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Cleopatra last won the day on July 16 2017

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  1. Dr. Latimer offers a whole range of more advanced treatments than Dr. Murphy including Rituxamib, Cellcept and PEX. Murphy barely offers much in the way of treatment to most, IMO. We have seen Murphy and would have gone to Latimer, but I found local treatment. I do know many parents who have been to both.
  2. Oh, and we are in S. FL and did not get it from Dr. L.
  3. Duke does use it, just not on a regular basis for all. My dd got it (not from them, our next MD gave it). Did zero for her. Then 2 PEX treatments were fabulous and after that she did Cytoxan. Doing great now.
  4. My dd has been on abx for 4.5 years as a prophy with no ill effects. She has also had 4.5 years of monthly ivig and 2 PEX txtmnts, rituxamib, cytoxan, IV steroids, etc.
  5. Hi~ I am in S. Florida, but there are many PANDAS moms in your area on the FL PANDAS Parents page on FB.
  6. My dd was 7 when her PANDAS began. She regressed about 3-4 years in age at the time. Very common.
  7. Definitely yes. My dd had stuttering and also would go mute every night. I had to have a boogie board next to the side of the bed so she could communicate with me (she slept with me). 6 months of HD IVIg got rid of it. Finally. BTW... if you go on the FB PANDAS parents pages you can find tons of parents with similar stories about stuttering and mutism due to PANDAS/PANS.
  8. My dd was on a weekly 500mg azith prophy protocol for awhile. When my dd had HORRIBLE tics (vocal, sniffing, throwing head back, blinking, etc.) 10,000x/day we swabbed her nose and found MRSA. Treated it with Bactrim and it vanished within 36 hours. Has come back with flares, but is finally under control (99.99% gone) after 5 years of ALL the available treatments.
  9. My dd (12) has had PANDAS for 5 years. After MANY (read as: all available) treatments we are left with LD IVIg and psych meds to manage her. She is doing GREAT. She has been on Luvox for 3 years for her OCD. I finally wanted to try something new to see if something else would work better because she seems to be left with baseline/residual OCD's that are minor, but annoying. I just switched her to Luvox last month. She is doing VERY WELL on it. We started at 12.5 mg and within 10 days were up to 100 mg/day. It is working exactly the same level at controlling her OCD, but her mood has improved tremendously. She is a happy camper now all the time. I am raising it to 150/day to see if it does anything more for her OCD. ** In between for those few days before zoloft kicked in she was EXTREMELY depressed. Waves of sadness would overwhelm her and she would suddenly begin sobbing. Gone completely within a few days once we were at 50 mg/day. Unbeknownst to me, PANDAS has left her with a major depressive disorder that the Luvox was covering up. *smh*
  10. Most parents have to go to OOP providers for treatment. Most of us get destroyed financially by this. I know I have been.
  11. Lisa Rankin in Port St. Lucie is a MAPS MD who take some insurance. I would join the PANDAS parents Facebook page and post your q. I would join the Florida PANDAS parents Facebook Page, in particular, and ask. There is a pedi, Robert Friedmeyer in Brandon that is PANDAS knowledgeable and friendly who takes insurance but, you must be one of his patients, he doesn't do consults and is not a specialist.
  12. Scott Smith is located on Merritt Island now. His practice is called Central Florida functional medicine. He does not except any insurance. He cost about half of the other specialists.
  13. I will reiterate my earlier suggestion. The only actual pandas specialist in that area (central FL) is Scott Smith, NP who has moved his office and is now located on Merritt Island. He is an expert. There is a pediatrician in Brandon Who is familiar but, you must join his practice as a full-time patient. I believe his name is Robert Friedmeyer. I strongly recommend against going to Rothman. You might get a diagnosis. You might not. But if you do that's all you're going to get, honestly. You need to get aggressive and you need to start traveling to see specialists. My daughter was treated by Dr. Rosario Trifiletti in Ramsey New Jersey who is one of the foremost pandas specialist in the country. When Scott relocated to Florida we switched over to him. My daughter gets IV IG, immunosuppressive, rituximab, plasmapheresis and Cytoxan therapy at Miami Children's Hospital from her rheumatologist but, those big gun type treatments should be reserved until after first line treatments have been tried with somebody like Scott Smith. I travel from Delray Beach to hours to see him. Are you on the Florida PANDAS parents FB page? or, the general Panzas parents Facebook page? You will get terrific resource information and support there. Much better than over here.
  14. My dd used Propranolol for 9 months. It is meant for fight or flight (startle reflex) type anxiety, not GAD type symptoms. It's used by performers for stage fright.
  15. My dd used Propranolol for 9 months. It is meant for fight or flight (startle reflex) type anxiety, not GAD type symptoms. It's used by performers for stage fright.
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