MPatti

Thanks for the replies. I am in Fairfax County (near Centreville). Do you know of a pandas support group in this area?

Hi -- I am hoping to find a pandas-friendly pediatrician in Northern Virginia. Does anyone have any suggestions? Thanks!!

nicklemama - thank you so much for your reply. I am so sorry it has been such a long road for your son. It breaks my heart that we are all going through this and have to watch our children suffer with this.

Hi -- DS 5 had live flumist in January 2014 (along with mmr and chicken pox) and started exhibiting symptoms the next day. This is first known exacerbation. Diagnosed with PANDAS 3 weeks later. Meredith

3bmom - Thanks for the advice about anti-virals - I am going to have to ask about that. I assume there is no blood test for virals? jenann - Hi! I am so glad I am not alone in the way I have been thinking! Good luck with the taper - I hope all goes well! I am waiting on the results of that research as well. It is so scary that so many of us have similar experiences after the flumist - if I only knew then what I know now . . .

I am fairly new to this forum (I posted my intro previously) but will give a recap of how we got here – my 5 year old son had the MMR, chicken pox and flumist vaccines at his 5 year well visit on January 10, 2014 and the day after started exhibiting a motor tic. Shortly thereafter he started exhibiting some other symptoms but they were definitely mild (wet bed a couple of times, some weird crying bouts, restless legs). Was fortunate enough to see Dr. L almost 3 weeks after onset and diagnosed with Pandas (pediatrician ran some blood work and it showed a positive strep screen). He was put on Augmentin and given a steroid taper. Some symptoms got better (hard to tell because with the exception of the tic all symptoms were/are mild) and some no change so after 30 days on Augmentin he is now on clindamycin. Tic is just as bad as ever. I have done A LOT of internet research and have spent tons of time reading this forum (such a great resource!) and understand that especially for this initial pandas episode symptoms would likely improve over time even if he wasn’t on an antibiotic. So here is my question – how do I know the antibiotic is working and it is not just a case of the symptoms improving on their own over time? If the antibiotic is not working is this the equivalent of him being untreated? I would hate to put all of these high doses of antibiotics in his body unnecessarily, but I want to do everything I can to mitigate this. Dr. L has ordered a bunch of blood work to test for co-infections and we should have those results next week. Any advice would be greatly appreciated! Thanks for reading!

Thanks for the suggestions!

Hi -- I am looking for an LLMD in Northern Virginia (or DC/MD) for my 5 year old PANDAS son. Any recommendations? Thanks!! Meredith

Karen - thanks for replying! I really am so happy to hear your daughter is doing so well!!! We go back to see Dr. L in 2 weeks - I pray that I will see some improvement by then.

Karen - so happy to hear your daughter is doing so well! How long after the onset of symptoms did you receive treatment? jenann - thanks for the info about lyme - I will definitely do some research. I have removed ticks from my son before, but I have never noticed a bulls eye rash or an illness after removing a tick. So glad your son is improving so much! By the way, we also have a Boxer - best dog ever!!

Thanks, agnes26. Since he did not have a positive response to the steroids does that mean he may not have pandas?

Thanks again for the welcome and all of the responses to my post. It certainly gives me comfort to know that I am not alone, but at the same time brings me such sadness that our children have to suffer with this. To give an update - as I mentioned my son has not yet shown any improvement. In fact, beginning last night he has again started becoming very emotional - crying about things that normally would not upset him at all. I called Dr. L's office today and left a message - the receptionist called me back to let me know she had passed along my message and instructed me to stop the steroid after day 14. I am not sure what stopping the steroid might do?? I hope some improvement is in our near future. Thanks again to all of you - I really appreciate everyone's kindness and advice.

Thanks again for all of the feedback - I really appreciate it! I will talk to Dr. Latimer about changing his antibiotic. Is there anything else I should be doing right now? I feel so helpless doing nothing except constantly watching my son to see if there is any change in him. Are there other tests I should be pursuing right now? Anything else I should be doing? I want to be as proactive as possible.

Thanks for your reply. So glad to hear your son is doing so well - definitely gives me hope! How did you figure out that your son had multiple chronic infections? Blood tests through pediatrician or Dr. Latimer? Sorry for all the questions - all this is new to me and I just want to make sure I am doing everything I can for my son.

Thank you so much to everyone who has replied to my post and offered their advice/insight! I really appreciate it. If anyone else has anything else to add, I would love to hear it. Again, thanks.

Hi, I am hoping to get some advice/insight as I am new to this. My 5 year old son was diagnosed with PANDAS a week ago. To give some background - on January 10, 2014 he went for his 5 year well visit at the pediatrician - he was given the MMR, chicken pox vaccine and Flu Mist. The next day he started exhibiting a motor tic - constantly. I knew something wasn't right as he has never had any tics before. Two weeks later (January 24) we were seen by his pediatrician who ran a lot of different blood tests. Results came back the following week and I was told everything was normal except for the strep screen. Pediatrician offered antibiotics - which I started him on (Augmentin). After doing countless hours of Internet research, and learning more and more about Pandas, I wanted him to be seen by an expert in this. I was able to get him in to see Dr. Latimer in Bethesda, MD a week ago Friday. She diagnosed him with PANDAS and prescribed Augmentin (1200 mg/day for 30 days) and Orapred (20 mg a day for 7 days, 10 mg a day for 7 days and 10 mg every other day for a week). He has been on the Augmentin for 10 days (including days he took it as per the pediatrician's instructions) and the Orapred for 8 days. I am seeing absolutely no improvement in him. He tics at least 5 times per minute. I am scared the medicine is not ever going to work. Does it usually take this long before any improvement is seen? Is there something else we should be doing? We are scheduled to see Dr. Latimer again on February 27. Any advice would be greatly appreciated. It breaks my heart to see him like this. Meredith