORED AND THEY NEED TREATMENT AND THE INSURANCE COMPANY WILL DENY COVERAGE. AND THAT WAS MY ALL IN MOMENT. WHY IS THIS CONTROVERSIAL AND WHY ARE THEE DESPERATELY ILL CHILDREN BEING DENIED COVERAGE. AND YOU DID THIS FILM CALLED MY KID IS NOT CRAZY THEY’RE HAVING NERVOUS BREAKDOWNS AND OCD AND TICKS. I CAN’T IMAGINE AS A PARENT TO SEE YOUR KID GO TO BED NORMAL AND WAKE UP LIKE THAT. IT IS DEVASTATING FOR THEM. BUT I THINK WHAT IS WORSE AND EVEN HERE IN PITTSBURGH, IF A PARENT WERE TO GO TO CHILDREN’S HOSPITAL IN PITTSBURGH, THEY MAY NOT KNOW WHAT TO DO WITH THIS. IT IS AN EXCELLENT HOSPITAL. BUT WE NEED TO OPEN UP MORE OF THIS CONVERSATION. AND WE HOPE WITH A FILM LIKE THIS, THAT WE HAVE A CONVERSATION ABOUT THIS IN PITTSBURGH AND INVOLVE THE CHILDREN’S HOSPITAL. AND MAYBE THEY INVITE THE DOCTOR HERE FOR IT AND START THIS CONVERSATION SO THAT THE KIDS CAN GET THE TREATMENT THAT THEY NEED. CAN YOU TELL US MORE ABOUT THE DOCTOR. HE WORKS AT NIH AND INVESTIGATED THIS AND SHE CAME ACROSS A DOCUMENT IN THE 1980s AND WROTE A PAPER. THROUGH THE YEARS, SHE HAS BROUGHT THIS DISEASE ALONG. CONTROVERSY KIND OF HIT. IT WAS LIKE, WE CANNOT NECESSARILY — YOU MIGHT NOT LINK A STREP INFECTION THAT HAPPENED FOUR OR FIVE WEEKS AGO WITH THIS RAPID ONSET OF OCD. IT IS TOUGH TO PULL THOSE TOGETHER. NOW THE STREP INFECTION IS GONE AND IT’S BEEN LONG GONE AND NOW IT IS REALLY TOUGH TO PROVE. AND THAT IS WHERE THE DIVORCE LIES IN CAN YOU PROVE — WHERE THE CONTROVERSY LIES IN AND MAKES IT HARD TO PROVE. THEY’VE TIED THIS TOGETHER IN A NICE LITTLE BUNDLE. YOU ARE ONE OF THE VERY FEW, IF NOT THE ONLY DOCTORS TREATING THIS IN WESTERN PENNSYLVANIA. HOW IS THAT BEING HANDLED? THERE HAS BEEN A DIFFICULTY FOR PARENTS IN THE AREA TO FIND PHYSICIANS THAT ARE WELL VERSED IN PANDAS AND WILLING TO TREAT AND TO BE EDUCATE BAD IT. SO WINED UP GETTING SOME PRETTY — DESPERATE PARENTS ARE GOING THROUGH THE STRUGGLE WITH THEIR CHILD BUT WHO HAVE BEEN TURNED AWAY BY DOCTOR AFTER DOCTOR AND THEY’RE SORT OF WANDERING IN THE DESERT OF THESE MEDICAL REFUGEES. ALL THEY WANT IS A BASIC DIAGNOSIS AND TREATMENT AND FINDING SOMETHING BASIC. IT’S BEEN SO HARD FOR THEM. SO WHAT ARE YOU PROVIDING FOR THEM AS FAR AS TREATMENT GOES. IS THERE A TREATMENT OUT THERE FOR THIS? SO INITIAL TREATMENT WITH PANDAS IS TO DO A LITTLE BIT OF A WORKUP AND TO START ANTIBIOTICS. IF THE CHILD HAS GONE SICK RECENTLY, SOMETHING SIMPLE AS IBUPROFEN CAN MAKE A BIG DIFFERENCE AND THE FURTHER ALONG CASES WHERE THEY’VE BEEN MISS DIAGNOSED AND IT’S BEEN A LITTLE WHILE, ONE OF THE MOST OF THE EFFECTIVE IS. VIG. — IVIG. IT IS A TRANSFUSION OF IMMUNE CELLS INTO THE CHILD. AND THAT CAN MAKE A TREMENDOUS DIFFERENCE. UNFORTUNATELY IT IS DIFFICULT TO GET THE INSURANCE COMPANIES TO PAY FOR THAT SO I SPEND A GOOD AMOUNT OF TIME BATTLING WITH INSURANCE COMPANIES TO GET THE KIDS THE TREATMENT THEY NEED. AND YOU KNOW HOW IMPORTANT IT IS TO HAVE A MOM WITH THREE CHILDREN WITH THIS. THANK YOU FOR TALKING ABOUT THIS AND RAISING AWARENESS FOR OUR VIEWERS. THERE’S AN EVENT TONIGHT AT PAMELA’S IN SQUIRREL HILL TUNNEL. THE DINNER STARTS AT 5:00 TONIGHT AT PAMELA’S DINE THEY ARE AND THE MOVIE STARTS AT 7:00 AT THE JEWISH COMMUNITY CENTER. IT IS FREE.

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