anotherworriedmom

Update 3.5 years after initial onset....dragging up a really old thread.... My DD had another episode one year after the first one. She was sick about one month before it hit (intestinal thing - throwing up, which she rarely does, but did with her first round of PANDAS, really odd, toxic-smelling gas). Both sicknesses were springtime. Again, the onset of symptons were sudden (can pinpoint the evening), but they didnt manifest as classic OCD as the first round did (perhaps because of the CBT, DD had more knowledge/was trying to supress symptons ?). She was watching a movie, and couldn't follow the plot without tons of (repetitive, irrelevant) questions about the background of the storyline. Repetitive, irrelevant questions seemed to be her thing this time. Her grades also dropped since she couldn't concentrate, but she only had one month of school left, so we just rode it out. We returned to our DAN doctor, who prescribed high doses of antibiotics. Our daughter developed an aversion to needles during her first round of PANDAS. Our doc prescribed the antibiotics without a blood test, fortunately. We also returned for a short cycle of CBT. Thankfully, this round we were prepared and it didn't send us into a tailspin as the first episode did. Within 4 months, with the start of school, DD was pretty resolved by then. We made it through the following 2 springtimes without exposures/recurrances. I realize our case is quite mild and clear cut compared with what most of you are dealing with. We suspected PANDAS and were seeking treatment for her within 5 days of her first onset. I owe a big thanks to this forum and it's resources. We could not have started so early without the google hits that led me here initially. I will always be grateful for all the information you share so openly. I skimmed a bit of this forum - I so amazed at the new treatment paths that you parents have forged in just the past 3 years (genetic testing, supplements, etc.). Though PANDAS has been on a backburner for us for a while, I do hold those of you in the trenches in my thoughts and prayers; I wish you all the best.

Hi Dedee, We see Dr. Kalb, and we are happy with him. I sent you a PM. Let me know if you have any questions. anotherworriedmom

I just wanted to check in with an update...our daughter's symptoms are now in remission, and they have been for about 4 months. We were able to move our appt with the DAN doc up to late June. He sent away for the Cunningham's test and others, and the results pointed towards PANDAS. She was on daily Keflex or Zithromax until late October. She went to twice a week antibiotics (Zithromax) about a month ago, once her aso titers were in the normal range (228) and her anti DNAse B dropped to 382. Back in June, her Rx ran out after 10 days, and her symptoms were ramping up after about 36 hours. So, we saw a direct correlation with antibiotic use and her symptoms. We also did about 2 months of cognitive behavioral therapy. I think it was most beneficial to our daughter to learn what was going on with her in a framework that she understood. She also learned a few 'tricks' to keep her OC Flea at bay. And, it was good for my daughter to hear that there were other kids with her issues. I am so thankful for the internet and all the families that share their stories. Really, it was a lifeline for us those first few weeks. At the time, I really needed to read a story where there was a good resolution, for at least for a while. We won round one with PANDAS. We are hopefully delaying round two by staying on antibiotics. But, we are so much better prepared than when it hit us the first time.

Just a quick update.....my daughters ASO titers were 767 (ill 4.5 weeks prior). She was switched from Amoxicillin to Keflex, and we saw a marked improvement in her syptoms in about 24 hours. We have an appointment with a local DAN doctor (best I could do locally) for mid-August. She has been responding well to CBT. We are still searching for a ped who is willing to be educated in PANDAS. In the meantime, should we ask to have her titers retested? If the Keflex hasn't kicked the infection, about how long will it be before we see an increase in her syptoms? She finished her course of antibiotics yesterday. We were planning a trip to SE Asia for later in the summer. We are still deciding whether to go or postpone. If we go, it is recommended for kids to have a typhoid vaccinne. Up until this episode, our daughters' immune system has functioned typically, and we did all the recommended vacinnes. Do you guys go easy on the vacinnes now? Lastly, OCD (with our supsected link to PANDAS) is our daughters' only identified issue; she is almost 9. Really, of our family of five (3 kids adopted, so no bio relationships) she is the least quirkiest of all of us (present episode excepted). Are there any families with uncomplicated/not terribly pervasive cases that find suitable docs locally to treat? Or, do pretty much all families end up consulting with the handful of experts? We are 3+ weeks into this, which a realize isn't that long. Many thanks in advance for answering my questions.

Hello all, My dd, age 8.5, was recently diagnosed with OCD. The onset was incredibly sudden. She has always been the picture of health, both mentally and physically. She does well in school, is well liked by her peers, and has always been a joy to parent. She loves to write, and I've dug up her journals from the past year; there is barely a mention about worrying. We are starting CBT with a therapist who treats pediatric OCD (listed on the ocfoundation.org website). My daughter's symptoms are asking 'Am I lying?' repetitively. First thing in the morning, after a period of silence, after immediately asking. She would also repeat 'never mind' when she was by herself. She has since expanded to 'Am I lying? Promise? Swear?' She mostly asks us, her parents, and her little sister. She has a hard time answering questions and responds with 'Do I have to answer that?'. She can keep in check when she is around her friends playing at the pool, but as soon as they are gone she asks again, multiple times in sucession. She says when she is with her friends, she still has her questions, but she has no one to ask so she doesn't. She has also started asking for someone to be in her room while she falls asleep, which is quite understandable. She also wrote a song the other day. Excerpt: "there are no real worries, I know I am special because I am honest, you promise and I breathe in and push the worries away...." I think that is where she wants to go, not where she is. But, I am optimistic that she will fully participate in therapy. We suspect PANDAS, since the onset was so sudden, and our DD was sick about 4 weeks before the onset of symptoms. Our (now former) ped doesn't believe in PANDAS, so he wouldn't do the strep test, but he was willing to provide an rx for both her and her sister. Go figure. We went to a family clinic attached to one of the local medical schools for both the 48 hour test and a blood draw for the titers. We are still waiting the results of the tests. My husband and I started antibiotics, too. She is on 400mg of amox, 2x day for 10 days. I now know that is not likely going to do it, if it is PANDAS related. We have not seem any improvement. I realize we are being a bit shotgunish with the PANDAS part. I had already checked this site, saving sammy, ocfoundation.org, and emailed info.pandasresourcenetwork.org (broken link), and googled countless websites. I cannot find a doc listed for PANDAS in Nashville. Can any of your provide a name of a doc in Nashville that could provide treatment for PANDAS? Or, can any of you provide links for a doc that is willing to be educated on the standard anabiotic protocols for kicking the PANDAS strep? I have read the stickies at the top of the forum. I have found plenty of sites for parents, and while I think they would be valuable for anyone, I suspect most medical professionals prefer something written for them. My impression is that getting a good diagnoses for PANDAS/strep is tricky. My hope is that a doc would be willing the skip that for now and go ahead and prescribe amoxicillin or azithromyicin or whatever it is for a long enough course of treatment to get it under control, and go from there. I do apologize in advance for the handholding request. I'm really scared for my sweet daughter, and have been prowling the internet constantly. I rarely have seen an ending to the countless stories I've run across. Seems like it will be a constant in our life, whether PANDAS or not. anotherworriedmom