Guest guest Posted September 16, 2003 Report Share Posted September 16, 2003 Hi.. My name is Rhonda and my little boy is going through testing for CF. He just turned 20 months on the 6th. I am looking for people that have experience with this that I can ask questions to. I live in Kentucky and have been married for 14 years this past August. Jordan is our miracle baby because we tried the entire 14 years to conceive him. If any of you can help me out please email me at thearthurs3@... Thanks! Rhonda Check out my new online business!! They are AWESOME! ***Photo Magnets*** http://www.heavenstreasurechest.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2003 Report Share Posted September 16, 2003 ok obviously you cant send any pictures through this so go back to the website www.picturetrail.com/heavensent831 and look in the ebay album. I put it there. Rhonda Check out my new online business!! They are AWESOME! ***Photo Magnets*** http://www.heavenstreasurechest.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2003 Report Share Posted September 16, 2003 they did some blood work but I dont' know the results of that yet and he had the sweat test which tested at 80 Rhonda Check out my new online business!! They are AWESOME! ***Photo Magnets*** http://www.heavenstreasurechest.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2003 Report Share Posted September 16, 2003 It didn't come up .Can you do it as an attachment LOVE & H GRDMBEV Re: Intro I don't know if this will work or not. I have put a picture in this email. I am new to this kind of stuff. Hopefully it will work. Rhonda Check out my new online business!! They are AWESOME! ***Photo Magnets*** http://www.heavenstreasurechest.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2003 Report Share Posted September 16, 2003 Hi Rhonda, Welcome to the group! I am sorry that your little guy is sick and I hope it is not CF. If it is, you have found a wealth of knowledge right here. Questions? Ask away. Mom of almost 5, AKA The Queen of the Universe Read about us at http://groups.msn.com/TeamJane Intro Hi.. My name is Rhonda and my little boy is going through testing for CF. He just turned 20 months on the 6th. I am looking for people that have experience with this that I can ask questions to. I live in Kentucky and have been married for 14 years this past August. Jordan is our miracle baby because we tried the entire 14 years to conceive him. If any of you can help me out please email me at thearthurs3@... Thanks! Rhonda Check out my new online business!! They are AWESOME! ***Photo Magnets*** http://www.heavenstreasurechest.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2003 Report Share Posted September 16, 2003 Hi Rhonda, Our lives are very parallel to each other. Zach turned 19 months on the Aug. 8th. He was diagnosed with cf at 13 months old. We will celebrate our 11th anniversary this October and Zach is our only child. We tried for a long time too and then to find out your baby might have CF can be extremely overwhelming. Just know that you can manage this and we are all here for you if you have any questions. Jordon is sooo cute! You can see Zach at www.dawsonland.net Sara > Hi.. > > My name is Rhonda and my little boy is going through testing for CF. He just turned 20 months on the 6th. I am looking for people that have experience with this that I can ask questions to. I live in Kentucky and have been married for 14 years this past August. Jordan is our miracle baby because we tried the entire 14 years to conceive him. If any of you can help me out please email me at thearthurs3@z... Thanks! > Rhonda > Check out my new online business!! They are AWESOME! > ***Photo Magnets*** http://www.heavenstreasurechest.com > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2003 Report Share Posted September 17, 2003 Welcome ! Boy you have thrown the million dollar question! We have a 10 year old wcf and 2 younger siblings both boys, one is 7 the other one is 3. My 7 year old has had a very hard time dealing with all the attention my 10 year old gets. Since diagnosis, May 2002, his personality has changed so much. He has become very destructive, hits his brother and sister, pretty much has become a bully. Thankfully, he is like that only at home, at school he is a doll. I have talked to him, I have made time to spend alone with him, but jealousy is eating him up. Well, I wish I had an answer for you but I think it is something that only growing up will help. Again a warm welcome. mom of a 10 wcf, Venanzio 7 nocf, Pepe 3 nocf > Greetings, > > I just subbed today and wanted to take a moment to briefly introduce myself. My > name is and I am the mother of two little girls, 6 and almost 4. My > eldest, Jasmine, was diagnosed with cystic fibrosis at 15 months. Jasmine's > lungs are pretty sick and she's being listed at Children's Hospital, LA for a > transplant. We're hoping to do living donor but are having a hard time finding > another person to donate (Jasmine is type O, like me, but we can't find another > likely candidate... we're still working on it). Jasmine's sister, le, > is untested but also totally asymptomatic. I'd be pretty surprised at this > point if she was diagnosed. > > Jasmine's in the hospital right now for a " tune-up " but we're excited because on > Monday we're going to Florida