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