Guest guest Posted March 28, 2008 Report Share Posted March 28, 2008 Definitely check with the FMF group, but I THOUGHT that FMF works differently than most other genes because a person CAN be effected if they only have one gene for it. For us we went through all the PFS genetic tests, but the FMF took the longest to come back because Gene DX said that finding FMF takes a closer look because the genes for FMF behave differently thank the rest and it is sometimes tricky to identify. I know there is more info about this on the NIHs website, but I have a hard time following the terminology. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2008 Report Share Posted March 28, 2008 Definitely check with the FMF group, but I THOUGHT that FMF works differently than most other genes because a person CAN be effected if they only have one gene for it. For us we went through all the PFS genetic tests, but the FMF took the longest to come back because Gene DX said that finding FMF takes a closer look because the genes for FMF behave differently thank the rest and it is sometimes tricky to identify. I know there is more info about this on the NIHs website, but I have a hard time following the terminology. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2008 Report Share Posted March 30, 2008 will pray for you angie that this can come to some sort of answer for you! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2008 Report Share Posted March 30, 2008 will pray for you angie that this can come to some sort of answer for you! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2008 Report Share Posted March 30, 2008 will pray for you angie that this can come to some sort of answer for you! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2009 Report Share Posted March 19, 2009 Hi Debbie. Thanks for the info on www.genedx.com. I have herd that they are who most people use. Did you go through your pediatrician or a specialist. I really want to get this done, but need to convince our doctors of it. I just am having a hard time convincing them that this is needed and worth the cost. If anyone has any words of advice on convincing doctors that genetic testing is important, I would love to hear them. I need as much to back me up as I can before I go after the genetic testing again. Thanks, Pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2009 Report Share Posted March 20, 2009 Hi Pam--We learned about the testing from our specialist--but, our pediatrician is the one who took the sample--the results are being sent to the specialist. To get a kit, you don't need a prescription, or to pay anything. Your regular pediatrician can do the test (they give them all the directions). I sent it back to the company--and I had to pay (by credit card)--although, we checked w/ our insurance, and they will cover it (Aetna). The only catch, is that they will only give the results to a Dr. Our Dr (Dr Von Shaven at UCSF--san francisco) wants the genetic testing done , mainly to rule out a few of the different types of the syndrome- I think once she gets the results , she will feel comfortable treating my son more aggressively. Good luck--Debbie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2009 Report Share Posted March 25, 2009 Debbie, Thanks so much for the info on the genetic testing. You make it sound so much easier than I thought it would be. Our specialist won't agree to it, but our allergist/immunologist probably will. How great...we have AETNA too. What did you tell them to get them to cover it? Did the doctor have to push it at all to get them to cover it or did you just call and ask? I'm so excited that you shared. Thanks a ton...I am encouraged! Hope yours comes back soon! Pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2009 Report Share Posted March 27, 2009 Hi Pam-- With regard to the Aetna question--Our Pediatrician's office called Aetna,and dealt w/ them. We have the HSA thru Aetna (one of those new Health Spending Accounts--that have a really high deductible. ) Good Luck! Debbie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2009 Report Share Posted March 27, 2009 Hi Pam-- With regard to the Aetna question--Our Pediatrician's office called Aetna,and dealt w/ them. We have the HSA thru Aetna (one of those new Health Spending Accounts--that have a really high deductible. ) Good Luck! Debbie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2009 Report Share Posted October 1, 2009 I think it is up to the doctor, we had all of the PFS genetic tests done. This was done via blood draw and they had to take ALOT of blood. Would have been nice if they had offered a cheek swab instead. Gene DX did ours. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2009 Report Share Posted October 1, 2009 We did it through blood draws. Our Dr did it in her office and were not given an option as to the method. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2009 Report Share Posted October 1, 2009 We did it through blood draws. Our Dr did it in her office and were not given an option as to the method. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2009 Report Share Posted October 2, 2009 We weren't given a choice. We did blood and were told it had to go a special lab that not all facilities have a contract with so we went to Children's in Pittsburgh. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2011 Report Share Posted January 19, 2011 Does anybody know of a lab that does genetic tests for gluten sensitivity? MacGilchrist Quote Link to comment Share on other sites More sharing options...
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