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dd started with a nose itch late this summer that we really thought was an itchy nose but it recently turned into a face slap. Took her right in and asked for an antibiotic suspecting a missed strep. No throat test done but titers drawn and were negative. Have been suspecting PANDAS for a while but always treated active streps and she recovered from relatively mild symptoms. Doc agreed right away this time and gave us a 5 day strep dose zithro (7.5 ml 55 lbs) and by day 6 she was better about 90%. She backslid some and doc gave us a second dose and day one was better but now it is no longer better. I don't have much left. dd has obviously been trying to control the slapping but now it is a hit onto her jaw. Sometimes her teeth chatter with it. Our doc is smart and compassionate and wants to help but has no experience with this. She seems very hesitant to prescribe longer term higher dose antibiotics. I will pursue a consult asap - not exactly sure where to go for that - but what do I do in meantime? We think we should continue on this higher dose longer, like weeks, or another antibiotic, for weeks.

 

Do you think the zithro is no longer working? should I request a change like to augmentin or omnicef?

 

How do all of you get the antibiotics you need?

 

Cheri or anyone - anything natural I can do at home to help this abate?

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Just one thought, if you strongly suspect strep. My kids did zith for a few months and then had a breakthrough episode of impetigo (strep). I asked their immunologist about Augmentin, but since we knew it was strep, he didn't think that would be the best choice. We switched to penicillin, which I was very skeptical about, but I'll be darned if it didn't clear them up. I have a feeling that it may not be possible, long-term to always stay on one antibiotic. As new infections come up, we may have to tinker here and there to fight them.

 

That having been said, maybe it's herxing? When we first started penicillin, one of my kids got significantly worse PANDAS-wise for a couple of days (days 3 and 4 on pen) - even though he hadn't gotten PANDAS symptoms when he first got impetigo, but I held with it since his impetigo was getting so much better on it. Sure enough, he woke up on Day 5 announcing that he felt completely better both in his nose (where the impetigo was) and in his mind...and he was back to 100%.

 

Maybe you need to test for other infections? Others here have had good results with antibiotics once they figured out what organisms they were dealing with (i.e. strep, mycoplasma, lyme) and were prescribed accordingly.

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Just one thought, if you strongly suspect strep. My kids did zith for a few months and then had a breakthrough episode of impetigo (strep). I asked their immunologist about Augmentin, but since we knew it was strep, he didn't think that would be the best choice. We switched to penicillin, which I was very skeptical about, but I'll be darned if it didn't clear them up. I have a feeling that it may not be possible, long-term to always stay on one antibiotic. As new infections come up, we may have to tinker here and there to fight them.

 

That having been said, maybe it's herxing? When we first started penicillin, one of my kids got significantly worse PANDAS-wise for a couple of days (days 3 and 4 on pen) - even though he hadn't gotten PANDAS symptoms when he first got impetigo, but I held with it since his impetigo was getting so much better on it. Sure enough, he woke up on Day 5 announcing that he felt completely better both in his nose (where the impetigo was) and in his mind...and he was back to 100%.

 

Maybe you need to test for other infections? Others here have had good results with antibiotics once they figured out what organisms they were dealing with (i.e. strep, mycoplasma, lyme) and were prescribed accordingly.

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Just one thought, if you strongly suspect strep. My kids did zith for a few months and then had a breakthrough episode of impetigo (strep). I asked their immunologist about Augmentin, but since we knew it was strep, he didn't think that would be the best choice. We switched to penicillin, which I was very skeptical about, but I'll be darned if it didn't clear them up. I have a feeling that it may not be possible, long-term to always stay on one antibiotic. As new infections come up, we may have to tinker here and there to fight them.

 

That having been said, maybe it's herxing? When we first started penicillin, one of my kids got significantly worse PANDAS-wise for a couple of days (days 3 and 4 on pen) - even though he hadn't gotten PANDAS symptoms when he first got impetigo, but I held with it since his impetigo was getting so much better on it. Sure enough, he woke up on Day 5 announcing that he felt completely better both in his nose (where the impetigo was) and in his mind...and he was back to 100%.

 

Maybe you need to test for other infections? Others here have had good results with antibiotics once they figured out what organisms they were dealing with (i.e. strep, mycoplasma, lyme) and were prescribed accordingly.

 

 

 

Thanks momto2pandas, I do want to do all that testing. How do they test for impetigo in the nose? I agree that we want to find the right antibiotics and someone to prescribe them. She has had a nose thing now for a while, redness around the bottom. Has actually gotten worse and more stuffy while on the zithromax.

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I have a DS5 who started on Zithromax. Day 7 he was a brand new child. I'm not kidding. My mom, husband and I remember the day he woke...we refer to it as an "Epiphany". About 2-3 wks. later he bagan backslide and within days of that was in a bad place. Dr. T switched him to Augmentin, which my DD8 had switched to a few weeks prior. It helped to get him better. I actually believe Zithro got him even better so we've been on the fence about going back to Zith thinking he didn't backslide due to Zith but due to re-exposure. It's so hard to know. I would ask Dr. if he can swab her nose for strep, if he thinks it's possible to get a reading. I also agree with momto2Pandas that you should ask your dr. to do a blood test for every possible infectious agent. My motto is for such an ambiguous disorder, I want to have as many difinitive answers I get my hands on, example: strep titers, mycoP titers, Lyme, Cunningham's test, etc.

 

Best of luck!

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My ds5 was doing great on azith and all of a sudden started backsliding very badly. turns out he had a clostridia infection in his gut (from....drum roll ....chronic high-dose abx!). Switched him to augmentin and 3 days later he was doing great! Recently we switched him off of augmentin to vancomycin to really target clostridia and he is doing even better (still doing weekly azith for strep prevention).

 

Don't forget to test those gut bugs!!!

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