ecmama

Thanks I'll check those out. I live in the Upper Penninsula of Michigan, but also have my parents in Traverse City, Michigan, which is in the northern lower penninsula.

Thank you all for your replies. I'm just so beside myself with questions. It seems the more research I do, the worse I feel about this whole thing. I know I should be taking things as they come. From what I've read, it seems like my son has a sort of mild case. Did all of your kids get worse as they got older? Is it going to matter that we started a prophylactic antibiotic right after the last antibiotic we tried didn't help? So far I'm not noticing much change and he had a semi rough week at preschool with being super hyper and "handsy" and not keeping his hands to himself. We've never really had a problem with that. Ugh, I'm sorry I'm throwing out all these questions, but I just feel so alone here, as no one knows what I'm talking about when I talk to people. I hadn't even heard of it until last winter when this all started. I'm pretty sure it isn't Lyme Disease from looking at the symptoms, we later found out that he's very flat footed and needs orthotics, so we were kind of thinking that was what was causeing the knee pain, but I have also heard that joint pain can be a symptom of PANDAS. Since the orthotics, he hasn't complained of knee pain. Is there a specific blood test that will test for LD though? Thanks to anyone who can attempt to answer my questions. I'm going to call his Dr. after a week of the prophylactic if there is no improvement.

Thank you for your replies. Here is our story, I'll try to keep it short. Last fall, a year ago, I noticed his behavior changing. He was much more defiant, emotional, extremely hyper and just didn't listen. I started to think that this is what people mean when they say age 3 is worse than 2. It was very frustrating. Fast forward to Dec. or so and he was having tantrum after tantrum after tantrum, he started getting aggressive, I started to think, this JUST isn't right. Then he started complaining of knee pain toward the end of Dec. I took him to the Dr. and took whatever Dr. could see me, which wasn't our normal one. Anyway, she said immediately without even examining his legs that he might have leukemia, instant freak out on my end, so he had to get bloodwork. (the tests were neg.) New years eve, I took him back to the Dr. because his eye started to blink constantly. Again could not see my Dr. the only one available was the same one. She told me to put him back in diapers and stop potty training because he was so stressed out that he developed a tic. This didn't sit well with me. That night he got very sick, was shivering in the bathtub, had a fever, just wasn't right. The next day he was ok, but the eye was still blinking. I ended up taking him in again and told them I wanted to see our Dr. I explained everything that had been going on the previous couple months and he said that he didn't know much about this, but he said our child was interesting and was going to do some more research, but he thought it was PANDAS. He gave us an antibiotic and within a few days the tic was gone and we had our little boy back, it was literally like an exorcism or something. SO everything was great up until May and I started to notice the behavior declining again. I called and told them that the same sort of thing is happening that happened in the winter and I want to catch it early because I didn't want it to get to that point again. The Dr. wanted a blood titer done and it showed no signs of strep. He concluded that his allergies were preventing him from getting sound sleep at night which would explain the behavior, I said fine because there were no visible signs. Now this summer was pretty hazy because so many things went on with our son between ear infections, traveling, etc. that it's hard to remember the timeline, but the Dr. wanted him to have an eeg, that came back normal. Now, at the end of July his Dr. called out of the blue and said he had been doing more research and talking to colleagues and decided they wanted him on another round of antibiotics because he should have had 2 rounds back in Jan. I said great that's what I've been wanting since May. So we did that round and right at the end of that, he developed a massive ear infection, so he was put on a different antibiotic. Now, for about a month or more the behavior has been declining and a couple of weeks ago the tic came back. I can tell you the last round of antibiotics he had, which we just finished on Mon. was Ceftin for 2 weeks. After 10 days we had a follow up and I told him I hadn't noticed much of a difference and that the tic was starting again. He decided to put him on Penicillin for 6 months as preventitive and that is where we are now. Just started that on Tues. So basically in a nutshell, his symptoms are hyperactivity, ODD, the eye blinking and general behavior problems, which all usually go away with treatment. Honestly, he's been on different antibiotics for ear infections and this whole thing in the past year, that I couldn't even tell you what he's had. He's never once complained of a sore throat, so my theory is that it's in his sinuses because he's always so sniffley. I don't know. It's all so new and we live in a somewhat small area and I'm pretty sure this isn't very well known around here. Like I said, we seem to be learning as we go. It's all very frustrating, but I'm happy that my Dr. is working on it with us. Geez that was long, sorry.

I was wondering if anyone has any very young children with PANDAS? My son was diagnosed last January right when he turned 3. So far we have treated him 3 times, this last time the antibiotic didn't help much at all. My Dr. put him on Penicillin for 6 months and we just started that on Tues. Reading through these different groups and forums, I'm noticing most of the kids affected are school age. I was hoping to find a parent of someone very young like my son. Both myself my husband and my sons Dr. are kind of learning as we go with all of this, so really I don't know a whole lot about this other than what I've read online. Thanks in advance!