To all of the non-believers...

[airial95]

I don't get how there are really people out there who don't believe there is such a thing as PANDAS. Our Dr. took our son off of his daily dose of azithromycin last week as a trial to see if it was really needed for suppression. It was a DISASTER!!! By Thursday, they had to completely remove him from his class at day care becase he was so violent. On Friday, we were back in the Dr and back on our azith. It's now Tuesday, and hello - almost normal kid again!! We're still having some spatial anxieties and other anxious moments - but if our previous experience means anything, those will also subside in a couple more days. But needless to say, he's no longer channeling the devil.

 

For anyone who doesn't think that PANDAS is real or that long term abx will help - they can have my 2 1/2 year old for a sleep over a few days after he stops taking his abx. That will make a believer out of them!!!

[MomWithOCDSon]

I don't get how there are really people out there who don't believe there is such a thing as PANDAS. Our Dr. took our son off of his daily dose of azithromycin last week as a trial to see if it was really needed for suppression. It was a DISASTER!!! By Thursday, they had to completely remove him from his class at day care becase he was so violent. On Friday, we were back in the Dr and back on our azith. It's now Tuesday, and hello - almost normal kid again!! We're still having some spatial anxieties and other anxious moments - but if our previous experience means anything, those will also subside in a couple more days. But needless to say, he's no longer channeling the devil.

 

For anyone who doesn't think that PANDAS is real or that long term abx will help - they can have my 2 1/2 year old for a sleep over a few days after he stops taking his abx. That will make a believer out of them!!!

 

Can I give our pediatrician your phone number so she can set up a "play date"?!

[airial95]

Absolutely!! I'm offering him up for 24 - 72 hour abx free visits for all non-believers!!

 

What's hysterical - is he was so bad on Thursday, day care started looking for other kids in his class who may be acting sick, since we've all noticed a spike in symptoms when he's exposed to strep. (We didn't tell them he was off abx b/c we wanted them to be completely objective in how they logged him daily.) When I told the director on Friday that we were off to the Dr and he'd been off his abx - it was like a light went off above her head - that's why he'd been so horrible.

 

I can't tell you how thankful we are that our pediatrician believes in long term abx for treatment and we don't have to fight that battle.

[norcalmom]

Was it "just" behavioral or did you have any other symptoms? tics, ocd, nightmares, bedwetting?

[airial95]

Was it "just" behavioral or did you have any other symptoms? tics, ocd, nightmares, bedwetting?

 

 

He's only 2 1/2, so we really couldn't count bedwetting as a symptom, but he was magically potty trained instantly since he went to the potty constatly - turned out to be the frequent urination thing. Ironically, when on the abx, he's been more age appropriate with his potty habits - more accidents when he's distracted and playing.

 

It was mostly behavioral - he hasn't had any tics. He turned very violent, very suddenly one day, and it just escalated from there. We did notice that while he's an excellent sleeper, he would sleep 11 - 12 hours a night (no nightmares, snoring or restlessnes) and nap for 2-3 hours a day, he still always looked physically exhausted - which led our pediatrician to believe that there must be some sleep disturbances interfering with him getting to REM sleep. He also drastically regressed verbally and had some motor skill regression - ie - couldn't /wouldn't use silverware where there wasn't a problem before.

 

His main symptoms were ODD, OCD and ADHD. Once he started the abx and the ODD decreased significantly, we were able to also see more clearly that many of the rages and tantrums were a result of the OCD.

[Stephanie2]

My 2.5 yo does the same thing when off abx. I recently took him off b/c of an all-body yeast rash. 5 days later I had to put him back on b/c no one could stand him anymore!!

 

Stephanie

I don't get how there are really people out there who don't believe there is such a thing as PANDAS. Our Dr. took our son off of his daily dose of azithromycin last week as a trial to see if it was really needed for suppression. It was a DISASTER!!! By Thursday, they had to completely remove him from his class at day care becase he was so violent. On Friday, we were back in the Dr and back on our azith. It's now Tuesday, and hello - almost normal kid again!! We're still having some spatial anxieties and other anxious moments - but if our previous experience means anything, those will also subside in a couple more days. But needless to say, he's no longer channeling the devil.

 

For anyone who doesn't think that PANDAS is real or that long term abx will help - they can have my 2 1/2 year old for a sleep over a few days after he stops taking his abx. That will make a believer out of them!!!

[airial95]

We just did a "week off" to see if he still needed it for suppression, since he's been doing so well. WE DID!! By Thursday he was a mess. The teachers at school were looking around to see if any of the other kids were sick, because he always reacts when exposed.

 

He was back on abx by Friday. We thought for sure that it was taking him off the abx that caused the problem. Unfortunately, I was notified today by a parent who knows about our son that her son had strep last week and started his abx on Friday. So his flare up coincided exactly with the same timeline as his other exposures! So now we don't know if it was coming off the abx or the exposure that made things worse last week. UGGGGGH!!! Fortunately, our dr did a throat culture that came back neg and put him back on the abx anyway - we're almost back to where we were before our failed experiment.