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Everything posted by BoyIowa

  1. Any info is appreciated. We tried removal diets for tummy pains with no substantial results. Now attempting Prilosec. Next step is testing; probably endoscopy. Trial off abx to heal gut - PANS symptoms have been manageable so far. Ds just wants it all to go away.
  2. My ds was diagnosed with this in utero. He had to be checked every year. The year before his onset, we received confirmation that the hydronephrosis was gone. I wonder if it could come back. We are having GI issues now.
  3. We were just in the process. Dropped the last abx and about 3-4 days and ds got sick. Dd brought something home and is sick too. We hoped it would pass - bodies reaction to no abx. To the ped today - back on augmentin for sinus infection and possible Myco P. lower dose augmentin than ds was on, so hoping it works. Fingers crossed.
  4. My dd and ds both take magnesium before bed. Dd, 5, magnesium citrate and ds, 9, magnesium Glycinate.
  5. What's scary is that the doctor "is reviewing old cases and has discovered the strain in other patients who were undiagnosed."
  6. My dd, 5 with PANDAS for less than a year, got the nasty flu this year (and shared it with me). Fever spiked at 102.5 and she slept a lot. As the fever came down and she was up and about, she was so caring and sweet and no screaming or crying or anxiety and everything didn't have to be a certain way.
  7. Did they look like these? http://www.pansawareness.org/Downloads.php
  8. What? We have an appointment next week!
  9. http://clinicaltrials.gov/ct2/show/NCT01617083 Antibiotic Treatment Trial for the PANDAS/PANS Phenotype (AZT)
  10. 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.
  11. 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. : (
  12. From my study info: " The dosage of azithromycin will range from 9-12 mg/kg once daily."
  13. Not sure exactly about all of them. I remember that Dr. Murphy said that she was going to test for Myco P levels - had just positive/negative done before. They are supposed to draw blood every 2 weeks, but with the experience we had, she said that they would go 4. The 2 week test was supposed to be for liver function - they said they could do it at 4.
  14. 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.
  15. 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.
  16. Dd and I are head to Florida his week for Dr Murphy abx study to see if dd has PANDAS/PANS and qualifies for the study. Dd is freaked about seeing a doctor because she knows there will be blood tests. And it will be her first time on an airplane. I hope we both can do this thing! Tracy
  17. 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.
  18. Tatoomom, I picked my appointment date/time. I told them when I could get a flight there and when I could make it from the airport. I sent you a PM.
  19. 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.
  20. I don't fully understand this. Is IgG a past infection and IgM a current infection? Or doesn't it matter and you treat if either is positive?
  21. Lyme results don't look like my ds results. I just sent them to his doctor for an opinion/interpretation. He's no 'expert', but he is better than the Ped.
  22. 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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