It can be frustrating for parents to KNOW that there is something medically wrong with your child. Many end up researching everything themselves and find PANDAS as a possible answer. But sometimes doctors will not even say that it could be PANDAS. For whatever reason, many doctors might choose ignore PANDAS as a diagnostic option even when faced with what seems like a clear cut case. Sometimes they will say that since there’s no current strep infection…IT’S NOT PANDAS. Sometimes they will say since it wasn’t sudden onset…IT’S NOT PANDAS. Sometimes despite all of the published research they will say PANDAS does not exist…IT’S NOT PANDAS. Sometimes they say IT’S NOT PANDAS because they don’t treat it…IT’S NOT PANDAS. PANDAS is controversial…IT’S NOT PANDAS. Others will say that PANDAS is over-diagnosed…IT’S NOT PANDAS. Clearly, the logic doesn’t always compute here. It can be maddening for parents….
The following are bits and pieces of real and imagined conversations between Parents who think their children might have PANDAS and Doctors (in bold type) who say IT’S NOT PANDAS!
IT’S NOT PANDAS because there’s no strep infection. How do you know it’s NOT PANDAS? My kid has just about every symptom of PANDAS from what I’ve been reading. The swab is negative. Will you run a culture and see if strep grows there? Yes, we automatically run a culture if the initial strep swab is negative. But I think you are in denial. We talked a few months ago about you taking him to a psychiatrist and getting him on SSRIs for all of his anxiety. Have you made that appointment? He is six years old. No. Make that call to the psychiatrist and get him on the SSRIs. What about antibiotics? Can we get antibiotics? We could see if they help. The swab was negative. It’s not strep. Are you really going to send me out of here with nothing? No meds? What if we do a blood test? We could check for strep titers. I read about those. Maybe he’s had a missed strep infection. Or there was the strep infection back in December before all the symptoms started. It’s September. It’s not the old strep infection. We can test titers. And I’ll give you the antibiotics because that won’t hurt anything. But he’s been having rages and a vocal tic and isn’t sleeping and is hyper like with ADHD. It’s like all the stuff we were dealing with after that other strep infection. He had what looked like a cold in August. He looks fine to me today. No fever. No sore throat. Here’s the paperwork for the bloodwork at the lab downstairs. ::A FEW DAYS PASS…THE DOCTOR CALLS:: So the strep culture grew, your child does have a current strep infection. Keep him on the antibiotics. So it IS PANDAS? That makes sense with all of his symptoms No. IT’S NOT PANDAS! The bloodwork is back, and the titers are not high enough for it to be PANDAS. Call the psychiatrist and get your child on SSRIs.
IT’S NOT PANDAS because it wasn’t abrupt onset. According to the criteria, it has to happen suddenly for it to be PANDAS. We have been dealing with these symptoms off and on for years. From what I’ve read, PANDAS will wax and wane. Did they come on suddenly after a strep infection? I really don’t know. She was about two years old when the issues started. We’ve had her in occupational therapy and checked for ADHD. She is five now. Two year olds can’t get strep. And per the criteria, a child has to be three years old to be considered for PANDAS. It’s definitely NOT PANDAS then. But she’s five now. Why can’t kids have strep infections when they are younger? They just can’t. Didn’t your child have a tonsillectomy? Yes. Her tonsils were taken out for chronic sinus infections and ear infections that started when she was about two. No tonsils means they can’t get strep. But she just had a strep throat infection a few weeks ago. We were just here for that and got antibiotics from the nurse practitioner. Then after a few days she had behavior problems so bad at school that I had to go get her. And she started wetting the bed at night. Sometimes she won’t eat because she’s afraid she will choke. She will also barely leave my side right now. Oh. Yes. She did have strep. But it’s NOT PANDAS because it wasn’t sudden onset when she was two. But she just had strep. Could it be this strep infections causing the issues? Could this strep throat have caused PANDAS? No because the issues have been ongoing. Not all of them. IT’S NOT PANDAS! What if it’s not strep doing it? Isn’t there something called PANS that can be triggered by other things? Maybe she has another infection. IT’S NOT PANS either!
IT’S NOT PANDAS because PANDAS does NOT exist! Then the doctor swiftly launches into a tirade about exactly why PANDAS doesn’t exist and how it’s always Tourette’s and never PANDAS and how terrible it is that any child is ever diagnosed and treated for PANDAS because it does NOT exist! The doctor complains about Moms using Google and thinking they are doctors when they are not. All in all the doctor spends 20 minutes berating a scared mom who waiting months for an appointment with this neurologist worried about her child’s health. The doctor belittles her for even mentioning the word PANDAS until she breaks down and starts crying right there in his office in front of her child. And the doctor doesn’t care and doesn’t offer any help except to offer a strong drug for the child’s tics and doesn’t give another referral. (This is a real story somebody told me. Actually at least two Moms told me about this doctor and how he made them cry during the visit when they even dared to mention PANDAS to him. I’m sure there’s more than two.)
[Much more at link]
Courtesy of a colleague
Courtesy of a colleague