Guest guest Posted February 3, 2004 Report Share Posted February 3, 2004 Hi, I was wondering if anyone had been given the option of having further testing for their CF kid or themselves by Genzyme? I had requested that our amniotic fluid be sent to Genzyme because they found both of 's mutations (one common and one less common) Genzyme wanted 's blood to test as well as the fluid and my blood, but 's blood test wouldn't be covered by insurance ($300.00 extra is too steep right now for us), so we are just doing mine and the baby's amniotic fluid. However, Genzyme offered to do their new test on for free. We go on Thursday to the place where they did the amnio and they will let her do a " swish and spit " type of collection of her cells from her mouth. The hospital then sends it right back to Genzyme and they will do the new test on her. I don't know why they want to do it, but they are not charging for it and they say that since the technology has changed in the last few years that they will get more info, and it will be helpful with the amnio info......... Has anyone heard of this or done it? What can it tell us that is different than the " Genzyme 70 " test that they used to do? somewhat confused, but willing to do it if it will help to determine things for the new baby Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2004 Report Share Posted February 3, 2004 I could not help myself and reply to your post publicly! When I gave birth to my daughter (Sept 2, 2003)we did not know if she had CF or not. Genzyme was the company who was to do the testing. We used the cord blood. Without going into detail, I will tell you it was one nightmare followed by another. They did not have their instructions/requirements in order. What should have taken no more than 2 weeks took one month and 5 days!!!!!!! That is a LONG time wondering if your child has CF or not, questioning every poop, cough, sneeze, etc. Genzyme was completely incompetent and not sympathetic to our situation! Let's face it, they are a business and can be shopped just like shopping different grocery stores. Use another store! If you still chose to get the free test – MAKE THEM PUT IT IN WRITING ON THEIR LETTER HEAD. Not happy with Genzyme, Christen mom to 4 wcf and Peyton 5 months no cf > Hi, > I was wondering if anyone had been given the option of having further testing for their CF kid or themselves by Genzyme? I had requested that our amniotic fluid be sent to Genzyme because they found both of 's mutations (one common and one less common) Genzyme wanted 's blood to test as well as the fluid and my blood, but 's blood test wouldn't be covered by insurance ($300.00 extra is too steep right now for us), so we are just doing mine and the baby's amniotic fluid. However, Genzyme offered to do their new test on for free. We go on Thursday to the place where they did the amnio and they will let her do a " swish and spit " type of collection of her cells from her mouth. The hospital then sends it right back to Genzyme and they will do the new test on her. I don't know why they want to do it, but they are not charging for it and they say that since the technology has changed in the last few years that they will get more info, and it will be helpful with the amnio info......... > Has anyone heard of this or done it? What can it tell us that is different than the " Genzyme 70 " test that they used to do? > > somewhat confused, but willing to do it if it will help to determine things for the new baby > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2004 Report Share Posted February 5, 2004 , Genzyme tested our daughter using the buccal swap technique when she was first born. They did the sample in the NICU (she had meconium ileus). It took about 2 weeks to get the results and they found the mutations without difficulty. We were pleased with them. With my pregnancy this time we did CVS testing and the cells all went to Labcorp because we needed to check for CF and alpha-1 antitrypsin deficiency, plus the basic chromosomes. There is one guy there who does all the stuff and we didn't want the sample to be sent separate places. I don't think you'll have any trouble with Genzyme. I know the wait is so very hard. That was absolutely the worst part. I hope for you a happy outcome. Keeley Mom to Hadley, 3.5yrs. nocf & noA1AT, Leila, 18m. wcf & A1AT, and baby boy due early June, nocf & noA1AT > Christen, > I am so sorry that you had such a hard time with Genzyme. I only requested them because one of the mutations that has is not in the most common 25 and they found it with their first test. Unfortunately, they already have my blood and the amniotic fluid, so since they are offering this test for for free, I guess we will go and have it too. I will ask for confirmation that 's test is being done for free though! I hope we have a better outcome than you did. I wish I had known about this before we requested them for the test, I would have checked into other tests. (they did forget to tell the genetic counselor that they needed my blood too so I had to go do that separately,) I let you know what happens....... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2004 Report Share Posted February 5, 2004 What should have taken no more > than 2 weeks took one month and 5 days!!!!!!! My son's Genzyme test took twice as long to get the results back as it did to get the Ambry test results. We live not more than 50 miles away from Genzyme so you would think it wouldn't take any time at all. They caught one of my son's mutations. jan Quote Link to comment Share on other sites More sharing options...
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