Guest guest Posted August 6, 2003 Report Share Posted August 6, 2003 Bring it up at CF clinic, If your older child was failure to thrive, has lung issues, and has other common CF problems- it is possible that he has CF. They can do genetic testing. Also talk to his pediatrician about it- they can order the testing. I would ask for testing for as many mutations as possible since, from what I understand, most people who have CF but have negative sweat tests have the less common mutations. I hope he doesn't have it. is it possible ok. big questions!!!!! I was reading a message from I believe it was Polly. ( waiting for her daughters diagnosis) and it really got me thinking. I have a son Colgan 7 months w/cf. I also have a son Maxwel. He is almost 5 and is almost spitting image of a cfer. He was failure to thrive all through childhood. Actually still really is so small. At 2 months shy of 5 he weigh 29 lbs and is about 36 inches tall. He has boughts with his breathing ( for a while he was said to have RAD but since has been taken off the the meds. ) Anyways, he has had two sweat tests and they both came back negative. The thing that makes me wonder is if this family is waiting on more genetic testing. Is there a chance that the sweat tests could be wrong? Has anyone been through this or well know anyone who might offer advice. I am sorry that at this moment I can not remember who is dealing with this right now. I definately have you in my thoughts and hope with all of my heart that you get your answers and that it is not cf. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2003 Report Share Posted August 6, 2003 I have three daughters and two of them a have CF all three of my daughters are not heavy in anyway. My middle child does not have CF and was tested through a sweat test. We did not do a DNA because both of my two daughters that have CF had the most awful smelling runny stools and my middle child had very normal stools. She does complain of her stomach hurting at times and she is a skinny little thing but they also says people with one gene can sometime have some CF symptoms but to me the stools is a big indicator that they are not digesting there food and something is wrong. But if doing a DNA would make you feel better I would do it. Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2003 Report Share Posted August 6, 2003 This is always so hard to deal with by everyone who comes in this rea...( NOT COMPLETE DX ) YES, there are other tests AND sweat tests CAN be wrong. Also , the DX might not be of any gene that they have recorded .. -considered unknown. Ask the clinic where, near you, that the other tests may be preformed. There is a cost . I am not sure now how much. There are many on the lists that have had them done. I will hope they will jump in here & tell you their experience & where they had theirs done. It isn't easy to treat what isn't a name to you/them . I hold you & your precious family in my special thoughts as well. LOVE & HUGS, grandmoMBEV is it possible ok. big questions!!!!! I was reading a message from I believe it was Polly. ( waiting for her daughters diagnosis) and it really got me thinking. I have a son Colgan 7 months w/cf. I also have a son Maxwel. He is almost 5 and is almost spitting image of a cfer. He was failure to thrive all through childhood. Actually still really is so small. At 2 months shy of 5 he weigh 29 lbs and is about 36 inches tall. He has boughts with his breathing ( for a while he was said to have RAD but since has been taken off the the meds. ) Anyways, he has had two sweat tests and they both came back negative. The thing that makes me wonder is if this family is waiting on more genetic testing. Is there a chance that the sweat tests could be wrong? Has anyone been through this or well know anyone who might offer advice. I am sorry that at this moment I can not remember who is dealing with this right now. I definately have you in my thoughts and hope with all of my heart that you get your answers and that it is not cf. ------------------------------------------- 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 August 6, 2003 Report Share Posted August 6, 2003 , have there been many cases of children who do have cf with negtive sweat tests ( at least that you know of) ??????? huge concern thanks Ashauna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2003 Report Share Posted August 6, 2003 Thanks Bev, we clinic on the 11th and it definately will be a topic of discussion Ashauna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2003 Report Share Posted August 6, 2003 Thanks for the info. I think that I may have them run the DNA I just am not sure and don't think I will be until they do Ashauna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2003 Report Share Posted August 6, 2003 I'm not sure about numbers or anything but I have been told that it happens. Also some people are diagnosed on symptoms alone and not a sweat test, but less often now. I would request the genetic testing anyway, since he has other symptoms. Re: is it possible , have there been many cases of children who do have cf with negtive sweat tests ( at least that you know of) ??????? huge concern thanks Ashauna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2003 Report Share Posted August 6, 2003 GREAT. they should be able to get it set up for you even. Good luck. Be positive & don't take no from them either. REMEMBER WHO IS WRITING THE CHECKS:):) LOVE & HUGS, grandmomBEV RE: is it possible Thanks Bev, we clinic on the 11th and it definately will be a topic of discussion Ashauna ------------------------------------------- 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 August 6, 2003 Report Share Posted August 6, 2003 thanks I appreciate your help with this matter. hope you and your family are doing well tonight. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2003 Report Share Posted August 6, 2003 NO kidding about the checks. We have really racked up some bills. Fortunately we are military so as of right now do not see all that much of them. I do not know what I would do. I emipithize with those who have to. Let him up there be with them and us in the future after military Hope that you have a good night. How is your grand daughter doing? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2003 Report Share Posted August 7, 2003 Hi All, Speaking of neg. sweat tests, a friend of mine has all the cf symptoms. She has recurrent lung infections with pseudomonas, etc; is now of normal weight due to steroids, etc, but was once underweight; is pancreatic insufficient; has arthritis; diabetes due to her pancreatic insufficiency; has sinus problems, including polyps, etc Because sweat tests have resulted in neg. scores clinic docs. refuse to see her. This girl even has lungs that fit the image of CF. Her lungs have bronchiectasis, are hyperinflated, have atelectasis, etc. Her FEV1 is in the 20s. Clinic team has ignored this poor woman. Her doc. has ordered genetic testing, but clinic docs. told him it was a waste of time, since the sweat test scores were neg. They told him that they don't want to treat this girl. Sweat tests are not always accurate. Mindy ______________________________________________________________________ Post your free ad now! http://personals.yahoo.ca Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2003 Report Share Posted August 7, 2003 In a message dated 8/6/2003 6:45:35 PM Eastern Daylight Time, Ashauna_and_@... writes: > have there been many cases of children who do have cf with negtive > sweat tests ( at least that you know of) ??????? > Yes my kids!!! Remember they don't know every mutation! Do blood DNA testing. Rosemary in NY with 3 children (13, 10.6 and 6.6) with CF. I have a dog named TOBI and have coined the phrase " BREATHE DAMMIT " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2003 Report Share Posted August 7, 2003 Mindy, What an outrage. I really hope that I do not have to hear that just because one test says negative they will not do another. I sure hope that they do the test and that if it comes back positive she takes that right up there and throws it in the doc's face. They would have a " POSTAL MOTHER " on their backs. I will keep your friend in my thoughts. Keep us posted please. Any information that I could use to help me with my oldest would be great. I hope it is not but then perhaps she would just like to know what in the world is going on with her. Best wishes. Thanks Ashauna Quote Link to comment Share on other sites More sharing options...
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