Prophylactic antibiotics

[h202]

We just returned from an appointment with our specialist following son's (7) first flare. In brief:

- Son's first symptoms of pandas cropped up either last November (in earnest) but exploded in February.  On a scale of 1 to 10 (10 being the worst) relative to other pandas' kids as reported on this and other sites, i'd say he got as bad as a 5 or 6.  His symptoms were increased adhd, new anger and emotional liability, and some autistic qualities.   

- Two months after the explosion (but potentially 4-5 months after very first symptoms), he was diagnosed and treated with augmentin.  We saw positive changes at two weeks, and then by six weeks he was at 90%. Only remaining issue was lingering emotional liability (uncharacteristic moodiness, anxiety and irritability), which went away a few months later when we adjusted his adhd meds.  Son was on abx for 5.5 months total.  

- Seven weeks after dropping the abx, son had his first flare (late october). Symptoms were minor at first (1 out of 10 on the pandas scale). On day 10, he got uncharacteristically angry about a few things and was acting a bit autistic, so it was clear he was in a flare (3 out of 10 on the pandas scale for exactly one day - still not bad) and we started abx.  12 hours later he was back to 90%. Within 10 days he was back to 100%. Stayed on abx for the whole 20 day duration with no additional issues.   The whole flare lasted approximately 3 weeks (from 100% back to 100%), and it was -- in hindsight -- not difficult at all.   

- Son tested negative for strep several times this fall and no symptoms of strep. After the flare started, he did bloodwork with high dnase antibodies (850 with normal range 350). We don't have a baseline to compare against.  

- Just went to the specialist for what i thought was a routine follow up post-flare, and he wants to keep son on abx for 3 more months -- even though he is at 100%.  His theory is that the worst cases of pandas are those with increasing severity of flares that are less likely to respond to treatment, and so we should avoid flares at all costs. The fact that son only went seven weeks after stopping abx suggests that his immune system might not be sufficiently repaired to deal with future triggers, and we'd rather not test it out.  He couldn't say how long we'd be on abx, but we'll reassess in 3 months, but he could be on much longer than that even if he's symptom free for the next 3 months.  He said the abx will help avoid strep infections, but also may serve to bolster the immune system to protect against flares once we stop abx.  

I'm surprised they are recommending this because this practice has previously told me that they are not big on long term abx -- and they are well known on this forum and elsewhere as being very conservative on pandas treatment (following academic/research recommendations, and less on anecdote/experimental). Son went from having a moderately bad pandas onset that took 6-8 weeks to respond to abx, to having a flare that had almost immediate responsiveness to abx.  Everything i've read about prophylactic abx suggests it's reserved for the most severe cases, and that almost all pandas cases (i.e., not just the most severe) have a relapse-remitting course of flares. So the fact that son had a (minor) flare doesn't seem severe to me, but par for the course, right?  I know lots of people on this forum have kids who were on long term abx, but my read was that it was for kids who had severe pandas, never reached 100% while on treatment , and/or relapsed as soon as they stopped the abx.  

Just wondering what other people's understanding is of the proper use of long term abx, if the treatment protocol has changed, etc. Anyone have any thoughts?   

[MountainMom]

What your specialist said makes sense to me in light that my DS’s PANS symptoms got worse each year after onset. If we’d caught it earlier and begun prophylactic antibiotics, perhaps he wouldn’t have continued to get worse to the point where it doesn’t seem to respond seem to respond to antibiotics at all. It’s so hard because it seems like each kid is different, but if I could go back and begin antibiotics during his first flare- of course knowing what I know now- I would. And I’d keep him on them for a long time.

[NYCMom]

Not at all. Our kid was a mild case, caught early, but on abx for years. To this day I'm glad we followed that protocol for as long as we did. DS16 is 100% most of the time but still has lingering tics with very mild flares to this day. Nothing that bothers him or gets in his way, so we've educated him about what he can do in a flare (eat well, take probiotics and an advil) and now let him manage it.

[tk1234]

agreeing with NYCMom. My understanding from seriously educated warrior moms is that especially for the first year or two priority number one is protecting as much as possible against inflammation....so avoiding flares. Our 7 year old responded quickly too to medication after her big onset--I've kept her on now for an additional 1.5 years for this reason with the support of several of the specialists who are saying the same thing as your treater. will need to revisit the question at the 2.5 year mark. We do probiotics and  curcumin for inflammation. For what it's worth, know visible sign of GI distress so far as a result of antibiotics. This is a disease of such difficult choices to make as parents......as you well know.

your question is a great one. I hope these shared experiences help. Sending you all the best.

[JSL25]

We are two years into this awful disease and our specialist wants to put our daughter on Azitrhomycin until the end of the school year and then start again at the start of the next school year. We see good improvement when she takes an antibiotic, but I’m so scared to have her on it long-term. I worry about what it will do to her body now and for the future. How do other parents reconcile this?

[O_Bear]

Same worries, jsl. My son is on azythromax 250 daily and has been since May, with the exception of June, July and half of August. His innitial onset was the summer of 2017. He had two 10-day courses for active strep in thr fall, which was how long it took for his pediatrician to wonder if his sudden symptoms might be strep related.  From that point it was another 5 months to find and see g a PANDAS specialist (also a more conservative MD). He was given a 30-day course of antibiotics. Following lab tests that showed high strep and myco, he was put on longterm antibiotics. He will be retested in January, and if the levels are good, he will move to a prophylactic (I assume just a few days a week) until the end of the school year. If all is still well, we will attempt to go off in the summer.

Good luck.... these decisions are scary. 

[NYCMom]

re: long term effects of abx:

Our ped pointed us to the years of studies of long term prophylactic use in treating Syndenham's Chorea. I've never done the research into it myself (we trusted our ped) but he said there were no indications in the literature of long term negative effects and so he felt comfortable prepscribing prophylactics for his PANDAS patients.

Our personal experience is that DS16 had occassional stomach issues, possible from the abx, not sure, but nothing that was anywhere near as bad as his flares, and nothing that has persisted in the years since he's been off them. We still give him probiotics to this day, so maybe that has mitigated some of the possible issues.

[Dave401]

Jsl25 I was put on Azithromycin and I developed a stomach issue that I had no idea about that was keeping me in a flare. It’s probably ok but you have to watch out for that . I went over a year before I realized the Azithromycin was causing  digestive issues with no stomach symtoms but a bad flare. Your kid should be ok but it’s always possible.

[Gpookie]

My kids were mild cases.  We are on year 5 of abx. Just went to prophylactic dose (from treatment dose of 2 abx) last June.  Kids are doing great and have never missed a day of school for this.  Will be on abx until they are 21. They are 12 and 11.