Guest guest Posted January 11, 2004 Report Share Posted January 11, 2004 Hi Katy, my name is Katy : ) I have two kids, one with CF and one without. My dughter is 18 months (tomorrow) and she was diagnosed in Nov of 2002. I hate to hear that your boys didn't get such great care before, but maybe now they will get the good care that they need!!! Welcome back!!! Katy mom to Austin 4 no CF & Piper 18 months w/CF Katy wrote: Hi everyone, I am old but new here =). I was here a few years back when we lived in Tenn then Moved and never have had the time to get back. Well here I am.. My name is Katy I am mom to 3 wonderful Kids Grace 13 WOCF, Micah 8 WCF and Elijah 5 WCF. My husband is in the military so we move about every 3 years until we did our last move and I believe we will be here a long time. We are currently stationed in Hawaii and loving it here a lot except for my husband having to leave in March for Afgainstian. We have a wonderful CF center here at the Army hospital and the kids have not gotten such great care as they have from here. In Tenn the boys were in the hospital all the time since we moved here to Hawaii 2 years ago Micah just had his first Hospital Tune up since we moved here and Elijah hasn't been in at all. we also were finally able to get the boys the Vest right when we got here to Hawaii ( After 2 years of Fighting insurance in Tenn) it has been a wonderful thing in my home. Its great to be back where there is wonderful support something I will need in the coming months. Thank you for having me back Katy Wife to ... GO 2-25 Avn Mom to Grace 13 Asthma, WOCF Micah 8, WCF, Saver hearing loss, Elijah 5, WCF, Seizure Disorder Josiah my little Angel 13 months old died of possible CF 1992-1993 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2004 Report Share Posted January 11, 2004 Oh no they got good care in Tenn that's not what I was trying to say .. Kosair was Wonderful just loving the Center here a lot more. Katy I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world. 16:33 -- Re: New here Hi Katy, my name is Katy : ) I have two kids, one with CF and one without. My dughter is 18 months (tomorrow) and she was diagnosed in Nov of 2002. I hate to hear that your boys didn't get such great care before, but maybe now they will get the good care that they need!!! Welcome back!!! Katy mom to Austin 4 no CF & Piper 18 months w/CF Katy wrote: Hi everyone, I am old but new here =). I was here a few years back when we lived in Tenn then Moved and never have had the time to get back. Well here I am.. My name is Katy I am mom to 3 wonderful Kids Grace 13 WOCF, Micah 8 WCF and Elijah 5 WCF. My husband is in the military so we move about every 3 years until we did our last move and I believe we will be here a long time. We are currently stationed in Hawaii and loving it here a lot except for my husband having to leave in March for Afgainstian. We have a wonderful CF center here at the Army hospital and the kids have not gotten such great care as they have from here. In Tenn the boys were in the hospital all the time since we moved here to Hawaii 2 years ago Micah just had his first Hospital Tune up since we moved here and Elijah hasn't been in at all. we also were finally able to get the boys the Vest right when we got here to Hawaii ( After 2 years of Fighting insurance in Tenn) it has been a wonderful thing in my home. Its great to be back where there is wonderful support something I will need in the coming months. Thank you for having me back Katy Wife to ... GO 2-25 Avn Mom to Grace 13 Asthma, WOCF Micah 8, WCF, Saver hearing loss, Elijah 5, WCF, Seizure Disorder Josiah my little Angel 13 months old died of possible CF 1992-1993 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2004 Report Share Posted January 11, 2004 Sorry!!! My misunderstanding!! I would LOVE to live in Hawaii!!! My husband is a R.N. and I have been trying to get him to sign up for a contract job in some place like that, we live in Arkansas, enough said........: ) Katy Katy wrote: Oh no they got good care in Tenn that's not what I was trying to say .. Kosair was Wonderful just loving the Center here a lot more. Katy I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world. 16:33 -- Re: New here Hi Katy, my name is Katy : ) I have two kids, one with CF and one without. My dughter is 18 months (tomorrow) and she was diagnosed in Nov of 2002. I hate to hear that your boys didn't get such great care before, but maybe now they will get the good care that they need!!! Welcome back!!! Katy mom to Austin 4 no CF & Piper 18 months w/CF Katy wrote: Hi everyone, I am old but new here =). I was here a few years back when we lived in Tenn then Moved and never have had the time to get back. Well here I am.. My name is Katy I am mom to 3 wonderful Kids Grace 13 WOCF, Micah 8 WCF and Elijah 5 WCF. My husband is in the military so we move about every 3 years until we did our last move and I believe we will be here a long time. We are currently stationed in Hawaii and loving it here a lot except for my husband having to leave in March for Afgainstian. We have a wonderful CF center here at the Army hospital and the kids have not gotten such great care as they have from here. In Tenn the boys were in the hospital all the time since we moved here to Hawaii 2 years ago Micah just had his first Hospital Tune up since we moved