Guest guest Posted March 18, 2005 Report Share Posted March 18, 2005 Hi, As far as the genetic testing goes the lab info is in the files section but I can tell you that parents do not need to be tested, at least in our case they tested Breana herself. The tests were conducted with blood samples. Breana's were done at NIH but here was one test not done and only done when a hearing loss is present and when a loss was detected they ran the genetic test by scrapping the inside of her mouth/cheek. As far as your doc , I would print out info from the files section. mom to breana 4 Phone numbers I was wondering if anyone could provide me with the phone numbers of the Doctors that are in this group that deal with . I would like to give my daughter's doctor the numbers so that he can call them and perhaps educate himself a bit more. Her doctor is doing a great job, but I also want to tell him about the genetic testing. I don't know much about that, or how it's done. Do you need both parent's to do that? If someone could email me with more information, I would appreciate it. Thank you, Caryn single mother to na, 4 vicarmay@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2005 Report Share Posted March 18, 2005 Hi Caryn, My pediatrician was willing to join this discussion group herself, which she could do anonymously. That way she could read any documents and/or the discussions if she chose to. There also is a list (in the document section, I believe) that has a list of doctors familiar with fever disorders. Val, Mom to Kira, fever-free for 5 months now Phone numbers I was wondering if anyone could provide me with the phone numbers of the Doctors that are in this group that deal with . I would like to give my daughter's doctor the numbers so that he can call them and perhaps educate himself a bit more. Her doctor is doing a great job, but I also want to tell him about the genetic testing. I don't know much about that, or how it's done. Do you need both parent's to do that? If someone could email me with more information, I would appreciate it. Thank you, Caryn single mother to na, 4 vicarmay@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2005 Report Share Posted March 18, 2005 If a doc or medical professional wants to join this list, and remain anonymous, they can contact me... It is sometimes difficult when a physician joins this group and parents begin to ask for medical advice. So please feel free to give them my email address or when joining to send a comment when requesting approval, Careen, also there is a file section with a wealth of information.,... includes contact info for docs who specialize in fever disorders and has the information for NIH and the current research that many of our children are now participating in... and phone number for Beverly the contact nurse who works with Kastner.... at NIH. Fran Fran A Bulone Mom to ph 5 yrs old Waxhaw, NC Owner & Moderator Group Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2005 Report Share Posted March 18, 2005 Thank you everyone for your responses and information!!! Caryn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2009 Report Share Posted December 17, 2009 Hi all, I love the fact that everybody is offering support but if you want to send an email, click on the persons actually email or respond to the person alone and send it. Otherwise, you are broadcasting it to everybody out there. Thanks, C Quote Link to comment Share on other sites More sharing options...
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