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Everything posted by Tamistwins

  1. Pandasphilly sorry not sure y I can't pm u.
  2. Tamistwins can you PM me the name of the mom you spoke with? I'm am considering this for my son.
  3. Thank you rowing mom, I have spoken to one parent who saw positive results, a changed child and I wish I could hear more positives from other people because like you said $$$$
  4. Hi I'm looking for any and all feedback on your thoughts of the hansa center. Who has been there and have there been significant improvement with pans like behaviors? Positive and negatives welcomed! Tia
  5. Hi have you ever treated with a yeast medication? Yeast can make one very giddy.
  6. Not sure, sorry I hope everyone feels better soon!
  7. Because my son developed a rash I was researching. Parvovirus is also known as slapped face or fifth disease. They say it starts on face and then spreads to arms and rest of body. Oddly enough my son started elsewhere and then ended up on cheeks too. They say it can be itchy also which is why I don't think that's what my son has. So hard to know there are many types if rashes. By the time the rash comes out its no longer contagious even though it is highly contagious. Were there any symptoms prior to the rash?
  8. Would your doctor be willing to prescribe valtrex it's anti viral?
  9. Thank you crunchfly! I shared pictures with pandas doc and he thinks parvo virus. Will see from bloodwork!
  10. What did the Pediatrician do? I think this is what my son has too. We are running blood work tomorrow and will test for parvovirus titers too.Thank you!
  11. Hi my almost 4 yr old son has developed a rash on his chest, back and arms yesterday. I gave him Benadryl and today it has spread to his cheeks. What do you all do in this case? My son is already taking abx and viral medication, no recent changes have been made that would cause a reaction. Do you think this is shedding of virus or something else to be concerned about?It's small red dots all over. Very hard to tell in the pictures I have taken. Tia for suggestions, Tami
  12. Hi chad, Thank you for sharing, I have 3 children with pans. What I find interesting about your post is that you got high fevers with every strep infection. I wonder if that is the reason why you improved. I think many of our children have problems with their immune systems and don't present with typical symptoms of fever with an infection. My children never get a fever because their bodies don't fight off their infections properly. I am thrilled that you have improved and think its wonderful that you want to share your experience. My children don't express how they feel inside, aside from just complaining that they don't feel well. It would be great to hear how you as a child felt during that phase of your life.
  13. Hi Teri, There is parking in the lot and you will need to get a paper from the office to put in your car window. Dr. J will give a full exam and if any lab work is necessary they will be able to put lidocaine to numb the area. Good luck with your appointment!
  14. Hi I was wondering if anyone's child has been treated with Tamiflu by a pandas doctor and if you can share your experiences. Tia
  15. I have a 3.5 yr old with pandas who seemed worse on Zithromax. It may be the dye too. You can ask him to switch antibiotics, it doesn't mean your son does not have pandas.
  16. We are also on valtrex I understood it treats viral issues, why do you think it's a bartonella herx isn't that bacterial infection?
  17. My son was put on clindamycin back when he had a stubborn strep infection that didn't go away with a 10 day course of antibiotic and he was banging his head from it. That's when we then got pandas diagnosis in 2008. At that time clindamycin helped. He has been on so many antibiotics and eye blinking was never a big symptom of his. I am surprised to see it affecting his behavior this way. We too were on rifampin with Dr. Jones and I never saw him herx. This time Dr. T is treating and he isn't treating for Lyme co infections. It's quite possible there are co infections but never got a positive lab. He has strep, mycoplasma, Ebv, coxsakie A , strep is under control now. Don't know what to do anymore.
  18. Two of my children were prescribed a 10 day course of clindamycin with rifampin to be added in on last 4 days. They have been on it now for about 4.5 days and I have noticed an increase in blinking and extreme nastiness and opposition from my son. Could this be herxing, has anyone else experienced this with clindamycin? Or should I discontinue this antibiotic? Looking for suggestions on what to do. Tia, Tami
  19. There is also Dr. Bouboulis in Darien Ct. allergist/immunologist.
  20. http://m.healthgrades.com/physician/dr-susan-schulman-2r562 She has you tube videos and has a large practice with many pandas patients. She is a Pediatrician in Brooklyn.
  21. Thank you very much for all your responses and help. We also have tried all different antibiotics, herbals, homeopathy, Ivig, steroids. In sure there's so many more things to try but I am not seeing results with anything anymore. Thanks again!
  22. Can you name the doctors who have helped with this please.
  23. Tpotter what about the kids who have known infections that have not cleared. Is it ok to go ahead with plasmapheresis, will that rid the infections? Is pex and plasmapheresis the same thing?
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