Antibiotics

[dcmom]

Now that the summer is here, I am thinking of trying to change things up a bit.

 

I have two daughters (age 7 and 10) with pandas. Pandas was triggered and diagnosed for them almost 2.5 years ago, at the time of a strep infection. Both have had two big exacerbations, along with some bumps in between. Both had pex, which immediately brought them to baseline.

 

They have both been on zithromax daily for almost two years. This spring, we were trying the lyme protocol of multi antibiotics at one time. Both got a strep infection in April, while on 2 abx each (one zith and rifampin, one zith and augmentin) at treatment level doses. We changed to clindamycin

 

Prior to pandas, they averaged a strep infection every 2 years approx- so I do not see as our odds have changed.

 

On top of this, one daughter (maybe both) seems to react to viruses- so antibiotics will not help us there.

 

I am really starting to wonder if the potential for damage and imbalance of daily antibiotics, is worth it. Should we stop the daily, and prophylactic use of antibiotics? Should we just treat the illness, and pandas, immediately and aggressively?

 

I am really thinking of taking a break from the antibiotics for the summer, to see where we stand. If symptoms remain stable- why not?

 

I am just starting to feel really uncomfortable with the daily meds-when I don't know if they are really doing anything.

 

I would love to hear thoughts...

 

Eileen

[SSS]

Hi, I have recently been thinking a lot about this, too.

For the last while, I honestly could not tell whether the Azithromycin was making a difference, or not.

I told our Dr. this yesterday, at our appt., and we both agreed if I can't tell, it is probably not.

And, to top it off, my dd6 had gut issues before we started pandas antibx., we have been working at it for a few years now, she has a good diet (proteins) given tons of quality probiotics. Recently I added a product called Intestimend which has reduced her gut inflammation.

But, the antibiotics are not helping our healing gut.

We are out of school, she is not signed up for children centered activities this summer.

However, our Dr. yesterday switched us to Cephalexin, 2x a day :-(. I am following his lead on this one, he wants to see if there is some strep in the body that is hiding out, we've never been on this one before.

I have a 3 month script, plan on doing it for 1 month, and we will see how the response is- it would be nice to go off of antibiotics after that, and wait until school starts to start something up again, since it will then be strep 'season' again.

It's a hard call. Obviously some find they can't go off because they lose ground. But I hear what you're saying.

[airial95]

We're currently off abx, for the second time since dx in Januray 2010 (exacerbation started in May 2009). We have ONLY done abx, and unfortunately, even on full and proph doses we managed to get strep multiple times anyway. (but our immune workups show everything is just fine!!)

 

We went off abx in December after being on consistenly since January (we tried to go off a couple of times before, bit it didn't last a few days each time, so I don't count those). Murphy wanted him off for at least 3 monhts to see how he did. We were off unitl mid February when he got strep again (2 wks before we hit the 3 month mark!) and was put on a 90 day dose of Cefdinir. We were at about 85-90% (dealing with residual OCD only - but it was more "habit" breaking in therapy than real OCD at that point - he's only 3, some of his OCD rituals just became the normal way of doing things!). We saw a very slow, gradual, but very real backslide during that time, and we were at around 75% when he caught strep again. Within a week on the abx he was back at that 85-90% again working wonderfully with this therapist. He did get 3 impetigo infections as well as strep hiding in his nasal cavity while were were on that 90 day dose of Cefdinir. We just finished that rx about 2 weeks ago, and while we are enrolled in 2 days a week of day care, we're still above water. We've definately backslid - but that last strep infection in the nasal cavity was only a few weeks ago...so we're thinking we're still fighting back from that.

 

Both our pediatrician and Dr. Murphy want to see if we can give the abx a rest for a while, and to see how long. I understand the logic of taking a break - but my husband curses them whenever we have even the smallest set back (dad doesn't always have the patience that mom does!!)

 

We're at the point where we can totally manage the disease with abx, and we're lucky we have a phenomenal pediatrician who believes and understands PANDAS (he's the one who gives us automatic 90 day rx when we get strep! He even gives my non-PANDAS daughter longer scripts when she gets strep to be safe). However, I'm starting to get frustrated with how often we're getting strep even on abx. Like I said, the blood work shows NO immune deficiencies, so we're getting ready to explore some other options.

 

Hope our experience helps a bit...

[peglem]

Those who got strep while on abx, was that by culture or just rapid?

[airial95]

In our case - both, depending on the circumstance. But if we were positive on rapid (which was more often the case) - we switched up doses/abx. We also got impetigo - which required a topical abx in addition to the oral.

[peglem]

We recently trialed off of our zith, at the request of the rheumy, since we also had a positive strep test while on it. The 1st 2 days off were fine...by the fourth day we saw a rapid downward spiral. By the 6th day, I'd had enough and put her back on. We're slowly coming back up from there. I don't know what the zith is doing for her, but something!

[dcmom]

Both girls were obviously sick; fatigued, sore throat, fever, general malaise. Our ped does a rapid and culture together, both were positive on rapid (one had been negative on both culture and rapid a few days earlier), so subsequent culture was not grown out.

 

SO- yes, if we see a downward spiral off abx- we will get RIGHT back on. But, if going off doesn't cause downward spiral, and being on doesn't prevent strep 100%- what exactly is the point?

 

So far, we have never had a chronic strep, or much of a chronic illness problem. They each had strep twice prior to pandas, strep at pandas initial episode (feb 2009, one age 8 one age 5), and both have had strep one time since.

