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Posted

My almost 11 year old boy will be getting IVIG next week to treat his PANDAS. We went to Dr. K in Chicago, and he confirmed the diagnosis - and the wonderfully supportive doctors here in Madison as performing the treatment (saving us another trip to Chicago).

 

My question is what prophylactic antibiotic protocol should I advocate for?

 

Dr. K says it is up to the treating physician, but this is his first time doing this - so some guidance would be appreciated.

 

Thanks!

Posted

You could ask Dr. K what he recommends. Perhaps he will advise you as to what he recommends for his patients.

 

Augmentin and azithromax are the two the are used to treat pandas the most.

Posted

Actually, it's frequently Augmentin XR (1000 mg BID)... not just Augmentin) and Azithromax, is my understanding. Slight difference, but it may make a difference.

 

I'm really glad you are getting this taken care of at home. How lucky for you.

 

 

 

You could ask Dr. K what he recommends. Perhaps he will advise you as to what he recommends for his patients.

 

Augmentin and azithromax are the two the are used to treat pandas the most.

Posted

Augmentin is Dr K's first choice or at least it was in May. If there's allergy, then zithromax. DS7 was given treatment dose of 250mg Augmentin bid for a month post IVIG, then 250mg augmentin sid prophylactically for the next yr. The two other kids getting IVIG at the same time had penicillin allergy so they were given zithro. Don't know the dosing.

Posted

Rain-

 

I sent you a private message.

 

Ann

 

 

[quote name='Rain' timestamp='1313154912' post='118808']

My almost 11 year old boy will be getting IVIG next week to treat his PANDAS. We went to Dr. K in Chicago, and he confirmed the diagnosis - and the wonderfully supportive doctors here in Madison as performing the treatment (saving us another trip to Chicago).

 

My question is what prophylactic antibiotic protocol should I advocate for?

 

Dr. K says it is up to the treating physician, but this is his first time doing this - so some guidance would be appreciated.

 

Thanks!

Posted

OK - this is my third try replying. If I end up with three similar posts, just laugh at the newbie!

 

Anyhow, Dr. K declined to suggested a dosage - saying it is up to the treating physician. So, I reached out to Dr. Leckman (who is doing the NIMH study). The study is using 500 mg of penicillin VK each day. I'm worried that won't be enough - especially with school around the corner. Any thoughts?

  • 2 months later...
Posted

Can you share who you are seeing in Madison? We are looking for a second opinion on the Lyme and PANDAS and are looking to head into WI. We are from WI and our entire family is there and we can't find much of anyone where we are in Iowa.

 

Thanks!!

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