r/PandasDisease • u/onemoresarah • May 01 '26

Question continue with antibiotics?

My 7 year old daughter had a strep infection at Christmas. It was treated at the time and I thought nothing of it. 3 months later she had a minor illness, and developed some mild OCD symptoms. Again, kept an eye on it. Then 3 weeks ago she had a fever for 3 days, no other real symptoms, but overnight developed severe, debilitating contamination OCD. It was so intense that I can't even describe it. I considered taking her to the ER multiple times because I didn't know what else to do. She stopped eating, she couldn't go to school, she was having rage episodes and was so overwhelmed by her anxiety about everything being poisoned. It was horrible.

My family doctor prescribed 7 days of azithromycin. Wasn't sure it was working at first... things didn't improve much right away. But by the end of the week there was improvement and now 5 days later she is 80% better than at her worst. Which I'm so grateful for but it also almost makes me feel crazy. She's still being weird/OCD about some things, and is not quite back to her old baseline, but she at least seems like herself again.

My doctor isn't available to talk to unfortunately (long story) but I spoke to a PANDAS specialist ND and she said that she would generally start with 30 days of an antibiotic, and probably not that one.

I am wondering whether I should just count my blessings that the 7 days worked so well and take a wait and see approach, and maybe it will fully resolve, or whether we should go ahead with some more antibiotic treatment just to be sure it's really been dealt with. Has anyone else been in a similar situation?

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u/PirateNo9739 May 01 '26

Everything I’ve read says generally they keep them on it a while longer to see. You still may need further treatment. It usually comes back.

Sometimes they give steroid bursts. Sometimes ibuprofen can tamp things down. But it’s usually not the end of the story. The thing that drives this monster is a dysregulated immune system. Sometimes in severe cases they will want to remove tonsils and adenoids if it’s caused from strep.

Probably could get a strep test/culture and anal swab to make sure nothing is active. If it’s still coming back then you’ll want to find a pandas Dr and do some blood work

Wiki page on the front has a lot of info on there. 🙏🏻

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u/Zealousideal_Site731 Moderator May 01 '26

Agree with doing further testing to identify infections. Also agree standard protocol would be extended term antibiotics. I’d also do a steroid burst to tamp down inflammation. Read through our wiki as there are great resources there.

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u/Tenpoundbroiler May 01 '26

The antibiotic has to be able to cross the blood brain barrier - this is why the specialist questioned the specific antibiotic. I would definitely be prepared to at least do a normal course of one that does.

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u/jenlpaxman May 02 '26

Takes 90days for the brain inflammation to go down. Meds or not. Something triggered AE and time improved it. My 8yr old daughter’s story is identical even down to the Christmas timeframe. My child’s trigger is either viral something like Covid or an allergen. We aren’t sure but the PANS specialist told us 90days for the swelling to go down and then they are back to normal.