WorriedDADNMOM Posted July 24, 2012 Report Posted July 24, 2012 Mary, I am in Northwest OH as well. You are definitely not alone. I can point you in some directions to take and not to take. Please PM if you need to chat. Our family has one severe Pandas, one very slight pandas and another 3rd kiddo who is suspected, kinda mild. I would also look at vaccines. The history we have dug up is definite changes post MMR vaccines. Fighting thru but in a much better place. Stop at this point, take a deep breath and take a look backwards. Document everything you can remember about illness, vaccines, overall personality. Document everything moving forward----day to day personality, illnesses etc...... Read this forum and anything you can about Pandas,Pans, SC or autoimmunity. Educate your self. You are your child's best advocate. Don't feel bad about pushing back on establishment or ahead with your own ideas.
my sunshine615 Posted July 27, 2012 Author Report Posted July 27, 2012 There are more than 5 specialists, but these are some of the well known ones. There are docs that can and will help. Tell me what part of the country you are in. Our son had an acute episode just before his 4th birthday with many of the same symptoms. He had already been dx w/PANDAS, so we knew what was happening and got him to Children's Hosp. of Phila. immediately for treatment. You kiddo needs longer term antibiotics. Hang in there and know that you are not alone. You are welcome to PM me. Kath Hi, Where do I find info on these specialists? I want to get her on some waiting lists as I was advised by many parents, but am not sure whos who. I live in Northwest Ohio, but I want the names of all of them because we will go as far as we need to go for this. Thank you all so so much!
colleendonny Posted July 27, 2012 Report Posted July 27, 2012 We see Dr. Bouboulis in Darien, CT. He is pretty aggressive in treatment. He also takes many insurance plans. Some other PANDAS docs do not. Others will give names. You may be better of starting with Dr. Trifiletti, as he will do a phone consult, and he may? Prescribe abx in the meantime.
my sunshine615 Posted July 29, 2012 Author Report Posted July 29, 2012 We see Dr. Bouboulis in Darien, CT. He is pretty aggressive in treatment. He also takes many insurance plans. Some other PANDAS docs do not. Others will give names. You may be better of starting with Dr. Trifiletti, as he will do a phone consult, and he may? Prescribe abx in the meantime. Thank You, I have read some articles about Dr. B and really want to get her to him but it sounds like it will surely be months after reading some of the other posts. So in the mean timeI would like to check into some of these other specialists but am not sure who they are. I have a lot of Docs names but want to know who the top specialists are. would you let me know who others are if you know. Thank you so much!
colleendonny Posted July 29, 2012 Report Posted July 29, 2012 I am going to send you a private message
WorriedDADNMOM Posted July 30, 2012 Report Posted July 30, 2012 Mysunshine, sending you a PM. Wanted to ask a question.
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