here and Elijah hasn't been in at all. we also were finally able to get the boys the Vest right when we got here to Hawaii ( After 2 years of Fighting insurance in Tenn) it has been a wonderful thing in my home. Its great to be back where there is wonderful support something I will need in the coming months. Thank you for having me back Katy Wife to ... GO 2-25 Avn Mom to Grace 13 Asthma, WOCF Micah 8, WCF, Saver hearing loss, Elijah 5, WCF, Seizure Disorder Josiah my little Angel 13 months old died of possible CF 1992-1993 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2004 Report Share Posted January 11, 2004 Katy, Welcome back. I joined this list about 18 months ago. I have a 2 year old grand daughter with CF. He name is Abby (short for Abigail). We live in Ohio. I'd love to see Hawaii someday. Gale > > Hi everyone, > I am old but new here =). I was here a few years back when we lived in > Tenn then Moved and never have had the time to get back. Well here I am.. My > name is Katy I am mom to 3 wonderful Kids Grace 13 WOCF, Micah 8 WCF and > Elijah 5 WCF. My husband is in the military so we move about every 3 > years until we did our last move and I believe we will be here a long time. > We are currently stationed in Hawaii and loving it here a lot except for my > husband having to leave in March for Afgainstian. We have a wonderful CF > center here at the Army hospital and the kids have not gotten such great > care as they have from here. In Tenn the boys were in the hospital all the > time since we moved here to Hawaii 2 years ago Micah just had his first > Hospital Tune up since we moved here and Elijah hasn't been in at all. we > also were finally able to get the boys the Vest right when we got here to > Hawaii ( After 2 years of Fighting insurance in Tenn) it has been a > wonderful thing in my home. Its great to be back where there is wonderful > support something I will need in the coming months. Thank you for having me > back > Katy > Wife to ... GO 2-25 Avn > Mom to > Grace 13 Asthma, WOCF > Micah 8, WCF, Saver hearing loss, > Elijah 5, WCF, Seizure Disorder > Josiah my little Angel 13 months old died of possible CF 1992-1993 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2004 Report Share Posted January 11, 2004 Thank you Gale for the welcome I really like it here in Hawaii and feel very blessed to be given the chance to live here. Katy -- Re: New here Katy, Welcome back. I joined this list about 18 months ago. I have a 2 year old grand daughter with CF. He name is Abby (short for Abigail). We live in Ohio. I'd love to see Hawaii someday. Gale > > Hi everyone, > I am old but new here =). I was here a few years back when we lived in > Tenn then Moved and never have had the time to get back. Well here I am.. My > name is Katy I am mom to 3 wonderful Kids Grace 13 WOCF, Micah 8 WCF and > Elijah 5 WCF. My husband is in the military so we move about every 3 > years until we did our last move and I believe we will be here a long time. > We are currently stationed in Hawaii and loving it here a lot except for my > husband having to leave in March for Afgainstian. We have a wonderful CF > center here at the Army hospital and the kids have not gotten such great > care as they have from here. In Tenn the boys were in the hospital all the > time since we moved here to Hawaii 2 years ago Micah just had his first > Hospital Tune up since we moved here and Elijah hasn't been in at all. we > also were finally able to get the boys the Vest right when we got here to > Hawaii ( After 2 years of Fighting insurance in Tenn) it has been a > wonderful thing in my home. Its great to be back where there is wonderful > support something I will need in the coming months. Thank you for having me > back > Katy > Wife to ... GO 2-25 Avn > Mom to > Grace 13 Asthma, WOCF > Micah 8, WCF, Saver hearing loss, > Elijah 5, WCF, Seizure Disorder > Josiah my little Angel 13 months old died of possible CF 1992-1993 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2004 Report Share Posted January 12, 2004 Welcome back Katy! This group has grown a lot since I joined in Sept '02, so there are a lot of new people for you to meet, but there are also a lot of people who have been here a long time. Glad that the boys are doing so well in Hawaii! mom of 5 with CF and one on the way New here Hi everyone, I am old but new here =). I was here a few years back when we lived in Tenn then Moved and never have had the time to get back. Well here I am.. My name is Katy I am mom to 3 wonderful Kids Grace 13 WOCF, Micah 8 WCF and Elijah 5 WCF. My husband is in the military so we move about every 3 years until we did our last move and I believe we will be here a long time. We are currently stationed in Hawaii and loving it here a lot except for my husband having to leave in March for Afgainstian. We have a wonderful CF center here at the Army hospital and the kids have not gotten such great care as they have from here. In Tenn the boys were in the hospital all the time since we moved here to Hawaii 2 years ago Micah just had his first Hospital Tune up since we moved here and Elijah hasn't been in at all. we also were finally able to get the boys the Vest right when we got here to Hawaii ( After 2 years of Fighting insurance in Tenn) it has been a wonderful thing in my home. Its great to be back where there is wonderful support