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  1. Hi Everyone, New to this forum and so glad I found it. I was really hoping you give me your "in the trenches" opinion of whether we are dealing with PANDAS/PANS and what a reoccurrence might look like. DD5 has always been a bit of a challenge in terms of characteristics she displayed (inflexibility, ridged, OCD tendencies, sensory issues, etc) but we always assumed it was just her personality. Last May we hit our breaking point in terms of being able to cope with her behaviours and routines and we sought the help of a child psychologist. Within the first session she said it sounds like she has a lot of OCD tendencies to which my husband and I were shocked and didn't really buy it. We just figured all this time she was just a very particular kid. Her routines at the time were around always needing to perform 5 perfect cartwheels in a row, playing a game when we would walk through the door where all had to pretend she was a little girl named Sarah and she was visiting our family etc. We also had a lot of sensory issues around only wearing seamless socks and a couple of shirts she would accept. She got very bad nightmares and started sleeping in our bed every night as she was truly terrified to be alone. At the height of these behaviours, she had also just recently had Strep, Hand Foot Mouth Disease, and developed an autoimmune disease called Pityriasis Lichenoides which basically looked like she had chicken pox for 4 months. The behaviours weaned off, we dismissed the OCD and life from Oct to Dec were good. December she got strep again. First week of January we started with terrible rages that occurred every single day after school. She was very aggressive and abusive towards our family, but mainly me (mom). A few times, our little girl was so scary and out of control I almost called the police on her. Other OCD behaviours started up again as well (she had a circle drawer in her room where only circle things could go), had major separation anxiety. She did have a tic but it only lasted about 2 weeks and was very mild. She started rubbing and pulling at her fingers and tucking her hair whenever she was nervous. By the end of March, the rages weaned off (went from daily to 2 x a week) but the anxiety picked up big time. She was fearful of losing control of herself and hitting me again, she didn't want us to have people over at our home, didn't want to go out to familiar places, had a panic attack at the dentist (never a problem in the past) and has a lot of fears like dogs, needles, vomiting, germs, etc. To date, the anxiety remains and some days are worse than others...but the rages are gone, thankfully. We have been to countless doctors and everyone keeps saying there appears to be a PANDAS link. She is on the waitlist at the hospital for Sick Kids in Toronto to see Dr. Arnold. I think we are looking at November before we get in. She was recently assessed by a local psychologist who diagnosed her with Generalized Anxiety Disorder, Separation Anxiety, Social Anxiety, and has symptoms of Panic Disorder and OCD. Despite the residual anxiety, she seems to be coping okay and our days are much better than they were from January to April... but it is sad to see this anxious little girl we are left with. She even dropped out of her favorite sports because of the "people and performing". Here are my questions: 1. Does this sound like PANDAS to you from our most recent episode (Jan to current) and if so, is it likely that last May was also a PANDAS episode? She has not experienced many tics, nor was the OCD our major symptom - it was the very out of character rages and the depression that followed every aggressive rage where she would beg us to move to another home or tell us her life felt like it was dead. 2. My older daughter had strep throat 10 days again. I have been panicking that our dd would also get it and we would be back to the rages... so far, despite her saying her throat felt a little funny yesterday, we have no fever and no signs of infection. Her throat could have also been anxiety related as she gets a stomach ache and feeling like she wants to throw up every night at bedtime. If dd was going to get a strep infection from our oldest daughter I assume it would have happened by now..but let's just say she does...how long after the strep infection is diagnosed would the symptoms start back up again? If it is PANDAS is it a guarantee that a strep infection will bring us out of remission and symptoms start back up? Is there a chance she could get a strep infection and not react again *Note, dd has a history of testing positive for strep but never complains about a sore throat. Several times we have taken her to the doctor because she stopped eating or her voice changes and strep test always comes back positive. She also seems to get yeast infections quite frequently I'm so sorry this was so long. I think I needed the outlet...... Any help or advice is truly appreciated.
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