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 fact is that kids can have ongoing issues for a long time before getting the correct PANDAS/PANS diagnosis and appropriate treatment. Maybe it did happen suddenly with a plethora of symptoms that came and went and came and went, but nobody knew it was PANDAS/PANS when it happened. Families may go from doctor to doctor trying to figure out what is happening to their child with long waits in between specialist appointments. It can take years sometimes before the right doctor finally figures out the equation that OCD + anxiety + bedwetting + separation anxiety + school refusal + insomnia + ADHD + sensory issues + math decline + handwriting problems + more = PANDAS.
And I understand being hesitant to treat a new condition you’ve never treated before. There are definitely several professional resources that can guide doctors when it comes to PANDAS/PANS. PANDAS Physicians Network is designed especially for doctors. Moleculera Labs has a great new Physician’s Resource Center. They could watch the documentary My Kid Is Not Crazy and see PANDAS/PANS experts discussing the condition. There are also several books and articles that give great info for any doctor willing to learn about PANDAS/PANS.
This particular blog was inspired after reading in a support group about a doctor looking at the list of symptoms and a timeline that seemingly fit the PANDAS criteria. But then he said it was over-diagnosed and therefore NOT PANDAS. He told the Mom that it’s Tourette’s (because he treats Tourette’s?)…gave her a common Tourette’s drug to try for the kid…said to come back in three months. Ummm…huh? And this blog was also influenced by my own experiences and other stories I have heard. It boggles the mind as to why a doctor would say IT’S NOT PANDAS versus even considering the possibility.
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.)
IT’S NOT PANDAS because I don’t treat PANDAS. It’s not PANDAS because the symptoms don’t fit or because you don’t treat PANDAS? I treat tic disorders. It’s a tic disorder. Is it a tic disorder because that’s what you treat or because it is definitely a tic disorder. Or might it be PANDAS since there are so many symptoms, including tics? It’s NOT PANDAS! I don’t treat PANDAS. None of my patients have PANDAS. I treat tic disorders, and I have several patients with tic disorders. Here…give your kid this medicine and see me in three months. It should help or he might outgrow the tic disorder. How will I know if he outgrows it? It will stop. Doesn’t PANDAS wax and wane? IT’S NOT PANDAS!
IT’S NOT PANDAS because PANDAS is VERY controversial. Why is it controversial? Because some doctors say it doesn’t exist. Do you think it exists? I have read a little about it. I guess it could exist, but it’s very controversial. Everything I’ve ever read about PANDAS says it is controversial. Okay. Could my kid have PANDAS even if it is controversial? Yes…but I’m not comfortable with diagnosing something so controversial. I’ve never diagnosed or treated a PANDAS patient before. But my child might have PANDAS? Yes. Maybe. I don’t know. PANDAS is controversial. What should I do? Well, I’m not going to diagnose it because I’m not comfortable with saying it’s PANDAS because it’s controversial. And I’m not going to treat it. Okay…so you’re saying PANDAS is controversial? Yes. But my child might have PANDAS? Yes. But you won’t diagnose or treat my child because she might have PANDAS and PANDAS is controversial and you are not comfortable with it? Yes. There’s not even a medical code for PANDAS for diagnosis or billing. I’m not even allowed to diagnose PANDAS because of that! What should I do? Well, if it was my child, I would take her to a doctor to see if it might be PANDAS and get them to try antibiotics. That’s what I did! I brought her to you because you are her doctor! Oh…not me. PANDAS is too controversial for me. I’ve never diagnosed anybody with PANDAS. There was another patient who might have had PANDAS, but they left my practice and I’m not sure what happened to that child. Can we just try antibiotics to see if it helps the symptoms? I can’t prescribe antibiotics if she doesn’t need them because of the risk of antibiotic resistance. Well, what should I do if we are thinking it IS PANDAS? I’m not saying it IS PANDAS! I don’t know. PANDAS is soooo controversial! What should I do then? Here, I can give you a referral for a pediatric psychiatrist or a neurologist. It might take about three months or longer for you to get an appointment, so call right away. Maybe one of those doctors will have experience with PANDAS. Can’t you do anything today? Like I told you before, my child isn’t sleeping at night. She won’t go to school and can’t do her work. She will only wear one shirt and one pair of pants. She has those things that look like tics that I showed you. She’s so afraid of bugs that she won’t go outside. I had to carry her to the car to get her here today. All she does is watch the same cartoon all day long, and it’s a little young for her. She’s barely eating anything. I can’t get her to take a bath. She had strep a few months ago before this started. Could she have strep right now? Oh. Does she have a fever or sore throat? No. Then it’s not a strep infection. She looks fine to me today. IT’S NOT PANDAS! Let me give you this psychiatric referral. She probably needs SSRIs for all of her anxiety. SSRI’s? She’s eight. It really sounds like she’s very anxious. Call that psychiatrist and get an appointment. This is your child’s health. And give this sheet to them at the window before you leave so we can bill you. Good luck!
