Guest guest Posted October 30, 2002 Report Share Posted October 30, 2002 Hi Paige, I posted an extended info about the Genzyme test last week. It's around 200$$ compared to the 325 of Ambry and tests for 90 mutations compared to the 1,000 of the Ambry test. I am afraid there is no cheaper one on the market. It's easy to look for the one mutation that you gave to your son, but to find the other is more difficult. And if you really have CF (hope NOT) it's probably one of the rarer mutations. I would ask your CF center if you could take part in a study where CF carriers are tested for free. Or maybe one student needs the info for a thesis of doctorate and will sponsor the test. Just a thought. Peace Torsten Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2002 Report Share Posted October 30, 2002 Hi Paige, I posted an extended info about the Genzyme test last week. It's around 200$$ compared to the 325 of Ambry and tests for 90 mutations compared to the 1,000 of the Ambry test. I am afraid there is no cheaper one on the market. It's easy to look for the one mutation that you gave to your son, but to find the other is more difficult. And if you really have CF (hope NOT) it's probably one of the rarer mutations. I would ask your CF center if you could take part in a study where CF carriers are tested for free. Or maybe one student needs the info for a thesis of doctorate and will sponsor the test. Just a thought. Peace Torsten Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2002 Report Share Posted October 30, 2002 Hi Paige, I posted an extended info about the Genzyme test last week. It's around 200$$ compared to the 325 of Ambry and tests for 90 mutations compared to the 1,000 of the Ambry test. I am afraid there is no cheaper one on the market. It's easy to look for the one mutation that you gave to your son, but to find the other is more difficult. And if you really have CF (hope NOT) it's probably one of the rarer mutations. I would ask your CF center if you could take part in a study where CF carriers are tested for free. Or maybe one student needs the info for a thesis of doctorate and will sponsor the test. Just a thought. Peace Torsten Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2003 Report Share Posted September 3, 2003 Hi Paige Just wondering how your surgery went and if you are up and about yet?? Shona ______________________________________ This e-mail may contain confidential information and may be legally privileged and is intended only for the person to whom it is addressed. If you are not the intended recipient, you are notified that you may not use, distribute or copy this document in any manner whatsoever. Kindly also notify the sender immediately by telephone, and delete the e-mail. When addressed to clients of the company from where this e-mail originates ("the sending company ") any opinion or advice contained in this e-mail is subject to the terms and conditions expressed in any applicable terms of business or client engagement letter . The sending company does not accept liability for any damage, loss or expense arising from this e-mail and/or from the accessing of any files attached to this e-mail. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2003 Report Share Posted September 24, 2003 You've probably gotten other responses that are similar, but here's my 2 cents. I'm also a neonatal nurse. You may never know for sure if your son has RSS or not, but like Jodi says, they are basically treated the same way. My son was diagnosed at about 15 months. The first endo we went to said he didn't have it, the geneticist said he did and we now go to the famous Dr. " H " who says she is not convinced whether or not he has it. I have access to books, etc about genetics and I felt he probably did have it. He looked just like the pictures in the books when he was younger. The most important thing right now for your son is to keep him healthy. Whether he is small from RSS or " just " SGA , the doctor needs to keep him gaining weight and growing. The reflux and milestones may just be related to his prematurity, they are both common with former preemies. It's great that he's ahead with many of the milestones. My ?RSS son,Nate, at 6 months was 11 pounds and 24 inches. His twin brother was 16-4 at the same age. They were 3-10 and 3-15 at birth at 37 wks respectively. I know that the not knowing is hard but hang in there! Liz-Mom of Nate(?RSS)and Sam-5 yr old twins and Arianna-3-1/2 yrs old going on 30! Quote Link to comment Share on other sites More sharing options...
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