Guest guest Posted October 1, 2009 Report Share Posted October 1, 2009 , Colleen?? I beleive it was one of you who gave me the website where you can e-mail a PANDAS doctor . Well, I emailed with my son's entire story, and the doctor e-mailed me back saying that my son has every single symtpom and that it is HIGHLY likely he has PANDAS. He said, it could be from the Lyme as well and I should pursue that also, but that he probably has both.They told me to call for a phone conference because I live so far away. Does anyone know how much it costs for the phone conference? thanks in advance Hugs judy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2009 Report Share Posted October 1, 2009 Judy, Since you say the doctor is a he, I assume you're in contact with Dr Kovacevic in Chicago (www.webpediatrics.com). I don't know how much he charges for a phone consult. But I'm sure a quick call to the office would be able to answer and also tell you whether they'll accept insurance. It's the best gift you'll ever give your son. I know many parents who are very happy with him and he's been able to help their children recover, in many cases completely recover. No matter what the cost, it's got to be better than trips to doctors who can't help. I'm glad you were able to get some confirmation regarding your son. Sounds like you're on the right path...stick with it and keep us posted. > > , Colleen?? > I beleive it was one of you who gave me the website where you can e-mail a PANDAS doctor . > Well, I emailed with my son's entire story, and the doctor e-mailed me back saying that my son has every single symtpom and that it is HIGHLY likely he has PANDAS. He said, it could be from the Lyme as well and I should pursue that also, but that he probably has both.They told me to call for a phone conference because I live so far away. > Does anyone know how much it costs for the phone conference? > > thanks in advance > Hugs > judy > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2009 Report Share Posted October 3, 2009 I have a question about PANDAS. Since PANDAS is a children's disease does this mean that it will go away once through puberty? Maybe I'm doing some wishful thinking... Jen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2009 Report Share Posted October 4, 2009 When kids reach puberty, their immune systems change and they become less susceptible to many viruses and bacteria. That's why adults don't get strep nearly as often as kids do, but they still do get it once in awhile. So it's generally thought that most kids will outgrow their susceptibility to Pandas at puberty. But if you read " Saving Sammy " by Beth Maloney, Sammy still feels Pandas symptoms coming on when he gets sick and he ups his dose of antibiotics to ward it off (not sure of he's still on prophylactic abx - he's 19 or 20 now). However, Sammy did not undergo IVIG or plasmapheresis. He was just treated with incredibly high doses of antibiotics for a long time. From what our doctors have told me, kids who are TREATED for Pandas do not seem to have issues after their mid-teen years. But kids who go undiagnosed, untreated or whose brains remain inflamed for a very long time seem to have residual problems that stay with them for life. So if you have a Pandas child, you can have a lot of hope that they will get better - but only if you get medical treatment. It's like having a broken arm. If you get it set and put a cast on it, it'll heal with no lasting damage. But if you don't get it set and it has to heal on its own, you'll always have issues. It's exhausting going from doctor to doctor to find help. But you have to keep fighting for your child. You're the only one who will. Hope this helps, > > I have a question about PANDAS. Since PANDAS is a children's disease does this mean that it will go away once through puberty? Maybe I'm doing some wishful thinking... > > Jen > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2009 Report Share Posted October 4, 2009 Thank you , I'm trying desperately to find a doctor who'll take us seriously. My dd's pediatrician was supposed to refer us to a neurologist at Children's Boston, but it's been a week and I've called 2X since then and still no referral.... Whether or not there is a PANDAS expert or LYME expert at Children's is another question. I went on the Children's hospital website and there was one doctor who had an interest in PANDAS... but I think he was a children's rheumatologist... not sure that is the right field for this sort of thing. It seems like there is so much lack of knowledge by most doctors on either of these subjects and how to treat their patients. Is there anyone out there who knows of a doctor in the NH/MA area that has expertise in either of these fields? Thank you again for all you do everyone. I don't know what I'd do without you all! Jen Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.