something I will need in the coming months. Thank you for having me back Katy Wife to ... GO 2-25 Avn Mom to Grace 13 Asthma, WOCF Micah 8, WCF, Saver hearing loss, Elijah 5, WCF, Seizure Disorder Josiah my little Angel 13 months old died of possible CF 1992-1993 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2004 Report Share Posted January 12, 2004 Hi Katy... Glad youre back.I live outside St Pete Florida, but am transplanted from Michigan, outside Detroit.Hawaii must be beautiful.We tried to take another wish trip to go see it, but couldnt find a group offering a second wish:(:( I am mom to Tyler, 8 wcf(dx at 3) and to Austin,4wocf, and Selena,3wocf. > > Hi everyone, > I am old but new here =). I was here a few years back when we lived in > Tenn then Moved and never have had the time to get back. Well here I am.. My > name is Katy I am mom to 3 wonderful Kids Grace 13 WOCF, Micah 8 WCF and > Elijah 5 WCF. My husband is in the military so we move about every 3 > years until we did our last move and I believe we will be here a long time. > We are currently stationed in Hawaii and loving it here a lot except for my > husband having to leave in March for Afgainstian. We have a wonderful CF > center here at the Army hospital and the kids have not gotten such great > care as they have from here. In Tenn the boys were in the hospital all the > time since we moved here to Hawaii 2 years ago Micah just had his first > Hospital Tune up since we moved here and Elijah hasn't been in at all. we > also were finally able to get the boys the Vest right when we got here to > Hawaii ( After 2 years of Fighting insurance in Tenn) it has been a > wonderful thing in my home. Its great to be back where there is wonderful > support something I will need in the coming months. Thank you for having me > back > Katy > Wife to ... GO 2-25 Avn > Mom to > Grace 13 Asthma, WOCF > Micah 8, WCF, Saver hearing loss, > Elijah 5, WCF, Seizure Disorder > Josiah my little Angel 13 months old died of possible CF 1992-1993 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2004 Report Share Posted January 12, 2004 You might check with www.r4stars.com I am not sure anyone will do one twice. There are so very many asking for their first trips.wishes. Good luck LOVE & HUGS, GRDMBEV Re: New here Hi Katy... Glad youre back.I live outside St Pete Florida, but am transplanted from Michigan, outside Detroit.Hawaii must be beautiful.We tried to take another wish trip to go see it, but couldnt find a group offering a second wish:(:( I am mom to Tyler, 8 wcf(dx at 3) and to Austin,4wocf, and Selena,3wocf. > > Hi everyone, > I am old but new here =). I was here a few years back when we lived in > Tenn then Moved and never have had the time to get back. Well here I am.. My > name is Katy I am mom to 3 wonderful Kids Grace 13 WOCF, Micah 8 WCF and > Elijah 5 WCF. My husband is in the military so we move about every 3 > years until we did our last move and I believe we will be here a long time. > We are currently stationed in Hawaii and loving it here a lot except for my > husband having to leave in March for Afgainstian. We have a wonderful CF > center here at the Army hospital and the kids have not gotten such great > care as they have from here. In Tenn the boys were in the hospital all the > time since we moved here to Hawaii 2 years ago Micah just had his first > Hospital Tune up since we moved here and Elijah hasn't been in at all. we > also were finally able to get the boys the Vest right when we got here to > Hawaii ( After 2 years of Fighting insurance in Tenn) it has been a > wonderful thing in my home. Its great to be back where there is wonderful > support something I will need in the coming months. Thank you for having me > back > Katy > Wife to ... GO 2-25 Avn > Mom to > Grace 13 Asthma, WOCF > Micah 8, WCF, Saver hearing loss, > Elijah 5, WCF, Seizure Disorder > Josiah my little Angel 13 months old died of possible CF 1992-1993 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2004 Report Share Posted January 12, 2004 thank you for the welcome .. We love it here in Hawaii and we feel very blessed to be able to get to enjoy this. Micah is starting surfing lessons next month something he has wanted to do since we got here =).. I am very nervous about it but he is such a dare devil there is no way I can keep him down LOL.. Again thank you for the welcome Katy -- Re: New here Hi Katy... Glad youre back.I live outside St Pete Florida, but am transplanted from Michigan, outside Detroit.Hawaii must be beautiful.We tried to take another wish trip to go see it, but couldnt find a group offering a second wish:(:( I am mom to Tyler, 8 wcf(dx at 3) and to Austin,4wocf, and Selena,3wocf. > > Hi everyone, > I am old but new here =). I was here a few years back when we lived in > Tenn then Moved and never have had the time to get back. Well here I am.. My > name is Katy I am mom to 3 wonderful Kids Grace 13 WOCF, Micah 8 WCF and > Elijah 5 WCF. My husband is in the military so we move about every 3 > years until we did our last move and I believe we will be here a long time. > We are currently stationed in Hawaii and loving it here a lot except for my > husband having to leave in March for Afgainstian. We have a wonderful CF > center here at the Army hospital and the kids have not gotten such great > care as they have from here. In Tenn