Guest guest Posted December 5, 2002 Report Share Posted December 5, 2002 We have over seven inches of snow (Pennsylvania), the kids are loving it!!! I do have a question if anyone can help me, I have 2 children w/cf, I am remarried so my children have different cf genes, my 14 old has Delta F 508 & G178R.(which is very rare) my 11 wk of son has 2 Delta F 508's. My Dr. said that some of the cf mutations have different effects, I'm really concerned because my daughter is doing great, she's 5'2 116lbs. FEV1 is 105 she is admitted to the hospital 2-3x a year, the drs. tell me that she is doing great and if you were to look at her xrays you wouldn't be able to tell she has cf. When she's well she does NOT cough at all. My son has already been in the hospital for 16 days and he's barely 3 months I'm afraid that because he has 2 of the most common gene that he won't remain as healthy as my daughter. Does anyone have any info. on this, my doctor said that we just have to wait and see but thats easy for him to say. Thanks Mom to 14 w/cf, Cody 11 wocf, Zoey 3 wocf, Evan 11 wks w/cf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2002 Report Share Posted December 5, 2002 We have over seven inches of snow (Pennsylvania), the kids are loving it!!! I do have a question if anyone can help me, I have 2 children w/cf, I am remarried so my children have different cf genes, my 14 old has Delta F 508 & G178R.(which is very rare) my 11 wk of son has 2 Delta F 508's. My Dr. said that some of the cf mutations have different effects, I'm really concerned because my daughter is doing great, she's 5'2 116lbs. FEV1 is 105 she is admitted to the hospital 2-3x a year, the drs. tell me that she is doing great and if you were to look at her xrays you wouldn't be able to tell she has cf. When she's well she does NOT cough at all. My son has already been in the hospital for 16 days and he's barely 3 months I'm afraid that because he has 2 of the most common gene that he won't remain as healthy as my daughter. Does anyone have any info. on this, my doctor said that we just have to wait and see but thats easy for him to say. Thanks Mom to 14 w/cf, Cody 11 wocf, Zoey 3 wocf, Evan 11 wks w/cf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2002 Report Share Posted December 5, 2002 We have over seven inches of snow (Pennsylvania), the kids are loving it!!! I do have a question if anyone can help me, I have 2 children w/cf, I am remarried so my children have different cf genes, my 14 old has Delta F 508 & G178R.(which is very rare) my 11 wk of son has 2 Delta F 508's. My Dr. said that some of the cf mutations have different effects, I'm really concerned because my daughter is doing great, she's 5'2 116lbs. FEV1 is 105 she is admitted to the hospital 2-3x a year, the drs. tell me that she is doing great and if you were to look at her xrays you wouldn't be able to tell she has cf. When she's well she does NOT cough at all. My son has already been in the hospital for 16 days and he's barely 3 months I'm afraid that because he has 2 of the most common gene that he won't remain as healthy as my daughter. Does anyone have any info. on this, my doctor said that we just have to wait and see but thats easy for him to say. Thanks Mom to 14 w/cf, Cody 11 wocf, Zoey 3 wocf, Evan 11 wks w/cf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2002 Report Share Posted December 5, 2002 Send some of that snow to Wyoming, we're in a four year drought!! Dori Ownbey... " If I haven't grown up by now, I'm never going to. " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2002 Report Share Posted December 5, 2002 Send some of that snow to Wyoming, we're in a four year drought!! Dori Ownbey... " If I haven't grown up by now, I'm never going to. " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2002 Report Share Posted December 5, 2002 My daughter has the CF genes A455E(rare) and F508(common). I was told by her Dr. that they are finding out that kids with this kind of combination are found to be doing good overall. is doing really good. Her height is in the 95% and her wt. is around the 65%. The Dr.'s are pleased with her progress. , Mom to 11wocf, Nikki 9wocf, Luke 6wocf and 4wcf > We have over seven inches of snow (Pennsylvania), the kids are loving it!!! > > I do have a question if anyone can help me, I have 2 children w/cf, I am > remarried so my children have different cf genes, my 14 old has Delta F 508 & > G178R.