Hello! I am new to the board and will try to be brief with my questions/situation.
I have an almost 7 yr old daughter who started with "symptoms" (hoarding, dressing issues, extreme fears) at 3 yrs old shortly after starting preschool. She had strep twice during that year. I brought the idea of PANDAS up to my pediatrician but was shot down and so she was not tested.
Since then, every year, she has struggled with periods of OCD-like behaviors (fixation on breathing, frequent urination, fixation on getting her clothes/seatbelt/shoes just right). The behaviors vary and really only flare up once a year for a period of about a month or two. My husband and I kept thinking it might be PANDAS because her flare ups seemed to be around the times when she was also sick. However, rapid strep tests showed no strep so we didn't push for blood work.
Then about 3 weeks ago, she started with a tic (clearing of the throat and some uncontrollable noises-sort of like humming). I asked her to stop as this was a new behavior for her and seemed to come out of nowhere but she said she couldn't. It got pretty bad (although controlled somewhat at school) and was coupled with her feeling as though she couldn't get a deep enough breath. Then yesterday, she broke out in a rash which was from Fifth Disease. I read that Fifth Disease can stay be in your system 3 weeks before the rash appears. It was then I had an A-HA moment and thought maybe her OCD was related to viruses in addition to or instead of strep.
I am just starting to read about PITANDS. Some other info about my daughter: no learning disabilities-tested as gifted, becomes surly/moody when dealing with her flare ups otherwise happy and outgoing, brief stint with OT for sensory integration disorder to help deal with clothing thing although I am convinced it is more OCD vs. SID, pediatrician is of no help.
Of course, I have a million questions but a few are:
Is there a test for PITANDS?
Where should I start with all of this? New pediatrician? Psychiatrist? Neurologist? We are in GA.
Can someone have PANDAS and have rapid strep tests be negative?
Does this sound like OCD/TS not related to PANDAS or PITANDS to anyone?
Thanks for any input you may have. This seems like a wonderful site and I am so glad I found it!