the boys were in the hospital all the > time since we moved here to Hawaii 2 years ago Micah just had his first > Hospital Tune up since we moved here and Elijah hasn't been in at all. we > also were finally able to get the boys the Vest right when we got here to > Hawaii ( After 2 years of Fighting insurance in Tenn) it has been a > wonderful thing in my home. Its great to be back where there is wonderful > support something I will need in the coming months. Thank you for having me > back > Katy > Wife to ... GO 2-25 Avn > Mom to > Grace 13 Asthma, WOCF > Micah 8, WCF, Saver hearing loss, > Elijah 5, WCF, Seizure Disorder > Josiah my little Angel 13 months old died of possible CF 1992-1993 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2004 Report Share Posted February 24, 2004 Welcome to the cruise ship you had not planned on signing up for. We are always saddened, all of us here at cfparents to here of yet ano ther child with a cystic fibrosis diagnosis--but as that is the case, be lieve me, this is the best place in cyberspace for those coping with cf. I am so glad that she is getting the shots to prevent RSV; I believe that these are called Synagis; there is also a vaccine against haemophilus influenzae, which is not " the flu, " but a bacterium that some persons with cf do grow. I think, now that you have introduced yourself, you should just dive right in; on this list, we are ready for it all, and the parents of younger children than mine will have more relevant things to say. n Rojas, wcf, 66, mom of three wild adults, 2 carriers and one with cystic fibrosis, aged 42, 40, and 38+, the latter having cystic fibrosis. And believe me, I am a kid compared to some of the older cystic fibrosis patients, so take heart, have hope, Love to you all, n new here I have talked to a few of you, I am really new here and really don't know what to say to a lot of people. So far I think this is a wonderfull thing. For those of you who don't know me I have a 11 month old daughter with cf. We found out she had CF when she was 5 weeks old. It is very hard to deal with. We go to clinic in Iowa City, wonderfull place just a 3 1/2 hour drive. I also have 2 boys, one is 8 the other is 4. Right now I think she is doing pretty good. She seems to have colds and ear infections alot but besides that she is pretty good. We only have to using breathing treatments when she gets a cold in here chest. We do the chest therapy every day and beside her emyzems, vitamins and here 24 calorie formula thats about all we have to do. Oh she gets a shot every month to prevent RSV. I have to wonder, I know everyone is different, but do alot of them start out this way, or what? We were looking a buying a new double wide because we just have a small old 2 bedroom house and it is drafty, but I am so afraid to do it because if she gets bad one of us would have to stay home with her. Are these common fears or am I just being dumb about the whole thing. I know this is going to sound weird, but I live my life to the point that if something would happen to anyone I love, I don't wanna have any regrets. What I mean by this is, if I have a fight with my parents or someone I have to make sure it is all ok before I hang up with them or I leave them because I don't want something to happen to them and them not know how much they ment to me. I know that probably sounds stange, but thats just the way I am. I always feel bad if I dont' take her everywhere I go. I know I have probably bored you all enough, but I just wanted to know how everyone else deals with things. ------------------------------------------- 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 24, 2004 Report Share Posted February 24, 2004 Some cf babies start out easy and some don't. ;-) It's all in the rest of their gene make up, what they catch, and when they catch it. Are you staying at home with her now? If you are, will you continue to do so once you buy the home? If you wan't to stay home, explore all of the payment options, a longer loan with less of a payment might work out better. I know when we looked at a trailer instead of a house, we could only get a loan for a max of 15 years, we could get a max of a 30 year loan for a house. You might see if you could come up with more house for less money a month that way. I know you would be paying more interest, but it might allow you to stay at home with your daughter, especially since interest is so low right now. You need to treat your daughter like you did your other two in regards to going places with out her. As long as her caretaker and the children she is around aren't sick, there is no reason for you not to go out. Well, this post rambled quite a bit more than I wanted it too. I was trying to console you a bit and don't know if that came across at all... I'm just way too tired. :-) Dawn mom of 4, 8 and under, the youngest wcf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2004 Report Share Posted February 24, 2004 Hi, Welcome! I have a son almost 3 . was dx at birth w/ mecomium ilus . he spent 2 months in nicu . your daughter's life thus far(what's her name?) sounds very simular to 's so far except he had problems with his liver at 4 months and has to take a med for the rest of his life. ive enjoyed this group a lot for the past couple years and ive learned so much too . I don't post a lot mostly just read. got his vest at 2 yrs old that thing is great! He also takes meds for reflux my family all has it so that didn't surprise me. we did the monthy synagis shots for the first 2 yrs also. we live in washinton state and drive 2.5 hrs to Spokane for clinic which we go to every 3 months we go march 4th next. nathan had a sinus infection (his first ) ear infection (his 6th) last month and his colon was full of stool so we had to flush him out. my husband & i were pretty worried about him for a couple days. but he got on meds and was fine. we both work full time but oppisite shifts so we don't put him in daycare. 