PANS microbial exposure: treatment advice?

[SAS]

I am looking for advice re: PANS and an exacerbation of PANS symptoms in my child. I had strep throat recently and although my son did not get the infection he developed some of the typical PANS symptoms and is clearly having a flare up.

 

When my son has a strep infection we know to treat with 4-6 weeks of antibiotics however we do not know what to do when he is exposed to strep but is not personally ill with the infection. Wondering what has worked for others? We have started him on a course of antibiotics and have noticed dramatic improvements although we do not know if we should do the full 4-6 weeks or stop after a 10 day course. We live in a rural area in Canada and took our son Florida to be assessed and diagnosed, local doctors do not know of PANS or how to treat. We were given a great report from the FL clinic but it did not indicate how to treat a microbial excacerbation. Any advice?

[Chemar]

Welcome to the forum SAS

 

I am just bumping your first post up so others here can reply

[LaurenK]

Ibuprofen around the clock for 4 days prevents a major downfall for me.. also large doses of daily probiotics have helped with re activity and IVIG.

[pr40]

or you can also give abx for exacerbations. abx also have anti-inflammatory properties.

if you cannot get abx, perhaps other anti-inflammtory measures can be taken in addition to ibuprofen as LaurenK suggests, namely diet and supplements.

[LaurenK]

Thorne Vitamin E is a huge help to me. There's actually a drug that's in clinical trials for tourettes that is based from vitamin E. I read about it not that long ago. I only take that and CoQ10 and I'm good.

[WorriedDADNMOM]

I would suggest trying to find an Integrative Pedi or DAN doc in your area??????

 

We have had great success with this route. Simple to understand, but hard to implement and costly. But don't let that scare you away though.

[JoyBop]

It seems to me that many pandas kids react to others who have strep even though they may not have it. One role of continued abx is to prevent future infections. I would imagine that when others have active infections around us that that would be the perfect time for prevention if not treatment of symptoms. I haven't been doing this long enough yet to advise and we are still on daily doses, but I would think a months worth of abx would be a good idea, and them try to slowly wean to see if your child remains stable. If not, continue. I'm sure every child is different. My two kiddos still have high pos titres 7 months after infection so its hard to tell where one started and another ended. Do you have a dr that would prescribe?

[SAS]

Thanks for all of your responses re: my post. Thought I would provide an update: Our family doctor returned from vacation and we were able to get the abx extended for an additional 4 weeks. I was also able to do a phone consult with the PANS specialist we saw for dx of PANS in Florida who noted if we were sure he was exposed to strep that we should give him abx for 4 weeks. My son is doing much better since being on the abx. We are going to wait and see how he does after this round of medication and reassess the need for long term abx as a prophylaxis to reduce future exposures. For now we have several refills for 4 weeks of antibiotics so we can fill it as needed without having to go back to the doctor if he gets sick again.