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Everything posted by Meilin

  1. I have been on this forum for a long time, but first time posting. My daughter is now 15, and had her first episode at age 10. At that time she had been sick with influenza, and then came the symptoms- extreme anxiety, unable to concentrate or do school work, lost so much weight she was skin and bones literally, lots of outbursts, OCD symptoms. It was a horrible time. My doctor tested her for strep - which was negative - and at that time said it was all psychological. We ended up in the ER a couple times during the initial flare and an consulted with a pediatric endocrinologist who ran a lot of blood work with everything normal. My gut knew better, and my search began. Took almost a year for me to stumble on PANDAS, and thankfully in the meantime I found a naturopath who worked with her. Through the use of supplements and oils over a two plus year time period I was able to get her functional again, but never the same girl. I did homeschool, online schools, and a blended school environment of minimal classroom time and working from home. The anxiety, fatigue, and brain fog would come and go at various levels. Thankfully she has always been a very bright and gifted child so falling behind usually just meant doing grade level work for her. Somehow she had 8 months when she was 14 of no symptoms, and I thought we had finally beat this disorder. Sadly she caught another flu bug and for the past two years symptoms are again present. The main issues now are fatigue, anxiety, and the "brain fog". She started high school this past fall, a project based school so thankfully they can accommodate her working at home when not well. They are also wonderful in telling her to work at home when there is a lot of sickness at the school as they understand the disorder. I have her back on all of her supplements, and we began working with a cognitive-behavioral therapist for the anxiety and social phobia she has developed through all of this. I haven't seen a huge improvement with the CB therapy. She has never tested positive for strep and my ped who is now on board with the diagnosis but doesn't have much to offer as she too feels it is PANS and her trigger seems to be an illness usually with a fever. We have her on a gf diet and she eats very healthy foods. She was gf even before PANS due to stomach issues. Ped wants her on anxiety meds which now CB therapist is pushing too. I am hesistant to try those. Is anyone else dealing with these lingering issues of debilitating anxiety and fatigue? Getting her to take and swallow pills can be very challenging, and I am concerned with anxiety meds making things worse. Has anyone seem long term improvement with them? I am in WI - have not seen a true PANS doctor yet. I am wondering if anyone else is dealing with similar issues or can relate to this cycle she is caught in. I do a lot of reading on PANDAS/PANS and follow different groups but so often it is younger kids and strep is the culprit. Interesting note is my younger daughter two years ago did have strep and PANDAS symptoms. She was placed on antibiotics right away and symptoms went away and thankfully have never returned.
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