Has anyone heard of PANDAS/PANS?

@MellieMel1971

@MellieMel1971

@MellieMel1971 Whoops! Tried to respond, above, and it apparently didn't work. I'm new here! :)

I heard of PANDAS years ago, but it was in the context of a pediatrician/friend telling me about this new-fangled diagnosis that was being implemented for very young children. (This was back around the early 2010s or so.) It was being received with some skepticism, as all new things are, but my understanding was that it was some sort of autoimmune disease that was triggered by an infection of strep throat(??) that would then cause later-childhood problems of a psychiatric nature.

I had never thought to "try on" this sort of possibility for myself. But your question does make me wonder. I know I had strep throat as a child, at least once! And, like you, I'm now in my 50s, looking back over my life and my decades-long struggle vs. depression. And I do wonder.

So because it’s new and it’s still not widely accepted there aren’t many long term studies about adults or pandas children as they grew into adults. I’m cautiously going down the rabbit hole. But I was specifically told my 6yo granddaughter has it now and I’m working on getting her in with a doctor to that specializes in it to have her screened. There’s apparently also a genetic component to it that makes Pandas kids/adults have a different reaction to strep and other bacteria.

I read about pandas/pans and apparently they are both autoimmune disorders that get triggered by infections (strep for pandas) and the flu and some other infections besides strep, for pans. But they both cause the immune system to attack healthy cells because of their similarity to the infectious cells. This then triggers such neuropsychiatric disorders as OCD, eating disorders, tics, anxiety , mood problems and more. If the the infection gets treated then the inflicted persons psychiatric disorders also go away. Since adults usually build up immune system to strep, pandas is rarely seen in adults. As a 6 year old child , I got very ill with Scarlet Fever. I have a damaged valve in my heart as a result of Scarlet Fever. I read that pandas can attack heart valves. There are not tests to see if a person has these autoimmune disorders, pandas/pans, but it would be good to be checked for infections if there is a sudden onset of psychiatric disorders to at least rule it out as the cause.

My son has it!!! He started acting out by throwing chairs and screaming. This wasn’t like him and I was scared to death. We couldn’t figure out what was wrong. I chatted with someone on a social media site and she said it sounded lined PANDAS. It led to us going to the ONE doctor in our state who believes in it. Although our sons strep culture came back fine, the doc said to go ahead and try the antibiotics. After that first dose, we had our “old” son back! It was amazing!! Now, He is on a low dose of daily antibiotics. He takes breaks in between rounds. When he gets belligerent, its time to go back on them. It’s scary how much difference 24 hours makes for him by taking that first dose of meds! Night and day! He was a totally different person when we finally figured out what was going on that very first time!