for our Make-A-Wish wish. We decided (with the > doctors) to bend the rules a bit and let her go without home IV antibiotics this > time around... at least until we get back the following Monday. Then we go back > to the docs to see if she needs to be back on the IV meds and on Wednesday she > goes in to get a " peg " for night feedings. We might get a permanent IV port at > the same time, but we're waiting for confirmation on that. I'm really > struggling with these two little additions to my child's body, which is already > ravaged by CF... I hate the idea of having permanent reminders of how sick she > is. Jasmine seems to be fine with it, though I don't know how she'll feel when > it's all over. I know this is for the best and both my husband and I are making > sure we put the most positive spin on it as possible, but it's still bugging us. > I'm straining my poker face. <g> > > My concern at this point... and I'm hoping that some of you can offer some > suggestions... is that my younger daughter is having a really horrible time with > this hospitalization. She misses Jasmine terribly and cries whenever we have to > leave, but she's also very jealous of all the attention Jasmine gets. Jasmine > doesn't like sharing her hospital spotlight and is sort of mean to her whenever > we go visit (my husband spends the night with her and we -- le and I-- > visit daily). I've heard that non-CF siblings sometimes feel bitter about being > pushed aside even when they know there's nothing anyone can do about it... but > those kids are generally old enough to articulate their emotions. What do I do > with a child who's almost four and *can't* put these feelings into words? How > do you all deal with your non-CF children... make them feel as loved and help > them understand why you spend so much time with your CF children? As you can > tell, I'm really angsting over this. ::wry grin:: > > Peace, Balance and Blessings to You, > > *********************************** > rowan_witch@u... > AOL IM: RwnWitch > Yahoo Pager: Aine_of_Knockainy_Hill > > " god help you if you are a phoenix > and you dare to rise up from the ash > a thousand eyes will smolder with jealousy > while you are just flying back " > ~Ani DiFranco Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2003 Report Share Posted September 17, 2003 Rhonda, Welcome to the group. I hope that you and Jordan get the answers that you are looking for. Please keep us posted. Gale > Hi.. > > My name is Rhonda and my little boy is going through testing for CF. He just turned 20 months on the 6th. I am looking for people that have experience with this that I can ask questions to. I live in Kentucky and have been married for 14 years this past August. Jordan is our miracle baby because we tried the entire 14 years to conceive him. If any of you can help me out please email me at thearthurs3@z... Thanks! > Rhonda > Check out my new online business!! They are AWESOME! > ***Photo Magnets*** http://www.heavenstreasurechest.com > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2003 Report Share Posted September 17, 2003 Rhonda; It is not you who is confused. It is the person who is referring to the sweat test result as " borderline high " who is confused. Perhaps he or she is thinking that 80 is not that far off of 60 so that is why the term 'borderline' was applied. It is not uncommon to have readings well over 100 but the particular sweat test reading is NOT predictive in any way of the severity of the CF at the time, or of the course the disorder will take. It is simply an indication that one is either positive or negative for CF. People who do NOT have CF are rarely over 40 in a sweat test. Between 40 and 60 is seldom a valid result and would require further investigation. Perhaps the person is applying the term in a misguided effort to 'soften' the blow of the result. More likely, the person just is not sufficiently familiar with the test and with CF to know better. Was it a technician or a doctor who used the term 'borderline high'? If the test was at a local hospital and not a CF Center, they probably are not used to doing the test frequently and CF is rare enough that they may rarely come across a positive result. There are various test kits available for doing sweat tests and not all hospitals use the most reliable ones. It sounds like you have already educated yourself to know more about the sweat test and CF than the person who gave you the information about the test result. You said that your son has already had blood work taken so I assume that is to determine the particular mutations that your son may have. It is hard to be patient when you have been given such stressful news but DNA testing from the bloodwork should soon give you further information. DNA analysis does not always give a definitive answer but it most likely will confirm if your son has CF. You will want to check how many mutations were searched in the DNA analysis if that test is not definitive for you. You can take your next steps from there and we'll be with you all along. M Re: Intro no it was at our local hospital. See I am so confused as to why they are calling his borderline high. ARGH anyone have any idea? Rhonda Quote Link to comment Share on other sites More sharing options...
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