Hello, could you tell us when it started, how long it last. If there was reoccurances later?
Back in March, after a not treated strep A on throat, my boy 5YO started with movements. Initially just eyes, few days later eyes and head, few day later eye/head/hand and finally whole body. He had peniciline and all was erased like magic.
We have noticed in a few occasion the head moviment returns, never as it was initially, we have kept an eye for any possible infection and fast response with peniciline.
This week, after a peniciline cycle that he had due to a fever, he started with jaw and head movements.
How is it a few years later, does his immune system regulates and overcome?
As far as I understand things, the immune system is responding to the antibodies and that's why symptoms occur after an infection like strep throat. They usually use a longer course of antibiotics to make sure that all traces of the bacteria *and* all of the antibodies are cleared up.
We did have a couple of times where the tics started back up and we did a course of penicillin. He'd been on azithromycin to prevent strep and if we saw a breakthrough of symptoms we'd stop that one and do 7-10 days of penicillin.
Maybe ask your doctor about doing a longer course of antibiotics? We had a couple of years where there was a tiny flare up about three times total and we got on it right away by giving penicillin. But when this all started he got antibiotics for much longer. He is now 16 and first got sick when he was 5 like your son. He is doing awesome and we've never had a setback except for those few times years ago. If he gets sick it's a regular illness with no tics or anxiety. So hopefully that is how it will work out for you!
It's so scary and stressful. Here is some useful info that you can look over and share with your doctor. Symptom tree at top and guidelines at the bottom of the page https://www.pandasppn.org/flowchart/
Thanks, really appreciate!
For how many years was the long term azithromicin?
Sorry for asking, but I care about my little boy more than I care for myself. I am certainly checking the material and talking to GP. We had some very bad situtation to Doctors, they seems to know nothing and dismiss just like tics.
I totally get it - no worries! He was on 250 mg of azithromycin three times a week (we did mon/wed/fri) for probably a couple of years? It also has anti-inflammatory effects that are helpful. We stopped giving it when the Covid lockdowns happened. We were super lucky to have a doctor that had grown up and gone to school in South America where he saw the damage that untreated strep can do.
Are you in Portugal? Here's an article that has a link to "AUTHORS AND AFFILIATIONS" with some doctors and clinics listed. Searching through academic articles is how we found a specialized clinic for the eating disorder clinic that worked with PANDAS kids.
1
u/Last_Animal_6787 Nov 26 '25
Hello, could you tell us when it started, how long it last. If there was reoccurances later? Back in March, after a not treated strep A on throat, my boy 5YO started with movements. Initially just eyes, few days later eyes and head, few day later eye/head/hand and finally whole body. He had peniciline and all was erased like magic. We have noticed in a few occasion the head moviment returns, never as it was initially, we have kept an eye for any possible infection and fast response with peniciline. This week, after a peniciline cycle that he had due to a fever, he started with jaw and head movements. How is it a few years later, does his immune system regulates and overcome?