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emma1

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  1. Would anyone have any advise to share regarding Anorexia and PANDAs, My daughter is 12 and has had PANDAS since around 3 when she was admitted to the hospital because she had serve tics and they were checking for seizures, the next episode was when she was 5 and she had almost every PANDAS symptom, since then we have had some flares and treated with antbiotics but nothing that has taken her life away from her. I was lucky to get in to the PANDAs clinic at MGH so I stopped following all the PANDAS information which was a mistake because now I am in a crisis and having a hard time finding the time to catch up while this is going on. She had three strep infections in Dec, Jan, Feb and shortly after would not eat for days and then limited calories. We went to MGH and she is on clindamycin but after a week she still continued to lose weight and her primary diagnosed with anorexia. We are about a month in and the doctors treating the anorexia say we should be following family based therpay to get her better. We were able to refeed pretty quickly and easily but they keep pushing her to eat more to get back on her growth chart projectory. I fully understand this thought but I am also thinking if its the PANDAS can I just let her eat what she is comfortable with as long as she does not back track until hopefully this flare passes. The FBT is causing her to have rage and violently lashing out at me. In FBT they say they don't care how the anorexia came on and its all treated the same. I am afraid the anorexra talk engraves it into her thinking and I coming on too strong after only a month and she is now eating what she is comfortable with. I know anorexia behaviors have to be changed but could they change on their own without pushing to hard if this comes from a PANDAs flair. Also wondering if anyone that has come out of this can share what worked, vitamins, antibiotic, therapy. I have not see the PANDAS doctor again yet but did speak to him and he said maybe a low does of zoloft but that scared me too. Thanks so much for any help you can provide.
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