(which is very rare) my 11 wk of son has 2 Delta F 508's. My Dr. said > that some of the cf mutations have different effects, > I'm really concerned because my daughter is doing great, she's 5'2 116lbs. > FEV1 is 105 she is admitted to the hospital 2-3x a year, the drs. tell me > that she is doing great and if you were to look at her xrays you wouldn't > be able to tell she has cf. When she's well she does NOT cough at all. > My son has already been in the hospital for 16 days and he's barely 3 months > I'm afraid that because he has 2 of the most common gene that he won't remain > as healthy as my daughter. Does anyone have any info. on this, my doctor > said that we just have to wait and see but thats easy for him to say. > > Thanks > > Mom to 14 w/cf, Cody 11 wocf, Zoey 3 wocf, Evan 11 wks w/cf > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2002 Report Share Posted December 5, 2002 Hi , As hard as it is, your doctor is right... we have to wait and see. (See Lenora? I don't smack all doctors. The past few years, researchers have been studying phenotypes -- they discovered modifier genes to the CF genes, which they think helps explain why people with the same genotype present differently. Currently, the only thing researchers seem to agree on is that if you inherit two copies of Delta F508, then you will likely experience *both* lung and digestive involvement -- but they cannot predict how little or great you will be affected. P.s. If anyone is curious, I posted their high school senior photos in the archives. 's was taken Aug. '97, 's was taken Aug. '00. They both still look the same, except has adopted the scruffy college kid look... he only shaves about once a week, if that often. Santa keeps putting razors in his stocking but he doesn't get the hint... Kim Mom of (23 with asthma and cf) and (20 asthma no cf) Does anyone have any info. on this, my doctor said that we just have to wait and see but thats easy for him to say. Thanks Mom to 14 w/cf, Cody 11 wocf, Zoey 3 wocf, Evan 11 wks w/cf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2002 Report Share Posted December 5, 2002 Hi , As hard as it is, your doctor is right... we have to wait and see. (See Lenora? I don't smack all doctors. The past few years, researchers have been studying phenotypes -- they discovered modifier genes to the CF genes, which they think helps explain why people with the same genotype present differently. Currently, the only thing researchers seem to agree on is that if you inherit two copies of Delta F508, then you will likely experience *both* lung and digestive involvement -- but they cannot predict how little or great you will be affected. P.s. If anyone is curious, I posted their high school senior photos in the archives. 's was taken Aug. '97, 's was taken Aug. '00. They both still look the same, except has adopted the scruffy college kid look... he only shaves about once a week, if that often. Santa keeps putting razors in his stocking but he doesn't get the hint... Kim Mom of (23 with asthma and cf) and (20 asthma no cf) Does anyone have any info. on this, my doctor said that we just have to wait and see but thats easy for him to say. Thanks Mom to 14 w/cf, Cody 11 wocf, Zoey 3 wocf, Evan 11 wks w/cf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2002 Report Share Posted December 5, 2002 Hi , As hard as it is, your doctor is right... we have to wait and see. (See Lenora? I don't smack all doctors. The past few years, researchers have been studying phenotypes -- they discovered modifier genes to the CF genes, which they think helps explain why people with the same genotype present differently. Currently, the only thing researchers seem to agree on is that if you inherit two copies of Delta F508, then you will likely experience *both* lung and digestive involvement -- but they cannot predict how little or great you will be affected. P.s. If anyone is curious, I posted their high school senior photos in the archives. 's was taken Aug. '97, 's was taken Aug. '00. They both still look the same, except has adopted the scruffy college kid look... he only shaves about once a week, if that often. Santa keeps putting razors in his stocking but he doesn't get the hint... Kim Mom of (23 with asthma and cf) and (20 asthma no cf) Does anyone have any info. on this, my doctor said that we just have to wait and see but thats easy for him to say. Thanks Mom to 14 w/cf, Cody 11 wocf, Zoey 3 wocf, Evan 11 wks w/cf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2002 Report Share Posted December 6, 2002 YEAH snow ball " fights " :) hope those kids are building great memories , as you all sit in the dark ;;;;;;;;;;hahe-just kidding about you sitting in the dark. I just talked to my daughter in NC they still haven't power but they have gas longs in their fire places (because of ERIN'S CF, they changed them--great for now too) It is warm & warm water , soooooooo that helps. HAVE A GREAT DAY.. Oh, ERIN is double 508 & she had her first hospital time last month ...her appendix burst.........then the local hospital didn't know how to treat her CF , so she was continuously given morphine for pain & her bowel shut down.....She was sent from local hospital to DUKE CF center /hospital & was out in a week............She is going on 19yrs.....ALL FOLKS are different, so hopefully your son with 508 :) will be more as ERINS.She was also the state cross country #1 for high schools last year ..She is now in college in the mountains & skiing alot!!.with CF delta 508.............. have a wonderful weekend!! LOVE & HUGS, GrandmoMBEV Re: re: snowed in We have over seven inches of snow (Pennsylvania), the kids are loving it!!! I do have a question if anyone can help me, I have 2 children w/cf, I am remarried so my children have different cf genes, my 14 old has Delta F 508 & G178R.