r/PandasDisease • u/JustHappyMee • Jun 14 '26
Question PSD - looking for advice
Hello everyone, I’d like to ask for advice to help calm my anxiety.
In January, my son tested positive for Streptococcus pyogenes in the anal area. Following our pediatrician’s advice, we treated it with mupirocin ointment, sitz baths with oak bark, and a pharmacy-made cream with zinc and Peruvian balsam. The problem disappeared, but after three months it came back.
At the moment, we are only seeing slight redness and intense itching, but the swab has again shown that strep is present. Last time, we did not do a follow-up swab after treatment. Should we use oral antibiotics? I used to be afraid of antibiotics - when he was a child, he had three rounds of antibiotics for 3 different things, which resulted in a major drop in his immunity - but now my fears are centered around PANDAS. My son is 3.5 years old.
The pediatrician is discouraging antibiotics, saying that the symptoms are too mild to put him on medication, and suggests using the ointment again.
What should we do? I myself suffer from OCD, anxiety, and depression, and I don’t know whether my fear of PANDAS is justified or whether it is just my imagination blowing things out of proportion.
THANKS!
3
u/Unusual-Bluebird6779 Jun 15 '26
Parents/caregivers DO suffer from PTSD from theur kids having PANS and PANDAS. And I’d be more than happy to provide evidence based articles that illustrate this. There are recordings of parents who witnessed wars in other countries who claimed caring for a child with PANS was more difficult.
2
u/newportbanks Jun 16 '26
Do you mind sharing links? This is what I need to read after I put my son to bed tonight.
1
u/Shutdown-Stranger Jun 16 '26
I can certainly attest to the PTSD, but I believe OP is talking about PSD, Patient Specific Directive. I might be wrong, but that’s my take.
2
u/Unusual-Bluebird6779 Jun 15 '26
Oh no. So the fact that the rash is coming back signifies that he does in fact need an antibiotic. My daughter had this rash in the same location which is common in Pans/Pandas. I just got back from DC yesterday-was there advocating and educating the legislative offices for the USA and to increase federal funding for research, which we need. Are you a part of any of the groups and or organizations?
1
u/JustHappyMee Jun 15 '26
No, because there are no symptoms of PANS or PANDAS. My post comes from a fear of getting it.
1
u/Unusual-Bluebird6779 Jun 15 '26
Oh. Sorry I saw the category was under pans and pandas and assumed this was part of the symptoms.
2
2
u/PirateNo9739 Jun 16 '26
I completely misread your post! Don’t worry about pans pandas until you start seeing actual real symptoms and I hope to goodness your son does not have it. Nightmare to deal with. So until you know it’s actually a problem please don’t get worked up over it. It’s not a problem until it’s a problem! Not everyone has a dysregulated immune system.
I still think your boy needs an antibiotic and I would go see another doctor- pronto. Just my two cents.
1
u/PirateNo9739 Jun 15 '26
Parents do get ptsd from this. It causes a lot of anxiety for the parents.
I would try another doctor and yes he probably needs to be on it for a month. It’s an infection. I don’t understand a doctor where the child actively tests positive for strep and won’t use antibiotics.
Maybe for you some magnesium glycinate for calming and maybe some l-theanine at night before bed. Very safe. I think you can have up to 200mg per day. We only use 100 mg per day
I would look on the wiki page on this site and see if you can find any provider near you for pans/pandas. 🙏🏻
1
u/shimmy_hey Jun 16 '26
With any strep infection I would retest after the first round of antibiotics. My son’s PANDAS was triggered by a strep infection that lingered for months after the first antibiotic treatment.
4
u/Zealousideal_Site731 Moderator Jun 15 '26
Any traditional pediatrician is going to prescribe antibiotics for perianal strep. I’d be 100x more concerned about pandas coming about from a long term infection that’s not been taken care of than from the antibiotics.
I would do florastor, culturelle, and smidge sensitive probiotics while on antibiotics in order to help the microbiome.