Coming off Antibiotics

[Santi]

I put my son on abx and immediately we saw an improvement in behaviors. He was on it for 14 days on a trial basis. He stopped taking abx 3 days ago. Since then his tics seem to be getting worse and he got angry tonight and threw a chair and broke his bedroom window.

 

Is this a coincidence or is it possible that few behaviors have returned because we stopped the abx to soon? How soon do behaviors generally return? Is it only when one catches strep? Andrea

[peglem]

Back when we were treating strep episodically, 3 days off antibiotics was enough time for the behaviors to come back full force and when we'd go back in for a strep test- even just 3 days off abx, my daughter would test positive for strep. It took only 3 days after most abx, but 5 days with zithromax for the strep to return. My daughter is a carrier so I think we were not really getting rid of the strep in the 1st place.

[Santi]

Back when we were treating strep episodically, 3 days off antibiotics was enough time for the behaviors to come back full force and when we'd go back in for a strep test- even just 3 days off abx, my daughter would test positive for strep. It took only 3 days after most abx, but 5 days with zithromax for the strep to return. My daughter is a carrier so I think we were not really getting rid of the strep in the 1st place.

That blows my mind. Can't believe it happens so fast! Andrea

[momto2pandas]

It is always between day 3 and 4 that we see a reprise of symptoms. Just when we are starting to get a handle on the infection, the course ends and it takes precisely 3-4 days for things to go south.

 

It's been so many times now, we plan around the cycle. Day 4 of the 5-day course of zith is the best - the kids are 100% in every way, and we go to Disneyland or do other special things to enjoy them. I almost feel like we're on some sort of visitation/custody schedule! Day 5 is equally good, except that by that time I'm getting depressed that it's the last day of the course. Day 6 (off) and Day 7 (off) continue to be good for them, but I'm get increasingly anxious and watchful. By Day 8 I'm on eggshells and trying to figure out how we're going to beg our next "fix". By Day 9, things are going south. The truth is that they never get THAT bad, just really snarky and irritable with a few tics, but 10 repetitions of this cycle has begun to make me depressed.

 

(We have a trip to the east coast planned for next month to get with Dr. B and hopefully end that depressing cycle once and for all.)

 

In the past, we would take the usual courses of antibiotics, get over the infections, and be good for several months. This time, we are experiencing the above, repeatedly. No ASO or Mycoplasma on titers, so I'm not sure what we're dealing with, but it gets better on abx, worse again 3.5 days off. Perhaps you are going through the same kind of thing.

 

Incidentally, their immune tests appear to be kind of helpful here and you might find it helpful to get these done as well. The very high lymphocyte subset numbers suggest that they are still fighting infections even after the antibiotics are done. And the ratios, apparently, are consistent with intracelluar infections. Their IgG, etc. numbers show that they have deficiencies, perhaps explaining why the infections don't go away. Their pediatrician and immunologist here aren't really sure how to treat the full pattern of their immune results, hence the trip out to see Dr. B.

 

 

 

I put my son on abx and immediately we saw an improvement in behaviors. He was on it for 14 days on a trial basis. He stopped taking abx 3 days ago. Since then his tics seem to be getting worse and he got angry tonight and threw a chair and broke his bedroom window.

 

Is this a coincidence or is it possible that few behaviors have returned because we stopped the abx to soon? How soon do behaviors generally return? Is it only when one catches strep? Andrea

[P_Mom]

Peglem....I am sure you have already done this...but, have the docs put your daughter on Clindamycin to eradicate the carrier state? Is she still a carrier?

[P_Mom]

MOMTO2PANDAS....will you have to go back again for treatment...or, did you set it up by phone first? (IVIG???) Just wondering if you will need to make two trips.

[momto2pandas]

I am guessing that we will need to make 2 trips, but that has yet to be determined. We won't have a phone consult first (I don't think he does that). Our insurance covers him if we actually go to his office, so the truth is that it's actually cheaper for us to go out than it would be to pay for two phone consults (maybe 3 - I might see him myself while I'm out there). I would also prefer that the kids actually be examined by someone who knows PANDAS-like illnesses, especially since the neuro symptoms are starting to bug me out (major word repetition [goes away on Advil!], numbness of hands and sometimes whole leg, etc.) and I want ds3's massive sinus congestion/adenoids and ds6's breathing problems checked out, etc. Also, we have loads of family and friends in the area that we are overdue to visit, not to mention business out there, so we're kind of looking forward to the trip.

 

The good news is that our pediatrician said that he would work with whatever Dr. B suggested. If Dr. B does want IVIG (which he told me on the phone that he probably would, based on their labs/infections) and the insurance approves it, and if Dr. B doesn't mandate that we go out there for it to be supervised directly by him, our pediatrician said that he would be happy to arrange it according to Dr. B's instructions at an infusion center that is part of his practice, and would be happy to oversee it. We do have 2 doctors out here who are very experienced with IVIG and are believers in PANDAS; they just don't feel experienced enough with PANDAS kids to design the treatment and don't want to make any mistakes.

