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  1. Hello! I’m feeling VERY alone because I haven’t seen my doctor at all since BEFORE I was diagnosed and put on an antibiotic! I have been diagnosed with adult PANDAS recently on top of a diagnosis of ADHD, anxiety, hypoglycemia, hypothyroidism, and seizures I began treatment with an antibiotic last month, but I’ve been feeling VERY introverted, irritable, and indifferent for a month now, especially. Does anyone else have these same symptoms? I want to keep to myself and only work on what I need to do most of the time and I get overwhelmed or very irritable when Im in social settings or am made to talk to someone I dont have to talk to or don’t plan on talking to. I’m also very indifferent to most things I do and to most people. I don’t feel like I care about anything. My mother is VERY upset with me that I’m like this because I don’t want to talk to her and I get short with her very easily. It makes me upset that she’s upset because she’s now telling me that I’m not getting better in her eyes and that I’m not so sick that I should keep to myself in this way. In short, I kind of feel as if I dislike everything! What are anyone’s experiences or thoughts on such things with PANDAS? thank you!
  2. Hello, I am very new to the group, my 15 yr. old daughter has been newly diagnosed with PANS after doing the Cunningham Panel along with clinical symptoms. I will share her story another time but I need advice from others; She has been experiencing symptoms for nearly 3 years. I recently found a neurologist that took her symptoms serioiusly and after doing the cunningham panel she immediately started her on Azithromycin 500mg. 1 time per day. A few hours before she started the antibiotic she started to not feel well after starting the antibiotic now 10 days she has progressively gotten worse. She developed a sore throat,We tested for strep and it was negative) has been very weak, unable to stand for more than a few minutes, difficulty with walking, now anxiety, fear, bad thoughts, insomnia starting which for the most part has been handled due to dietary changes and supplements. I have a call in to the neurologist but need advice from others that have gone through this. Is it expected to have exacerbation of all previous symptoms before the healing begins from the antibiotic or is this a bad reaction to this antibiotic. I have seen that it may be better to use Augmentin or Amoxicillin. as a first line. Any suggestions or if anyone has used a Doctor in San Diego that they would recommend I would appreciate any input. Thank you
  3. Hello. I am new to this forum. My son is starting on abx treatment this week for Pandas. It was recommended that I log his response. I was wondering if there was a standard or verified tool for tracking symptoms. I am currently using a simple excel sheet and plan to use the Yale OCD scale. Any suggestions for logging/tracking symptoms? Thanks.
  4. If you have had this panel ran, I would like to know what symptoms your child is experiening. My son tested highly likely after his symptoms flared but he has also been diagnosied with another medical condition (POTS). I know some of the symptoms that he has does not belong to POTS and I was trying to figure out what goes with the anti- neuroantibodies that are found in the Cunningham Panel. My son is still in this study and the second part of the study deals with the antibodies for the heart. These antibodies have also been found in my son. I understand that these antibodies are associated with scarlet fever or rhumatic fever. I have learned that these illnesses can be caused by strep. However, I would really like to know what symptoms are associated with the brain antibodies. I was sent a couple of studies along with the test results but they did not go into detail about the symptoms that the kids were experiencing. I have found some information on scarlet and rhumatic fever symptoms. I suspect that my son probably had rhumatic when he was three years old. So if this happened first then I think the brain antibodies would come next if the strep did not get cleared up. Would like to hear what symptoms the brain antibodies are causing in your child?
  5. I am asking this question because I am wondering how helpful IVIG or PEX could be? I'm also curious what types of symptoms that your child was experiencing before doing either one of these treatments. My son has memory issues, brain fog, vocal tics, daily headache, scalp pain, tremors, unable to stand. walk, or exercise due to tremors. I want to know if these symptoms can be caused by the brain antibodies that show up highly likely on the Cunningham Panel or could the Mycoplasma P be causing these or is it a combination of everything? I also want to know if either of these treatments can be done while your child is on an antibiotic because of a bacteral infection. I know some have had some success with these treatments and that it may take several treatments before results are seen. Just need to hear your good or bad experiences.
  6. I have been looking at the Gluten Free diet. I would like to know what symptoms it seems to help. I would love to hear any, success stories. I read the one on Jessica on the other forum with Safe Plate Diet. If you did this diet, how long to it take to see any relief with symptoms. Symptoms such as headaches, scalp pain, vocal tics, tremors, fatigue and low energy levels. What were the benefits of going GF? My son has no food allergies and has been tested with tissue sensitive gluten test and it was negative. I'm just wondering if putting my son on this diet would be worth the trouble. Rachel
  7. Since my ds had a double ear infection last October his scalp pain and hypersenitiviy to touch is unreal. His vocal tics start very strongly when he washes his hair and he is in tears because of the pain. I know this is not normal and his doctors have been told of this problem. My son can also not stand to have anything next to his legs. He would rather stay cold then to have a blanket on his legs. So at night I wait until he is asleep before I attempt to cover him up. My home stays warm because I have a wood stove. After the ear infection , the Cunningham Panel was rerun and all of the those antibodies were highy elevated. When these antibodies go up like this, does it make symptoms worse? Is this the norm?
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