IT’S NOT not PANDAS because PANDAS is over-diagnosed. I thought PANDAS was a clinical diagnosis. That means it is a diagnosis of exclusion, right? Yes. We look for other things it could be. But couldn’t it sometimes be PANDAS? PANDAS is over-diagnosed. Too many kids are getting that diagnosis these days. From what I can tell from people online, it’s pretty difficult to get a PANDAS diagnosis. Doctors only call it PANDAS if they don’t know what it is. Then what is wrong with my kid? I think it’s a tic disorder. You THINK it’s a tic disorder? But what about the OCD and anxiety and ADHD symptoms that also started. And the trouble sleeping? The rest of the behavior stuff? That’s all probably part of the tic disorder. We’ll try something and see if it works. What if it doesn’t work? Then we’ll look for something else But try this first. So you don’t know it’s a tic disorder for sure? I know IT’S NOT PANDAS. Come back and see me in three months. What if it is PANDAS and we don’t treat it for three months? Won’t everything just get worse? What if he needs IVIG? IVIG is very expensive. Insurance won’t cover it. My child is also refusing to go to school. Maybe check into homebound services. But my husband and I both work full-time, and he’s in first grade. Try this medicine and make the follow up appointment. See you in three months. But IT’S NOT PANDAS!
Whew! It is so frustrating to hear about these appointments and to have experienced them myself. Have another good one? Write to me, and maybe there will be a Part Two to this blog. I’m sure there are more scenarios we could discuss. You can also check out this similarly-themed past PANDAS Sucks blog called “Doctors Say The Most Ridiculous Things.”
And certainly, as PANDAS/PANS Awareness grows, there are some parents that DO get quick diagnoses for their children and appropriate help from the beginning. For that speediness, I’m truly grateful. It should be that ALL parents and kids dealing with PANDAS/PANS get timely treatment. These are children with growing brains that are inflamed!!! We ARE getting there, but we’ll never feel like we’re getting there fast enough. Sigh
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Sarah Jane Alleman is a PANDAS Mom to her awesome son, Jesse. She spends much of her time on Facebook, making to-do lists, and listening to music, especially Depeche Mode. She drinks a lot of coffee, likes a good red wine, and has been known to hide chocolate in her pantry. Sarah really thinks PANDAS Sucks (the autoimmune disorder, NOT the bears!). PANDAS Sucks exists to tell the collective story about PANDAS/PANS. Sarah wants to empower other PANDAS Parents and let them know they’re not alone. She is also the Director of Kentucky PANDAS/PANS Support, which strives for more awareness, support, and understanding of PANDAS/PANS. Sarah was a Parent Contributor to the book “PANDAS and PANS in School Settings” and a volunteer and technical adviser for the PANDAS/PANS documentary “My Kid Is Not Crazy.” Find PANDAS Sucks on Facebook, Instagram, Twitter, and Pinterest.
Note: Please do not ask for doctor referrals or specific medical advice. This blog/web site is for info and support purposes only. I’m not a doctor.