SarahG

THANK YOU!! I appreciate so much the responses and it gives me some hope that we will see improvement. I'm also curious about reoccurence. When someone has had PANDAS, do they ever not have it? In other words, when they get better and then come up with an infection, do the symptoms start up again?

Hello, My son has been on steroids since Sunday a.m. (Prednisone) and we have actually been seeing his tics ramping up. His body does seem to be trying to get rid of alot of "junk" from his lungs and sinuses so I think the steroid is working to get rid of the infection (the one I believe keeps him symptomatic) but I am worrying about his tics ramping up. For those of you who have used steroids, how long did it take to see an improvement in PANDAS symptoms? Thanks!

Hello, My son has been on steroids since Sunday a.m. (Prednisone) and we have actually been seeing his tics ramping up. His body does seem to be trying to get rid of alot of "junk" from his lungs and sinuses so I think the steroid is working to get rid of the infection (the one I believe keeps him symptomatic) but I am worrying about his tics ramping up. For those of you who have used steroids, how long did it take to see an improvement in PANDAS symptoms? Thanks!

I am new to the forum too. My ds6 has had a tic for 2 months after exposure to Strep. In Nov. Dr. put him on Cedax for 10 days and he got a little better but had a tic. I didn't know about PANDAS at the time so I thought the behavior would extinguish itself. Two months later he still he licks his hands and then wets around his eyes about repeatedly. This week he was dx with Tic Disorder from the pediatrician, but when I mentioned PANDAS and putting him on abx she told me that PANDAS was not his dx. She did refer us onto a neurologist, but 3 days later still do not have an appointment. Blood test for antibodies was run today. Waiting on results. My reason for thinking my son has PANDAS is the sudden onset of tics in conjunction with strep. He was not dx with strep at the time, but he and I were both exposed. Hi, My son wasn't diagnosed with strep prior to his onset either, in fact, I had taken him for a swab culture and it turned out negative which was why, when initially diagnosed with TS, I didn't really research the possiblity of pandas. Did your pediatrician order the test for antibodies?

Hi, Thanks for the response. Did the Igenex testing identify the pneumonia or just the Lyme for you? When your son had Lymes was he very sick? or can Lymes be like strep and exist sometimes without a whole lot of symptoms? Thanks!

Tammy, I hadn't thought about my ds's tics being compulsive vs. involuntary, but now that I'm giving it some thought, I would have to say that might be the case. It's very difficult to unravel what is what when it comes to the tics. Thanks for your helpful response!

Thank you! I appreciate that. It was great to find this forum, we felt so alone in all this!

Hello, I am becoming more and more convinced since reading posts in the forum that my 9 year old was misdiagnosed with TS, instead of PANDAS. I have always been uncomfortable with the ts diagnosis and reading some of the posts about pandas is like reading our own story! I have several questions, first of which is: When a pandas child's symptoms are in "remission", do they completely disappear, or are they just at a reduced level? Also, my son has severe vocal tics (coprolalia) and some motor tics but very mild ocd, is this unusual in pandas? It seems that many people experience the opposite - severe ocd and mild tics. Any information would be very helpful. I am just now learning about pandas and want to be sure my son fits the PANDAS diagnosis before I approach our doctors with the possibility. Thanks! Sarah