regression after stoppnig antibiotic

[Hayley]

For anyone who saw improvement on azithromycin (or I suppose another antibiotic), how long did it take after they stopped the antibiotic for symptoms to get worse? As some who read my earlier post may recall, the doctor has my dd on a five days on, five days off protocol with azithromycin. Last time she was "off" we didn't see a regression until the fifth day, but we also hadn't seen the level of improvement we saw after resuming for the second five day stint. She took her last dose Tuesday morning and this morning we saw regression in behavior. We are meeting with the neurologist shortly and are trying to get her to put her on constant azithromycin. I didn't initially think she'd fight us on it, but after she ignored my fax yesterday with this request, I'm a little concerned. I'm still going to push for it, but would be interested to know if others had such quick regression to confirm whether we are just imagining improvement or if really there is a relatinoship here. thanks!

[Dedee]

Oh yes, with my son you could have set your clock by it. He started showing symptoms 24hrs after stopping the antibiotics and at 48hrs all symptoms had returned. This happened over and over. It also happened in reverse order. When starting them back, he would start to improve after 24 hours and within 48 hrs most everything would clear. It was amazing. My daughter isn't as clear cut but she is positive for Myco p also and my oldest son was only a strep kid. That probably makes a difference. Don't stop till you get continuous antibiotics. Your instincts are right. If this doctor won't do it, go to another and another until you find one who is PANDAS savy and understands this illness. Best of luck.

 

Dedee

Edited August 23, 2012 by Dedee

[MomWithOCDSon]

We didn't use azith, we used Augmentin XR, but we, too, saw regression "like clockwork" whenever we tried abruptly ceasing the antibiotic. For us, it was Day 8 after the last dose. Always, every time. Like DeeDee said, we could set our clock by it.

 

Don't know why ours would be a wider time frame . . . if it was by virtue of the different medication or the age of the kid involved or what.

[Missmom]

Also in this cycle right now and calling my doctor today to try and get more abx. Just finished three weeks of augmentin and now day five after putting him back on prophylactic dose everything is coming back. Sore throat, tics, headache, etc..... So frustrated, just want to cry! Why can't my baby get well.... I know you all know what I am going through. I hate giving him all these meds all the time. Should I ask for an increased dose? Or a different abx? Or just longer term of what we are doing? What do the pandas experts usually do in this situation? So many questions and the doctor has not called me back yet.

[Kiera]

The 5 day on/off with azith is for kids with "normal" immune systems. Dr T says pandas kids need it continuously. And beth Maloney said on a recent podcast, when stopping abx in pandas kids, it should be done just like an SSRI, meaning, wean down slowly (only when in a sustained remission) and if symptoms return, then go back up on the abx. Never stop abruptly, as you never would an SSRI!

[MomWithOCDSon]

The 5 day on/off with azith is for kids with "normal" immune systems. Dr T says pandas kids need it continuously. And beth Maloney said on a recent podcast, when stopping abx in pandas kids, it should be done just like an SSRI, meaning, wean down slowly (only when in a sustained remission) and if symptoms return, then go back up on the abx. Never stop abruptly, as you never would an SSRI!

 

Interesting! Initially, we didn't know that, but we definitely had trouble getting our DS off until, finally after almost 2 years, we started weaning him off very slowly; it took us more than 3 months to go from full dose to no dose! But it seems to have worked.