JMTho

I'm sorry... I've been reading posts for a few months, but hadn't seen this suggested; didn't mean to duplicate; please forgive the newbie. I guess I was just very excited to possibly have a way to treat my oldest without having to battle for a long-term prescription for azithromycin, which is the only antibiotic which has proven effective for our youngest. The study states: "As a first line systemic treatment in adolescence most authors recommend the use of systemic antibiotics, including tetracyclines, doxycycline, minocycline, limecycline and erythromycin.[5,6] Recently, azithromycin has been added to this list.[9,17]" , so it could reasonably be considered/requested as the first antibiotic to be used. (I will be taking the study for back-up to our derm appt.) As for the dose, the amount used in the study is lower than the PANDAS dosage most are using. It just seems like there are so many battles to get treatment for these kiddos; if there is any way to try something within another appropriate diagnostic protocol, it might be worthwhile. JT

Hi all, For those of you seeking long-term azithromycin for older kids, this is one way to try to approach it with your MD/Dermatologist without insisting on the PANDAS diagnosis. My oldest son (12) is already taking chronic antibiotics for acne vulgaris (tried doxycycline and now Bactrim- not working). We are looking to make a switch anyway and came across several studies which support a change to azithromycin: http://www.medscape.com/viewarticle/566940_1 Our youngest son (10) appears to have PANDAS vs. SC (after 3 years we are just now stumbling upon this possible diagnosis- after being told he was likely bipolar 1 year ago; new diagnosis of ADHD this fall.) We will be seeking long-term antibiotics for him. (honestly, would prefer the diagnosis of SC, if possible, as the protocol and standard of care is so well established; insurance is much more likely to cover prophylactic antibiotics under this diagnosis) In speaking with the neurologist about our youngest, we now realize that our oldest had an episode around age 5 (7 years ago) with documented strep, mesenteric lymphadenitis ("strep in the gut"- ie. swollen lymph nodes often misdiagnosed as appendicitis- as often same presentation) and behavioral changes. He continues to exhibit hyper-focus and cognitive inflexibility, but all other symptoms are long-gone. Given that he will not likely test positive for strep at this time, we will seek this antibiotic change just to cover all bases. I don't recommend dishonesty, but if you are treating or considering treatment for acne already, this would be a creative solution to address 2 issues with one antibiotic. Best wishes as we all navigate troubled waters... JT