 

My older daughter, almost 11, had always been so healthy. This year, however, she had 2 virus/flu type illnesses, one stomach bug, and strep. It seemed like a lot. Minus pandas, she would have missed 15 plus days of school.

 

Anyway, we are seeing a few new docs this summer, so I really want to think about this prior to those appts.

[airial95]

We recently trialed off of our zith, at the request of the rheumy, since we also had a positive strep test while on it. The 1st 2 days off were fine...by the fourth day we saw a rapid downward spiral. By the 6th day, I'd had enough and put her back on. We're slowly coming back up from there. I don't know what the zith is doing for her, but something!

 

 

That's what happened to us when we first tried last summer to go off - it never lasted more than 3-4 days. But we were still getting positive strep tests on both the Azith and Cefdinir.

[Dedee]

When my oldest son kept getting strep and we couldn't get rid of it, I finally just had his tonsils taken out. I know that is sort of contraversial, but he was getting worse with each infection and I was ready for something drastic. He hasnt had strep since. He is still on daily antibiotics and he will occasionally react when one of the other kids is really sick, but he hasn't had a major flare in four years. It works for some, but I know there are others that still have problems. Just my experience.

 

Dedee

[beeskneesmommy]

Deedee - curious - did you see an immediate change in the PANDAS symptoms after tonsillectomy? My son had one last Aug., which is in part what brought his acute episode fourth (because he had active Strep during the surgery and the ENT did not give him abx prior). My son's titers stayed very high well after the tonsillectomy, despite starting on Augmentin last Sept. His titers are finally down, as we started a new abx in Jan. 2011. It is my hope that he will be one of the lucky ones who shakes this after a tonsillectomy. However, he recently had a surge of PANDAS symptoms (despite low titers now) and we don't know what to make of it. Interestingly enough, we seem to have knocked those symptoms clear out with a typical 5 day run of Azith. on top of the Cefdinir. It's like night and day now, compared to last Sunday. I am wondering if you had some bumps in the road or if your kiddo just became asymptomatic during the recovery from the surgery...?

 

Thanks, Kath

[Dedee]

I would say he was about 70% recovered immediately after. The tics went away completely. There was still some residual OCD / anxiety that resolved over a few months. He stayed on antibiotics though. The surgeon said his tonsils were huge with big pits in them that probably had tons of bacteria in them. In regards to the titers, I wouldn't worry about that yet. We didn't have titers done prior to the surgery. We did them 5 months after when we were going to see a PANDAS specialist so we could convince my pediatrician that he needed to stay on antibiotics. His AntiDnase B was 2,700. My pediatrician couldnt believe it. That really made her a believer. His symptoms were much better though. I think when they are really sick like that and strep is the trigger, it takes a while for them to come down. I shudder to think what they had been. I am convinced that having his tonsils out was a good thing for him. I just don't think we could have ever cleared them of the strep. For kids who have strep hiding in other places, it wouldn't make much sense. I think you will see steady progressive improvement. I would stick with a full strength antibiotic for a while. Good luck to your son.

 

Dedee

[dcmom]

Mine both had T&A done- one pre pandas onset (due to sleep apnea), one because of pandas. I def do not regret it.

[michiganpandas]

I love that you are asking this....we opted to not put my daughter on antibiotics (diagnosed this March)...she has been slowly getting better.....we waited until she hit a 2 week mark of staying the same (almost better, but some anxiety) and then gave her a 5 day course of azitromycin...i didn't really see a difference (level of anxiety stayed the same)....she is still now the same (which is now 2 weeks after the 5 days of abx)......i guess if we would have started the abx right away i would have thought she was slowly getting better because of them (does that make sense?).....but, i do debate everyday if she should be on them because of the success of others on this forum. I do know that ANY time she complains of a sore throat we are putting her on them and I think next year we will put her on them around Feb-April because she gets sick EVERY March....i don't want to take a chance.

 

I also debate about getting the tonsils out.....i think we might go that route

[dcmom]

michigan pandas-

 

I don't regret having the tonsils out- but, my younger daughter had an exacerbation exactly one week later (IMHO- from the surgery).

 

What I would request it 2 weeks of abx prior, IV abx during, and 2 weeks of abx post surgery (clindamycin if possible).

 

We did zithromax before and after, did not help. We ended up with steroids/ pex....

[beeskneesmommy]

dcmom - yes, my son had been dx with PANDAS at age 2.5 and treated only for each Strep infection, then the PANDAS symptoms would go away until another Strep infection. We didn't know enough not to trust the docs and they said the tonsils had to come out d/t the frequent Strep. NOT the problem - we agreed. However, I was concerned about the surgery with active Strep, which he had at the time and when I asked for a preventative abx, the ENT said it was unnecessary. BIG mistake! Surgery was 8/16 and complete and major acute episode was 9/9. In retrospect, it is amazing that my son made it 3 weeks. He started to show signs that something was very wrong within 24 hours of the tonsillectomy. He also had pitted tonsils that were likely harboring Strep literally for years. We are very thankful for the abx, which he went on immediately and still hasn't come off of (1 x recently for 2.5 days and he started to have PANDAS symptoms again). I would absolutely insist upon having "sterilizing" protocol of abx prior to and post surgery if we were to do it again! Given the situation with my son, I am still hoping that the tonsillectomy, coupled with the recent low Strep titers, will do the trick for him.