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Posts posted by BoyIowa

  1. Thanks Dedee!


    I didn't see the test results. I didn't quite get it because dd was recently MycoP negative for IgG and positive for IgM. Dr. Murphy said that dd titers for MycoP were really low. Not sure if they checked for active infection. Shouldn't dd have higher titers if dd had a recent IgM active infection? I will asked next visit. I was distracted by my dh sending me texts from the car with my ds, 'R u done yet?' and 'Let's go to the beach!'


    I can't wait for the next 2 week visit! I think we might have gotten the placebo - abx guaranteed at next visit. Have not seen any change in dd for the better.

  2. I am happy to report that our second Abx Trial visit went much, much better than the first (no screaming).  We saw Dr. Jordon and Dr. Murphy again.  Dr. Murphy thinks strep was her trigger - titers high.  Though dd has been exposed to Lyme, H1N1 and MycoP.  Dd had to make a special stop by Dr. Mutch to say high before we left.  The entire family went for the weekend and had a wonderful time on the beach and in the waves.  Not looking forward to the next visit - blood draw. : (

  3. At one point my dd clung to a cabinet and a chair in the office. I told her she better not hit anyone when we let go of her - we were safe.

    The trial uses Zithromax, but dd has 50/50 shot of abx the first 4-weeks (blind portion). Everyone gets abx the next 8 weeks.

    They are running a lot of tests. Dr. M even recommended a couple of tests that are not part of he study.

    Less than 10 in the study at this point.

  4. Those doctors/nurses at the Rothman Center are saints!! We were in Florida yesterday for a very, very long day of questions and forms and tests for the baseline visit for the abx study. My dd has been stressing about this visit for some time, because she knew they wanted blood and she HATES to give it. Throughout the day we made several attempts to collect some with coaxing and bribing, but she wasn't having any of it!! They even put lidocaine on her arm so it was numb. At one point I thought Dr. Mutch had her convinced.


    I would like to apologize to anyone that was there yesterday who had to hear the scream. It took 2 doctors and I to hold her while the nurse drew her blood. She screamed like we were sawing off her arm. During the scream, I kept reassuring the nurse that she was doing a good job, because I could see her shaking a bit as she filled the tubes. Dr Murphy came in to see if she could offer any assistance. I asked Dr. Murphy later to tell the nurse that she did a good job under all the stress.


    Good news, we are in the study. Told that dd PANDAS/PANS could have been brought on by any one of the triggers [Lyme, strep, Myco P, H1N1 (we think she had)] as dd has history of exposure. Bad news, we have to do this every 2 weeks, but the visits should be much shorter. Dr. Murphy said that she was going to try and draw blood every other visit because of the difficulty.


    As promised dd did get to jump on the hotel room beds, and got her dinner choice - bacon and cheese pizza. Maybe next time we will see those dolphins that I promised.

  5. Our dd presented very similar. We found active Myco P. she does have a history of multiple strep and ear infections, though. Strep titers normal range. Found IgG positive for Lyme. We are heading to Dr. Murphy abx study this week. Hope to get some answers.

  6. My DS presented at age 6 - dx at 8.


    Heading to Florida with DD next week for Dr. Murphy study - presented in May (she is 5) - no offial dx yet. DD also presented a bit different than DS.


    My maternal grandmother had Parkinson’s, my paternal grandfather had Alzheimer’s, my father-in-law has Lupus, my sister was just recently diagnosed with crohns disease and my husband has mild ITP.

  7. Thanks for the pep talk and support. I am the type of person that looks for the answer/outcome without lookong at the steps to get there. I know that if I take it one step at a time, I will make it.


    I don't know what I would do without all the wonderful parents on here with their knowledge, experience and support - thank you all!! I don't always get the best support with family and freinds. Sometimes I'm told that I am overreacting or it feels like the spanish inquisition.


    My sometimes reluctant dh has agreed that we both need to be tested for Lyme too. I believe that this news may bring him more 'into' this fight.

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