 

 

MOMTO2PANDAS....will you have to go back again for treatment...or, did you set it up by phone first? (IVIG???) Just wondering if you will need to make two trips.

[peglem]

Peglem....I am sure you have already done this...but, have the docs put your daughter on Clindamycin to eradicate the carrier state? Is she still a carrier?

We have not been on clindamycin. Last december we did 10 days of rifampin/augmentin combo and since then have been on 500mg zith every other day (after a 5 straight day loading period). She has been steadily improving ever since. I don't know if she's still a carrier or not, or how one would test for that while on abx. Her pediatrician says that strep is so prevalent in the environment that we will not be able to eradicate strep from her because her deficient immune system is not able to fight it effectively. We are waiting and waiting and waiting on the immunologist for IVIG for the immune deficiency...I've called and left messages everyday for 2 weeks! But, I'm afraid the dose that the immuno wants to give, every 3 weeks (just under .5g/kg) will not be enough. We'll see how it goes.

 

She's supposed to go in for dental cleaning/checkup in April, which has me nervous. Exacerbation after dental procedure last Oct. 1st was pretty bad. This is only a checkup, so probably no problem. But, still....

[simplygina]

I put my son on abx and immediately we saw an improvement in behaviors. He was on it for 14 days on a trial basis. He stopped taking abx 3 days ago. Since then his tics seem to be getting worse and he got angry tonight and threw a chair and broke his bedroom window.

 

Is this a coincidence or is it possible that few behaviors have returned because we stopped the abx to soon? How soon do behaviors generally return? Is it only when one catches strep? Andrea

 

we ran out of biaxin and by day 2 he told me he could feel things sliding back down again. I definitely noticed an increase in irritability, ocd and tics. We've been back on for a day and a half and I've noticed an immediate improvement again. I don't think it is a coincidence at all!

[T_Mom]

We definitely saw an increase in symptoms when off the antibiotics--

Obsessing/anger/etc. We have had continuing success treating with full strength continual antibiotics for over a year now.

 

An initial month long prescription is what convinced us that this was helping.

[thereishope]

If you saw improvement and 3 weeks later you had that big a setback, you need to get back for another strep test and get back on antibiotics. Did he have a +strep test in the first place? Which antibiotic was he on?

 

Also, when a person goes off antibiotics, you should get a follow up strep test 3 weeks after finishing antibiotics.

 

Have all other family members been tested yet?

[T_Mom]

If you saw improvement and 3 weeks later you had that big a setback, you need to get back for another strep test and get back on antibiotics. Did he have a +strep test in the first place? Which antibiotic was he on?

 

Also, when a person goes off antibiotics, you should get a follow up strep test 3 weeks after finishing antibiotics.

 

Have all other family members been tested yet?

 

 

In our experience, our daughter has done well with on-going antibiotics, full strength long term (for over a year now.)

 

We believe it is the anti-inflammatory effects (essentially--no doubt more as well:) of the antibiotics-- I believe someone mentioned that Swedo thought this might be the reason antibiotics long term are "working" for Pandas. It has been a clear help to us.

[airial95]

Our son showed a resurgence of symptoms after about 2-3 days off azith. It took about 5-6 days back on to get him back to where he was prior to the script running out. We've been fortunate now that our ped hasn't let our script lapse since.

[jayjay]

I put my son on abx and immediately we saw an improvement in behaviors. He was on it for 14 days on a trial basis. He stopped taking abx 3 days ago. Since then his tics seem to be getting worse and he got angry tonight and threw a chair and broke his bedroom window.

 

Is this a coincidence or is it possible that few behaviors have returned because we stopped the abx to soon? How soon do behaviors generally return? Is it only when one catches strep? Andrea

My son has been on abx since January. He also did a 21 day steroid burst. At his appt. 2 weeks ago, his titers had come way down (almost normal) so the Dr. suggested we cut the abx in half. Within a week of the half dose the OCD started to return. Needless to say, we are back to full dose.

[Santi]

If you saw improvement and 3 weeks later you had that big a setback, you need to get back for another strep test and get back on antibiotics. Did he have a +strep test in the first place? Which antibiotic was he on?

 

Also, when a person goes off antibiotics, you should get a follow up strep test 3 weeks after finishing antibiotics.

 

Have all other family members been tested yet?

 

Hi Vicki,

 

No we have not tested the family but will do that (I assume this message is for me). I am waiting for Antibody test but I did find out my 7yr. old is hypothryroid. Andrea