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Everything posted by Cleopatra

  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.
  16. Even better if you get 6 HD mostly doses in your child before dropping him. My dd has has both HD and LD. She has had LD @ .85 g/k for 3 months close in time to her onset which made her exponentially worse. It induced hallucinations, mutism, seizure like activity, etc. HD has been given to dd monthly for about 3 years. Worked for sure very well for the first 1.5 years. After that, not sure, but, we kept giving it because we tried other treatments as well and none of the MD's wanted to rock the boat and wean her. Duke U. treats with 2g/kg for the 1st month then usually drops it down to 1g/kg for 6 months along with immunosuppressives, but, that made my dd worse so i added my own IVIg to their protocol (under other MD supervision!) because practically speaking, 1g/kg usually isn't enough to do the trick. If your child does worse when you lower the dose you need to increase it IMMEDIATELY.
  17. My PANDAS daughter, age 11, was recently given Ketamine as a sedative to insert her central line for Plasmapheresis. She FLIPPED OUT!! Started having full body tics that gave way to leg tremors and ultimately ended in hallucinations. Why in the world would you give Ketamine as a treatment? I understand it's use as a sedative and it's very common to give with surgical patients.
  18. While drawing a hard line against OCD works, in theory, in reality, if your child is flaring due to Pandas and they are young it is extremely difficult for them to implement any strategies to help themselves. The younger they are the harder it is I have found. So, while that is always my plan and they are young it is extremely difficult for them to implement any strategies to help themselves. The younger they are the harder it is I have found. So, while that is always my plan a A, plan B is giving her anti-OCD and anti-anxiety medication. As soon as the fliers under control the OCD vanishes. This time it was plasmapheresis that knocked it out. Proper treatment of the immune system is the answer here. But, my child is still in elementary school. The damage being done by her crippling OCD when she has it gets better with time and treatment and hopefully, will become a thing of the past. I can't say what I would do if she was in high school. But, if pandas or pants is driving the behaviors you need medical intervention. And, SSRIs and other meds work miracles in the meantime.
  19. Also, clonazepam is great for general anxiety here and propranolol is amazing for fight or flight type, sensory reflexive anxiety.
  20. They did it because Dr. T's office is a hot mess. He's awesome but, disorganized. Absent-minded professor type. We've tried everything but minocycline and doxycycline. Dr. T prescribed Luvox for my daughters OCD and it works extremely well. But worked even better this year was plasmapheresis. Two rounds. IV IG stopped working I think.
  21. You need to find a really good pandas specialist because there are many many different types of infections and different types of antibiotics that they will respond to. Sometimes you have to find the right combination. Sometimes you need to stay on them high dose and or long term. I don't think that you can treat this by just throwing a couple of basic antibiotics at your kid. also, after a while these kids are beyond refractory. Their immune system and autoimmune response goes on autopilot and there's no infection at all, but, they keep making anti-bodies like in my daughters case. I have never purchased antibiotics online. But, I have purchased other medications from Canadian pharmacies online. I have been told by a reliable sources, friends, that the antibiotics sold for fish are the same as the ones given for humans. I know people with lime who can't get medications except for this way.
  22. Dasu~ there are still zero protocols re; PANDAS.
  23. Any MD will tell you that it takes 3-6 months post IVIg for titers to be accurate. The IVIg definitely skews the results. It's supposed to.
  24. Not really realistic to keep children out of your room or bed if the have severe separation and sleep anxiety and OCD due to an inflamed brain. Better to invite them in and be selfless, IMO, until they can sleep on their own. It took my daughter 3.5 years.
  25. My daughter had her PANDAS onset in August of 2012. She made it to 1st day of 2nd grade and missed the entire rest of the year on HHB. Was too sick to receive any instruction and skipped to 3rd grade. Missed 2/3 on HHB. Missed 2/3 of 4th grade on HHB. Missed this entire year, so far of 5th grade. Gets 8 hours/week on HHB via 2 different teachers. BEST thing for her. Do it!!
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