Guest guest Posted December 2, 2003 Report Share Posted December 2, 2003 Patty, Please, do not do that to yourself. I know several adult people who are double delta f508 and doing quiet well, n has one of the buggers, I won't tell how old she is, I may be stone later on, ;-) just joking. The biggest reason that I wanted to know about mutations is because of the different types of treatment, other than that, it is nothing more than information. Different mutations react to different treatments. If you are trying to figure out the course of the disease by mapping the mutations of your child, it would be torture, because not even siblings with the same mutations present the disease in the same way. I hope this helps, > Hey, can anyone help me on this mutation thing were all reading > about.All I remember is Tyler's old cf nurse coordinator said Ty has > delta f508.Is that the worst one or something(gosh plz dont let > there be more I need to worry about, I dont know where I'll fit it > into my " worry schedule " )?So far he's never had to be admitted for > lung junk, Thurs. will be the 1st time, and the cf coor. told me its > because he just had his gallbladder out and the anestesia(sorry i > know i really hacked this word) had this effect on his lung which is > not out of the ordinary.His g.i. problems on the other hand are > horrific.He's always got some kind of liver, enzyme, gallbladder, > whatever issue going on, but never anything too severe. > And while were at it, how come we can clone a @*% & #$ cow but we > cant find a cure for this nightmare of a disease.Is there anything > even close coming?ANY hope?I mentioned in the previous post how > awful i am at sugar coating anything, so there just isnt any talk of > a cure in our home.I have just tried to keep up with the here and > now, but really, where are they(whomever " they " might be) going with > this?I heard something about gene therapy is this the one you would > have to go be admitted every 3 mos. or so for?I'll tell you, I > REALLY miss the children's hospital in Michigan, this one here in > Florida just seems like, well, I guess not so on top of things as up > north. > Sorry I keep writing so much but evidently I've had more questions > and concerns than I thought. > > Patty, mom to Ty, 8, wcf & 2wocf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2003 Report Share Posted December 2, 2003 Piper also has the delta F508 and G542X. I read in Orenstein's book, in the section about mutations and the only thing that was mentioned as far as symptoms of Delta f508, was pancreatic insufficiency. I know that Piper has had a lot of problems with weight gain and absorption, so i guess I just attributed that to the gene. Katy Mom to Austin 4 no CF & Piper 16 months w/CF Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2003 Report Share Posted December 3, 2003 Patty, My Son almost 10 has both genes DeltaF508. The CF Dr.'s last comment was, that they would like to know what else is going on inside his body that is keeping him so healthy. He also has never been hospitalized, had a mild pneumonia once 5 years ago and his PFTs are always over 100%. He does get sinus infections, usually cleared by a round of oral antibiotics, a few times a year. He also has Crohn's disease and does suffer some digestively. Lots of stomach aches, bloating and reflux. But his lungs (knock wood) have been great. So keep up the therapy like we do so they stay that way. Good luck Mom to Josh 9 1/2 wcf & Crohn's and 4 1/2 nocf but wants to do therapy for his brother. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2003 Report Share Posted December 3, 2003 Patti, What clinic do you go to in Florida? Angie tell you, I > REALLY miss the children's hospital in Michigan, this one here in > Florida just seems like, well, I guess not so on top of things as up > north. > Sorry I keep writing so much but evidently I've had more questions > and concerns than I thought. > > Patty, mom to Ty, 8, wcf & 2wocf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2003 Report Share Posted December 3, 2003 what do you do in regards meds for your son?? alternative therapys?? Re: Re: Delta f508 > Patty, > > My Son almost 10 has both genes DeltaF508. The CF Dr.'s last comment > was, that they would like to know what else is going on inside his body that > is keeping him so healthy. He also has never been hospitalized, had a mild > pneumonia once 5 years ago and his PFTs are always over 100%. He does get sinus > infections, usually cleared by a round of oral antibiotics, a few times a year. > > He also has Crohn's disease and does suffer some digestively. Lots of > stomach aches, bloating and reflux. But his lungs (knock wood) have been great. So > keep up the therapy like we do so they stay that way. > > Good luck > > > > Mom to Josh 9 1/2 wcf & Crohn's and 4 1/2 nocf but wants to > do therapy for his brother. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2003 Report Share Posted December 3, 2003 Hi Angie.I take Tyler to All Childrens and he sees the pulmonary there in St Pete Patty > tell you, I > > REALLY miss the children's hospital in Michigan, this one here in > > Florida just seems like, well, I guess not so on top of things as > up > > north. > > Sorry I keep writing so much but evidently I've had more questions > > and concerns than I thought. > > > > Patty, mom to Ty, 8, wcf & 2wocf Quote Link to comment Share on other sites More sharing options...
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