3 days a week his g-parents watch him for 3 hrs when our shifts overlap. I think no daycare is one reason why he has stayed pretty healthy. hope that answered some of your questions. sorry so long. good luck. amy mom to nathan with cf new here I have talked to a few of you, I am really new here and really don't know what to say to a lot of people. So far I think this is a wonderfull thing. For those of you who don't know me I have a 11 month old daughter with cf. We found out she had CF when she was 5 weeks old. It is very hard to deal with. We go to clinic in Iowa City, wonderfull place just a 3 1/2 hour drive. I also have 2 boys, one is 8 the other is 4. Right now I think she is doing pretty good. She seems to have colds and ear infections alot but besides that she is pretty good. We only have to using breathing treatments when she gets a cold in here chest. We do the chest therapy every day and beside her emyzems, vitamins and here 24 calorie formula thats about all we have to do. Oh she gets a shot every month to prevent RSV. I have to wonder, I know everyone is different, but do alot of them start out this way, or what? We were looking a buying a new double wide because we just have a small old 2 bedroom house and it is drafty, but I am so afraid to do it because if she gets bad one of us would have to stay home with her. Are these common fears or am I just being dumb about the whole thing. I know this is going to sound weird, but I live my life to the point that if something would happen to anyone I love, I don't wanna have any regrets. What I mean by this is, if I have a fight with my parents or someone I have to make sure it is all ok before I hang up with them or I leave them because I don't want something to happen to them and them not know how much they ment to me. I know that probably sounds stange, but thats just the way I am. I always feel bad if I dont' take her everywhere I go. I know I have probably bored you all enough, but I just wanted to know how everyone else deals with things. ------------------------------------------- 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 25, 2004 Report Share Posted February 25, 2004 Hi!! Where do you live? Because we go to the University of Iowa too!! We see Dr. Jeffery . Who do you see? I have three daughters and two of them have CF. They were not diagnosed until my oldest was 6 and my youngest was 1. So we did not have they experience with an infant. My girls were eating solid foods by the time we know about them having CF. I do know about the fears you have because I worry about those things to and I don't think there is anyone on her that doesn't. None of nose the out come of our kids but I do know there is a lot of new things out there and people are living longer and healthier lives. I'm glad you found this group I don't know to many people around our area that has CF so it would be really nice to know someone else. We are also having a Camouflage Ball to raise money for CF it is April 24, 2004. Is you husband a hunter? Not that everything we are auctioning off is hunting related but I think it really helps to get the husbands involved when it has to do with something they like. Hope to hear from you soon. Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2004 Report Share Posted February 25, 2004 In a message dated 2/25/2004 8:42:48 PM Central Standard Time, jdurham_24fan@... writes: Jackie Durham We have an appointment tomorrow with her ENT doctor it is at 3:30. It would be great if we could meet!! Let me know what your husband says about the Camouflage ball we are hoping to make this a bigger event then last year. We only had about 32 people there last year but it was still a lot of fun. Let me know when you are going to be in Iowa City tomorrow and maybe we can meet. I will be at work from about 9:30 to 2:00 if you want you can call me there. The number is There is two Deb's in my shop so make sure you ask for Deb A. Hope to hear from you. Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2004 Report Share Posted February 25, 2004 I just wanted to let you know that your daughter's routine sounds very similar to my son's when he was your daughter's age. I also remember when he was about 18 months old I heard about a 6 month old baby that needed more treatments and meds than my son did and I still hear of older kids needing less that he does. We've put a lot of thought into planning for the future and wanting to provide well for our son. It is hard sometimes to know what to do and since there is no crystal ball to predict the future for us often we just have to do the best we can. I know what you mean about not wanting to have regrets, I feel the same way. I don't want to look back and think I should have tried harder or asked more questions, etc. That being said, life is such a balancing act because in the end I want to give my son the best, well-rounded life possible and don't want to make CF the focus of his life but often it is my focus. I met a mom whose daughter was in her early 20s and had CF. This mom told me that when they received their daughter's diagnosis she was devastated but one day she just decided that regardless of how much or little time they would have together, she was going to raise a child she could be proud of. I've always thought that she had a good attitude-don't waste the time you do have and make that time count for something. Just know that you aren't alone or feeling anything that most of us haven't felt too. new here I have talked to a few of you, I am really new here and really don't know what to say to a lot of people. So far I think this is a wonderfull thing. For those of you who don't know me I have a 11 month old daughter with cf. We found out she had CF when she was 5 weeks old. It is very hard to deal with. We go to clinic in Iowa City, wonderfull place just a 3 1/2 hour drive. I also have 2 boys, one is 8 the other is 4. Right now I think she is doing pretty good. She seems to have colds and ear infections alot but besides that she is pretty good. We only have to using breathing treatments when she gets a cold in here chest. We do the chest therapy every day and beside her emyzems, vitamins and here 24 calorie formula thats about all we have to do. Oh she gets a shot every month to prevent RSV. I have to wonder, I know everyone is different, but do alot of them start out this way, or what? We were looking a buying a new double wide because we just have a small old 2 bedroom house and it is drafty, but I am so afraid to do it because if she gets bad one of us would have to stay home with her. Are these common fears or am I just being dumb about the whole thing. I know this is going to sound weird, but I live my life to the point that if something would happen to anyone I love, I don't wanna have any regrets. What I mean by this is, if I have a fight with my parents or someone I have to make sure it is all ok before I hang up with them or I leave them because I don't want something to happen to them and them not know how much they ment to me. I know that probably sounds stange, but thats just the way I am. I always feel bad if I dont' take her everywhere I go. I know I have probably bored you all enough, but I just wanted to know how everyone else deals with things. ------------------------------------------- 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 25, 2004 Report Share Posted February 25, 2004 , when I was growing up with cystic fibrosis, my paediatrician told my mother not to " obsess and compulse over EVERYTHING--go for 50%! " I have never forgotten that and of course thought of it when my own third child was born with cystic fibrosis, too. We are fortunate, and if I told you my age or the kid's or her cf carrier older siblings, you would not believe it! Love to you, n Rojas new here I have talked to a few of you, I am really new here and really don't know what to say to a lot of people. So far I think this is a wonderfull thing. For those of you who don't know me I have a 11 month old daughter with cf. We found out she had CF when she was 5 weeks old. It is very hard to deal with. We go to clinic in Iowa City, wonderfull place just a 3 1/2 hour drive. I also have 2 boys, one is 8 the other is 4. Right now I think she is doing pretty good. She seems to have colds and ear infections alot but besides that she is pretty good. We only have to using breathing treatments when she gets a cold in here chest. We do the chest therapy every day and beside her emyzems, vitamins and here 24 calorie formula thats about all we have to do. Oh she gets a shot every month to prevent RSV. I have to wonder, I know everyone is different, but do alot of them start out this way, or what? We were looking a buying a new double wide because we just have a small old 2 bedroom house and it is drafty, but I am so afraid to do it because if she gets bad one of us would have to stay home with her. Are these common fears or am I just being dumb about the whole thing. I know this is going to sound weird, but I live my life to the point that if something would happen to anyone I love, I don't wanna have any regrets. What I mean by this is, if I have a fight with my parents or someone I have to make sure it is all ok before I hang up with them or I leave them because I don't want something to happen to them and them not know how much they ment to me. I know that probably sounds stange, but thats just the way I am. I always feel bad if I dont' take her everywhere I go. I know I have probably bored you all enough, but I just wanted to know how everyone else deals with things. ------------------------------------------- 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 27, 2004 Report Share Posted February 27, 2004 Welcome , With a sweat test of 80 and all the symptoms I would imagine your son does have CF. Now they can test for over 1000 mutations, this was not possible until recent years. A company called Ambry Genetics does it, also s Hopkins and I believe Toronto General, depending on where you live. My daughter was diagnosed at the age of 8 months by sweat test and later was genetically