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  1. My dd which was diagnosed with PANDAS a few months ago, underwent a tonsillectomy on June 1. She has had a terrible recovery, infection, allergic reaction to antibiotics, ect. Today she went in to see her pediatrician at the request of her surgeon. She has had an ongoing fever since the 1st. They did a strep test, which was negative and a rapid mono test which was positive! I am So surprised! They are sending her doe blood work, because they think there is something else going on as well. Anyone's kids that have a PANADAS/PANS diagnosis that got mono? How did it affect their symptoms? Thank you!
  2. I'm so sorry. I think having a good day is a great sign too! I know exactly what you mean though. We get in a routine of dealing with the "bad" on a daily basis. We just get it done and we can handle it. Then, when we see glimpses of who our child use to be, it makes us sad. It reminds me of what our lives would be like had we not been thrown into this life with PANDAS. Hang in there, we will all get through this!
  3. I'm not opposed to doing a 30 day cycle of antibiotics. They just weren't prescribed. I guess they want to see how she does after she heals from her surgery. She does still have a fever, so I'm going to call and request some. I don't know if this is the same for anyone else. But with my daughter, her symptoms would flare and we would know that her tonsils would also be inflamed. They always went hand in hand. I could tell how her tonsils looked by the way she was acting. Has this happened with anyone else? Unknow the infection went deeper than just her tonsils, but I really feel good about getting them out.
  4. Right, I understand what your saying, but at this point, she has been diagnosed with PANDAS, not PANS. So we are focusing on getting the strep out of her system. I'm. It saying that it is going to "cure" her, I'm just hoping and praying that it helps alleviate her symptoms. Now, if the abscess that they sent to be cultured comes back with a different bacteria, then we will deal with that then. As for now, we are trying to get the strep out!
  5. She has been on abx off and on. We are not going to put her on continuous abx. She didn't want her on it directly after surgery. She said she felt that her PANDAS symptoms would subside after tonsils were out because she was pretty confident that the strep was "hiding" out in her tonsils. So what I gather is that if we can potentialy get the part of her body that keeps hanging on to the strep, out of her body then we are more likely to keep her healthy, and in turn keep her symptoms at bay.
  6. Thank you for sharing! They did not put her on abx either. She also has a fever, but that high (102-103) The dr said not to worry, just make sure I keep the fluids in her. I can't help but worry though, I wish they had prescribed her abx
  7. Hi everyone! I'm new here. We have been thrown into a whining of information and I feel like I'm underwater! Our 5yr old was recently diagnosed with PANDAS. We noticed her change in October of 2014 after a strep infection. She has not been the same since. She has had good days/weeks and really bad ones as well. 2 days ago she had her tonsils and adenoids removed at UCLA by Dr Alisha West. She said they needed to come out regardless of her PANDAS. But is confident her symptoms will go away. During surger they found a large abscess and sent it to be cultured to find out exactly what bacteria was hiding in there. We are at home and she is trying to recover. She is in air of pain and her tics are significantly worse. Have any of you had luck with symptoms subsiding after tonsilectomy? If so, how long did it take and what else did you do? We also have her on Vitamin d and b supplements. Calcium supplement and oregano oil. Any info would be great! We just want our little girl back
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