(which is very rare) my 11 wk of son has 2 Delta F 508's. My Dr. said that some of the cf mutations have different effects, I'm really concerned because my daughter is doing great, she's 5'2 116lbs. FEV1 is 105 she is admitted to the hospital 2-3x a year, the drs. tell me that she is doing great and if you were to look at her xrays you wouldn't be able to tell she has cf. When she's well she does NOT cough at all. My son has already been in the hospital for 16 days and he's barely 3 months I'm afraid that because he has 2 of the most common gene that he won't remain as healthy as my daughter. Does anyone have any info. on this, my doctor said that we just have to wait and see but thats easy for him to say. Thanks Mom to 14 w/cf, Cody 11 wocf, Zoey 3 wocf, Evan 11 wks w/cf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2002 Report Share Posted December 6, 2002 YEAH snow ball " fights " :) hope those kids are building great memories , as you all sit in the dark ;;;;;;;;;;hahe-just kidding about you sitting in the dark. I just talked to my daughter in NC they still haven't power but they have gas longs in their fire places (because of ERIN'S CF, they changed them--great for now too) It is warm & warm water , soooooooo that helps. HAVE A GREAT DAY.. Oh, ERIN is double 508 & she had her first hospital time last month ...her appendix burst.........then the local hospital didn't know how to treat her CF , so she was continuously given morphine for pain & her bowel shut down.....She was sent from local hospital to DUKE CF center /hospital & was out in a week............She is going on 19yrs.....ALL FOLKS are different, so hopefully your son with 508 :) will be more as ERINS.She was also the state cross country #1 for high schools last year ..She is now in college in the mountains & skiing alot!!.with CF delta 508.............. have a wonderful weekend!! LOVE & HUGS, GrandmoMBEV Re: re: snowed in We have over seven inches of snow (Pennsylvania), the kids are loving it!!! I do have a question if anyone can help me, I have 2 children w/cf, I am remarried so my children have different cf genes, my 14 old has Delta F 508 & G178R.(which is very rare) my 11 wk of son has 2 Delta F 508's. My Dr. said that some of the cf mutations have different effects, I'm really concerned because my daughter is doing great, she's 5'2 116lbs. FEV1 is 105 she is admitted to the hospital 2-3x a year, the drs. tell me that she is doing great and if you were to look at her xrays you wouldn't be able to tell she has cf. When she's well she does NOT cough at all. My son has already been in the hospital for 16 days and he's barely 3 months I'm afraid that because he has 2 of the most common gene that he won't remain as healthy as my daughter. Does anyone have any info. on this, my doctor said that we just have to wait and see but thats easy for him to say. Thanks Mom to 14 w/cf, Cody 11 wocf, Zoey 3 wocf, Evan 11 wks w/cf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2002 Report Share Posted December 6, 2002 SO right .Folks need to know that .It scares each other to think if this happens to yours, then mine will have that happen too--------NOT sooo, as you said so well, It presents differently to many. There are other genes in our bodies ass well . Bless you & your family. It must be getting(?) wild with all the CHRISTMAS " stuff " coming along. have a wonderful snowy weekend. enjoy..... LOVE & HUGS, grandmomBEV Re: re: snowed in I truly, truly hate to use this word but must. Each child, even those with the same exact mututations PRESENTS different.....I have 3 but each present so differently. Mostly pulmonary, but the boys are different than my daughter. CF is not a textbook disease where you can judge one by another each case is totally different. There are no comparisons. I got 7 inches - of snow....................... Rosemary in New York with 3 children with CF - they are 12, 10, 6...I coined the phrase " BREATHE DAMMIT " ; and now we have a dog named - are you ready for this - TOBI after their medication! Quote Link to comment Share on other sites More sharing options...
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