tested, first they only found one mutation and it has only been since 2002 that Ambry found her other rare mutation. So I think having another genetic test would be a good idea, just make sure they test for over 1000 mutations. How old are your kids? How is their health? love, M mom of Nick age 21 nocf and age 20 wcf Orange County CA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2004 Report Share Posted February 27, 2004 Hi , Welcome to the group. The test you mentioned that only tests for 25 mutations is the standard cf carrier screening test. It should not be used as a diagnostic tool. The Ambry test will test for 1000 cf mutations. Make sure your doctor requests the Ambry blood test. How old are your children? I hope they are doing well. Sara - mommy of Zach 2 wcf > Hello to everyone, > i am new here and have a few questions. > I have three chldren, two I believe are affected. My son who has > chronic sinusitis, lung infections, malabsorption ( takes Creon 20 ) > just had a sweat chloride test, the doctor called and said it was > positive for CF with a level of 80. > My question is this, he wants him to have the genetic testing, can > you have a positive sweat test and a diagnosis of CF but not have any > of the genes for CF. > I read somewhere that they can only test for 25 of the 1,000 > mutations. > The reason I ask is I was told my kids had CF when they were > toddlers, then the geneticist dod gene testing on my daughter and the > report said she had none of the known mutations so we were told no it > is not CF. However at the bottom of the report it said not all genes > can be tested for and this test cannot rule out CF in a small > percentage of patients. > Does anyone else have a positive sweat chloride but no known mutation? > Sorry for so many questions... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2004 Report Share Posted February 28, 2004 Hi , My daughter is 5 and has CF. She has one fairly common mutation and one less common mutation. We just found out that our son who is due in July is a carrier, but doesn't have CF. I am sure all the smart people here have answered your questions, but here is my understanding of it all. You can have a positive sweat test and be diagnosed with CF and not find both or even any CF mutations. It would depend on your doctors choice of tests. There are a few. The basic screening only tests for about 25 mutations. those are the most common ones. Genzyme does one that tests for about 88 mutations (I wouldn't choose them again though). I think another company does one that tests for more. then there is Ambry who tests for 1000 mutations. There are some people who's mutations do not even show up with the Ambry test, but they are few and far between. The genetic testing only came to be pretty recently so many MANY people are diagnosed without benefit of genetic testing. Keep asking questions, it's the only way we learn stuff! mom of 5 with CF and a boy on the way, no CF new here Hello to everyone, i am new here and have a few questions. I have three chldren, two I believe are affected. My son who has chronic sinusitis, lung infections, malabsorption ( takes Creon 20 ) just had a sweat chloride test, the doctor called and said it was positive for CF with a level of 80. My question is this, he wants him to have the genetic testing, can you have a positive sweat test and a diagnosis of CF but not have any of the genes for CF. I read somewhere that they can only test for 25 of the 1,000 mutations. The reason I ask is I was told my kids had CF when they were toddlers, then the geneticist dod gene testing on my daughter and the report said she had none of the known mutations so we were told no it is not CF. However at the bottom of the report it said not all genes can be tested for and this test cannot rule out CF in a small percentage of patients. Does anyone else have a positive sweat chloride but no known mutation? Sorry for so many questions... ------------------------------------------- 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 28, 2004 Report Share Posted February 28, 2004 , Welcome and I know you will find the answers you are looking for here - or at least someone who can help you find them. I know you will find help and acceptance. Vondie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2004 Report Share Posted February 28, 2004 Well, you could go bank rupt and have the testing done at Toronto, and the many more than 1,000 now could all be tested for, but if the diagnosis is clear without that, o.k. I had the full bonanza done-- three times, my kid wcf twice--one rare mutation in volved. Happy hunting, and stay well--all of you, ! Love, n new here Hello to everyone, i am new here and have a few questions. I have three chldren, two I believe are affected. My son who has chronic sinusitis, lung infections, malabsorption ( takes Creon 20 ) just had a sweat chloride test, the doctor called and said it was positive for CF with a level of 80. My question is this, he wants him to have the genetic testing, can you have a positive sweat test and a diagnosis of CF but not have any of the genes for CF. I read somewhere that they can only test for 25 of the 1,000 mutations. The reason I ask is I was told my kids had CF when they were toddlers, then the geneticist dod gene testing on my daughter and the report said she had none of the