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Posted

Hi Everyone,

 

We were on a regimen of Azith 2X week for many months. We had a few hiccups along the way and would increase to daily dosing during those events. Everything was going very well. Last month we took my son off antibiotics completely. He did very well for a month but last week - boom. His anxiety and compulsions were way up, math skills way down and he was a general mess. So we have restarted him on Zithromax. It's day three. His compulsions are actually better but he is generally worse--- now acting like a 2 year old (he's 10). High pitched squeaky whiny voice; trouble with school work and processing...phobia's increasing... anger. I don't know if this is PANS worsening or herx or what? I assume we just stay the course and hope for the best? In the past he's tested negative for everything except strep. What would you do?

Posted

Hi Everyone,

 

We were on a regimen of Azith 2X week for many months. We had a few hiccups along the way and would increase to daily dosing during those events. Everything was going very well. Last month we took my son off antibiotics completely. He did very well for a month but last week - boom. His anxiety and compulsions were way up, math skills way down and he was a general mess. So we have restarted him on Zithromax. It's day three. His compulsions are actually better but he is generally worse--- now acting like a 2 year old (he's 10). High pitched squeaky whiny voice; trouble with school work and processing...phobia's increasing... anger. I don't know if this is PANS worsening or herx or what? I assume we just stay the course and hope for the best? In the past he's tested negative for everything except strep. What would you do?

Once the auto-immune reaction kicks in, just getting rid of the infection doesn't stop that. The auto-antibodies and inflammation have to be reduced. I'd give ibuprofen and prednisone.

Posted

Has he ever been on Augmentin? There have been times that we add augmentin in with the zithromax for a few weeks, then stop the augmentin and continue along witht he zithromax. It could be herxing, but I would be suspicious that off of antibiotics he has contracted strep. You could culture him, but yo may get a false negative. Does adding ibuprofen, 2-3x/day help him at all?

 

Colleen

Posted

i have not read your other posts.

and i'm not sure how often it is mentioned...

but make sure the zithe is white.

there weird thing for my son...(back during times of full remission, when thing were very clear cut)..

ds would seem better tic wise within 24hrs, untill full remission w/i 2-4 weeks.

however, w/i the same 24 hours, untill i stopped the zith, it seemed as though someone had let 3 trapiez artists into my house,(he was the only kid during the first few onsets),running, spring boarding off of anything, upsidedown, litterally bouncing off the wall. i would notice w/i day of stopping the zith, though a couple tics day might occur till they stopped, the circus act stopped w/i about 2 days.

after some research i realized the dye was effecting him. (the dyes seem to be worse when in liquid form..i guess they hit the system faster/)

note that when ds is not in episode, i see no correlation with any food items. i do know better and as a house we do zero artificial, colors, sweetners, and are about 50% orgainic $$$$$$$. i think once the barrier is closed it cant effect his brain or so much less. but again i know better now, in general, and i try to do better.

Posted

Thank you everyone. I've added motrin for now and will see what happens.

 

I did not re-test him for strep as I wasn't sure why I should. I just assumed he'd been exposed again and was flaring which is why i restarted him. I also know that the zith will help the infection in time. But it is the anti- inflammatory property (also from zith) that I was hoping would help him more immediately. Instead, he got worse.

 

The pill is white. My son does react to food colorings. Good thought.

 

I may consider prednisone if it continues-- or adding a second agent. Hopefully the motrin will help until we can get a good build up of Zith in his system.

 

Thanks everyone for your replies!!

Posted

Hi. We are also from MA. We travel to CT to see Dr. B. He is great and very knowledgable. He treats aggressively, which I like.

Has you son ever been checked for other infections like Lyme, EBV, mycoplasma or other Lyme co-infections? This would be worth looking into. I'm no expert on Lyme, but am trying to research it a little as my DD5 came back positive for ehrlichiosis and suspicious for Lyme. But from what I have read, Lyme can come and go in cycles. Which you said your DS seems to have symptoms about every 2 weeks.

 

Where in MA are you? I go to a PANDAS parents support meeting in the south shore if you would like any details.

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