Guest guest Posted February 14, 2004 Report Share Posted February 14, 2004 Hi Angie, borderline sweat tests are not so rare with CF as some doctors think. But still CF is a rare disease (1 in 2.500 births), so there is a good chance that your son's problems are something else and less severe. One question is, what kind of lung infections does your son have? Bacterial infections with bugs like pseudomonas aeruginosa or staphylococcus aureus are typical for CF kids and very unusual for other kids so young. Peace and good luck Torsten, dad of Fiona 6wcf and Sebastian 9mo wocf BTW Happy Birthday to CFparents!! The list is 5 years old as of today! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2004 Report Share Posted February 14, 2004 WELL HI , I Haven't seen you on line in along time. How are you & that lovely growing family . It does keep you busy, doesn't it ? BUT, they are truly so much fun. It was nice to see your post. Have wonderful weekend. LOVE & HUGS< GrandmomBEV Re: Borderline Sweat Test Hi Angie, borderline sweat tests are not so rare with CF as some doctors think. But still CF is a rare disease (1 in 2.500 births), so there is a good chance that your son's problems are something else and less severe. One question is, what kind of lung infections does your son have? Bacterial infections with bugs like pseudomonas aeruginosa or staphylococcus aureus are typical for CF kids and very unusual for other kids so young. Peace and good luck Torsten, dad of Fiona 6wcf and Sebastian 9mo wocf BTW Happy Birthday to CFparents!! The list is 5 years old as of today! ------------------------------------------- The opinions and information exchanged on this list should IN NO WAY be construed as medical advice. PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2004 Report Share Posted February 14, 2004 Dear Angie- Welcome. While we hope that you don't have to become a member of our 'club' here, we will help you in any way we can with information and support. A 46 is rather borderline but your son's other symptoms are a bit more troubling. Unfortunately, because cf is still a rather rare disease,many pediatricians do not see a lot of it and are somewhat unfamiliar with some of the more elusive symptoms like weight issues etc. The repeated lung infections are a concern. On that basis alone, I think I would ask the pediatrician to authorize a cf gene test at a local cf center. While those tests aren't always 100% definitive, they tend to be much more reliable than the sweat test. Where do you live? You can go onto the cff website at www.cff.org and find a list of local cf care centers. I have a nine year old too and I know how much you must be worrying. Keep us informed and ask as many questions as you'd like to. Debi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2004 Report Share Posted February 14, 2004 I would opt for a repeat sweat test and hope that it comes back normal ... but I would want to make sure it was done through an accredited/certified CF Center. My son (now 17 with CF) had a borderline sweat test ( " in the grey area " , they called it ...not CF but not normal range, either). It was done at a smaller hospital that had a small CF clinic but the hospital did not use the best type of test available (reliability of different brands and types of equipment for sweat tests vary) and the technician was inexperienced and did not do the test properly ... did not take as many readings as she should have considering the results she was getting, among other things. We insisted on going to a large CF Center for a repeat sweat test and got results we did not want but needed. A third test at the larger center confirmed the second one, and confirmed the CF diagnosis. Even the CF Center seemed surprised with the diagnosis because my son 'appeared so healthy'. He was still on the weight charts (but he had plateaued in weight and was having frequent, explosive bowels movements, appeared to be in pain after feeding, and had a salty aftertaste if I licked his forehead ... all things our family doctor told me were 'normal'). He did not start having serious lung infections until he was about 12 - but had some staph infections earlier that were kept under control with continuous oral antibiotics. I do not want to scare you but I do want to make sure you can trust the sweat test. I think there are many who will echo that it should be done at a CF Center to increase the chances of it being reliable. Best of luck. I will hope for a negative sweat test but also hope your son can find a solution for the problems he is experiencing. M Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2004 Report Share Posted February 14, 2004 No surprise that I agree with ; they did four: two on each arm on me, and then a repeat two weeks later, and then the first dna tests when availab le, just found out what I had always known--cystic fibrosis, but you do not want to be in doubt, if that is possible! I, too, would opt for a cf center; with a letter of recommendation from the child's physician, this is free in Califor nia--the sweat test, not the dna test! Good luck, n Rojas Re: Borderline Sweat Test I would opt for a repeat sweat test and hope that it comes back normal ... but I would want to make sure it was done through an accredited/certified CF Center. My son (now 17 with CF) had a borderline sweat test ( " in the grey area " , they called it ...not CF but not normal range, either). It was done at a smaller hospital that had a small CF clinic but the hospital did not use the best type of test available (reliability of different brands and types of equipment for sweat tests vary) and the technician was inexperienced and did not do the test properly ... did not take as many readings as she should have considering the results she was getting, among other things. We insisted on going to a large CF Center for a repeat sweat test and got results we did not want but needed. A third test at the larger center confirmed the second one, and confirmed the CF diagnosis. Even the CF Center seemed surprised with the diagnosis because my son 'appeared so healthy'. He was still on the weight charts (but he had plateaued in weight and was having frequent, explosive bowels movements, appeared to be in pain after feeding, and had a salty aftertaste if I licked his forehead ... all things our family doctor told me were 'normal'). He did not start having serious lung infections until he was about 12 - but had some staph infections earlier that were kept under control with continuous oral antibiotics. I do not want to scare you but I do want to make sure you can trust the sweat test. I think there are many who will echo that it should be done at a CF Center to increase the chances of it being reliable. Best of luck. I will hope for a negative sweat test but also hope your son can find a solution for the problems he is experiencing. M ------------------------------------------- The opinions and information exchanged on this list should IN NO WAY be construed as medical advice. PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2004 Report Share Posted February 14, 2004 Dear Angie, No problem, we let anyone join, don't we? LOL. Now I know this isn't funny. I think you should ask to have your son genetically tested. Why wait until April for another sweat test? I personally would go nuts waiting that long. The genetic test only takes about 2 weeks to come back and if sent to Ambry will be as accurate as it gets. Good luck and I hope your son doesn't have cf too. But like I told the last person waiting for a diagnosis, it isn't the worst thing in the world. My daughter is 20 and doing great. We have 2 senior citizens on this very list. Do let us know what happens. love, M mom of Nick age 21 nocf and age 20 wcf PS I like your name Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2004 Report Share Posted February 14, 2004 Hi Tammy, I'm glad to hear JW is doing better. I'll continue to keep him in my special thoughts. Let us know how he is when you can and you take care of YOU too. love, M Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2004 Report Share Posted February 15, 2004 In a message dated 2/15/2004 9:59:08 PM Central Standard Time, angim74@... writes: What was going on to make your pediatrician suspect CF? What were your child's symptoms? Just a quick question....I also have two other younger children....if one is diagnosed, do they generally test the other children? Angie Yes my oldest who was 6 at the time when she was diagnosed and when she had a positive sweat test they asked us if we wanted the other two tested and I said I am almost sure that our youngest has it. I was not even going to have my middle child tested but I think I wanted that peace of mind knowing in fact she did not have CF so I had her tested too. So it is your choice but I would just to make sure. Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2004 Report Share Posted February 15, 2004 > > In California, that is considered " likely diagnostic " for cf as the average of 20-25 is so much lower than that. No one wants a child to have cf I never knew that (average is 20-25) jan 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.