known mutations so we were told no it is not CF. However at the bottom of the report it said not all genes can be tested for and this test cannot rule out CF in a small percentage of patients. Does anyone else have a positive sweat chloride but no known mutation? Sorry for so many questions... ------------------------------------------- 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 28, 2004 Report Share Posted February 28, 2004 Quest Diagnostics in San Capistrano tests for every known mutation, and is used by centers all over the country. n Rojas Re: new here Welcome , With a sweat test of 80 and all the symptoms I would imagine your son does have CF. Now they can test for over 1000 mutations, this was not possible until recent years. A company called Ambry Genetics does it, also s Hopkins and I believe Toronto General, depending on where you live. My daughter was diagnosed at the age of 8 months by sweat test and later was genetically tested, first they only found one mutation and it has only been since 2002 that Ambry found her other rare mutation. So I think having another genetic test would be a good idea, just make sure they test for over 1000 mutations. How old are your kids? How is their health? love, M mom of Nick age 21 nocf and age 20 wcf Orange County CA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2004 Report Share Posted February 28, 2004 n, Is Quest as good as Ambry? I don't know much about the testing, but if I end up getting it done, Quest is probably who will do it as it's covered by my insurance (not to say that an expensive test like this will be covered. But, with proof of medical necessity, it might be). I think my Hepatitis C PCR was done in San Jaun Capistrano. Monday, I'll be talking with my doc to see about at least getting the sweat test done. Hopefully, he'll agree to it. Love, Jill Re: new here Welcome , With a sweat test of 80 and all the symptoms I would imagine your son does have CF. Now they can test for over 1000 mutations, this was not possible until recent years. A company called Ambry Genetics does it, also s Hopkins and I believe Toronto General, depending on where you live. My daughter was diagnosed at the age of 8 months by sweat test and later was genetically tested, first they only found one mutation and it has only been since 2002 that Ambry found her other rare mutation. So I think having another genetic test would be a good idea, just make sure they test for over 1000 mutations. How old are your kids? How is their health? love, M mom of Nick age 21 nocf and age 20 wcf Orange County CA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2004 Report Share Posted February 28, 2004 Better, but it is up to one's physician and one's cf center as to who they utilise; my insurance went with the one chosen by my center, and later, I found out through a cousin who works for Quest that their genetic testing is used all over the country; they test for almost as many as s Hopkins (no longer funded for this by the CFF) and Toronto; they do not send results on mutations which have been shown NOT so far to be disease causing, and this is true of Toronto and s Hopkins as well. That said, I may be out of date by a week-- and a lot can happen in a week! Love, and do keep us all posted on the outcome, n Rojas Re: new here Welcome , With a sweat test of 80 and all the symptoms I would imagine your son does have CF. Now they can test for over 1000 mutations, this was not possible until recent years. A company called Ambry Genetics does it, also s Hopkins and I believe Toronto General, depending on where you live. My daughter was diagnosed at the age of 8 months by sweat test and later was genetically tested, first they only found one mutation and it has only been since 2002 that Ambry found her other rare mutation. So I think having another genetic test would be a good idea, just make sure they test for over 1000 mutations. How old are your kids? How is their health? love, M mom of Nick age 21 nocf and age 20 wcf Orange County CA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2004 Report Share Posted February 28, 2004 Sorry, gang; this was in response to a post in which someone asked mer whether Ambry or some other was better for genetic testing; I neatly failed to change the subjectline, put the person's name in, not does the original question on my system appear with the post- working on getting my typing, subject lines, list person's names, etc. RIGHT next time! Love to all, and thank you for your patience! n Rojas Re: new here Welcome , With a sweat test of 80 and all the symptoms I would imagine your son does have CF. Now they can test for over 1000 mutations, this was not possible until recent years. A company called Ambry Genetics does it, also s Hopkins and I believe Toronto General, depending on where you live. My daughter was diagnosed at the age of 8 months by sweat test and later was genetically tested, first they only found one mutation and it has only been since 2002 that Ambry found her other rare mutation. So I think having another genetic test would be a good idea, just make sure they test for over 1000 mutations. How old are your kids? How is their health? love, M mom of Nick age 21 nocf and age 20 wcf Orange County CA Quote Link to comment Share on other sites More sharing options...
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