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OhioDad

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  1. Hello to everyone on here struggling with PANDAS. This is something that I had no idea even existed. A couple weeks ago my fun loving, enthusiastic, spunky 6 year old daughter woke up as usual to go school. As we were standing in the kitchen talking I noticed that her eyes were blinking rapidly every so often then rolling upwards. It was something that must have continued through the day because when she came home it was still happening. The next day it was a bit more frequent. We decided to take her to the pediatrician. The DR gave her a physical exam...checked her eyes, ears, and noticed her throat was irritated. As she said strep can make crazy things happen. They preformed a rapid stress test that came back negative. Over the next few days her personality remained the same as her tic became more and more frequent. Then we received a call from the Dr saying that they received word from the lab that she indeed has strep. Immediately we started her on amoxicillin. Over the next week she improved a bit each day. By day 9 she just had a slight blinking tic. Throughout these 9 days my wife and I googled strep and tics and were horrified to learn of the world of PANDAS. We made another appointment with our Dr to extend her cycle another 10 days. From there we aren't sure what to do. She Dr is reluctant to say that she has PANDAS because so little is know if it, but us willing to try to treat it at our request. We have made an appointment with a PANDAS specialist, but that isn't for another month. During this time period we are going to continue on the amoxicillin and see if the tics completely disappear. From there the pediatrician would like to stop treatment and see if anything returns. If it does, another round of antibiotics followed by years of low dose penicillin to keep strep at bay. From reading and researching we are gathering that if my daughter does have PANDAS hers is a more mild case compared to others, but no less scary as a parent. I see a lot of parents that have children treated with steroids as well. What is the reasoning for it? How does it help? I really don't know how I feel about having her on penicillin for the next few years, but I also fear the unknown of having a specialist work with us. Are there any parents out there that had a child experiencing only tics with their positive strep? What did you do and what are success stories? Thank you!!!
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