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  1. Just wanted to give you guys a heads up. My son was diagnosed with PANDAs in 2006 (Dr. Latimer) and has been successfully treated since then with various medications. Currently he is being successfully treated with clonidine (he is a sudden tic onset). In 2006 we were all covered under my employer health insurance. In 2008 I decided to stay home and my husband started a consulting business. At that time we secured our own health insurance -- going through the entire underwriting process with no problems -- but were paying $1400 a month. In 2009 we decided to figure out a cheaper way to i
  2. Hi. We are in Denver also. We moved here 2 years ago from DC where Dr. Latimer successfully diagnosed and treated our son for PANDAS. For us the beginning was so easy! Then we moved to Denver........ I have yet to find a doctor willing to acknowledge PANDAs out here. It has been frustrating. We lucked into a family practice physician who was willing to do blood work and basically give me any medication I thought my son needed. Then my son had a massive flareup and we were on the hunt for something more than our family physician could provide, including answers. Totally struck out. Met
  3. Hi Karen. I was the mom who originally posted about Dr. Latimer. I am so glad you had questions answered and are on a treatment path. Good luck! Morna (now in Colorado and missing Dr. Latimer)
  4. We are in Colorado. He did fine on Azith last spring that is why we went with it again a few weeks ago. Just didn't work at all. He was on it for 10 days (after 10 days of Amoxicillin) when we finally got to the neurologist. The ped. rheumatologist is a great idea.
  5. Hi Gibster, Hmmmm...well there are actually other reasons to treat strep carriers. Two that I can think of off hand are: 1) the strep carrier is making other family members sick (esp. if they have PANDAS, ARF, repeated strep infections) 2) the strep carrier has PANDAS (oops! forgot this doc is a "non-believer" ) The assumption that the carrier state is benign is starting to be questioned by some strep experts. The medical community doesn't really understand why some people are strep carriers and what that impact might have. Our dd who has PANDAS would problably be conside
  6. Sure, she said that strep could attack the cardiac valves (like rheumatic fever) or there could actually be "strep vegetation" hanging off the valve. Typically people with these issues have other symptoms like high fever -- but she just wants to cover the basis. She said that the only reason to treat a strep carrier with antibiotics is if the heart was involved also. He is going in next month for the echo.
  7. Just wanted to update you guys post neurologist appointment. Well, after getting a PANDAs diagnosis easily 2+ years ago we ran into a neurologist who said "I don't believe in PANDAs." Tad shocked, tad disheartened BUT she was really good at evaluating my son. She spent a lot of time with us going through the whole history and what has worked/hasn't worked in the past. In addition, after having him on azith, his symptoms were only getting worse. She she wants to take a new approach with clonidine, heart ultrasound (to rule out the strep there) and treating the tic/separation anxiety/att
  8. Thank you all! We switched him to Azith yesterday and have an appointment next Friday with a neurologist. So I guess we will go from there but I will definitely discuss the longer course of antibiotics. Do you usually keep them on just through strep season or is that all year. We have had the other 3 kids and ourselves checked and no one seems to be a carrier. The only time any of the kids has actually had strep is on case of the baby with anal strep and then once my dd had actual strep throat but other than that we haven't gotten any positives in the family. Looking back -- I woul
  9. I just stumbled upon you guys and have been reading this forum since I found you -- with relief and with angst. My son was diagnosed with PANDAS by neurologist Dr. Elizabeth Latimer (Bethesda, MD) in the fall of 2006. During a trip abroad he woke up one morning shrugging his shoulders. After cutting all the tags out of his shirts, changing laundry detergent and telling him to knock it off (about 1000 times) we took him to our pediatrician. He said this was out of his league, did a throat culture (negative) and blood work then sent us on to Dr. Latimer. Based on his titers and her neuro
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