Guest guest Posted January 8, 2004 Report Share Posted January 8, 2004 WOW , that is a loaded question. BUT, FIRST off. WELCOME TO THE LIST............... YOU WILL TRULY ENJOY The folks on this & many other CF lists are here BECAUSE WE CARE. & want to learn as you do. I am just a grandmom to a 20 year old gal (away at college now & doing allot of skiing as she is in snow mountains of N.C. in BOONE, NC. Doing VERY well in studies too. Soooooo, Think positive. Your precious Mazie will do well with all the ingredients you listed. Her location will vary with other factors. The salt air world wonderfully for almost all as it serves to help to clear out those sinus' ..naturally. It does us all -me included. The cold weather as they are older, unless they stay inside a great deal , isn't kind to them.especially if the joints, etc are involved. BUT Always remember allot has to do with one is used to from the start & build themselves up to living with .MANY live & well in every state/country. BTW, Folks from all over the world are on the lists........... If you send me your mailing address, I will be happy to send you some tapes , booklets & information on CF for all ages. There is no charge. . If you would like, just post me back with what you'd like and your address on one post. Again, WELCOME ........ Love & Hugs, GrandmomBEV is location a factor? Hello, I'm new to the group I've been reading a lot of the messages, I guess waiting to feel a little more comfortable before I started to post myself. To tell you a little about myself I'm married, my husband and I have two wonderful girls. My five year old has cf, her name is Mazie, she was diagnosed just after she was two, her only real sign that she had was a rectal prolapse. Our pedatrician thought it was a shot in the dark, she actually said, let's take worse case sinario let's test her for cf then we have the worst out of the way and we can narrow down what else it could be. When I was extremly consered that they were testing of cf she said, don't worry I truely don't think this is what it is, she shows no other symptoms this is just a starting point to finding her problem. So without much worry I went the next morning for the sweat chloride test, they called the next morning and wanted us to come in at closing of office hours for a " talk " needless to say we knew the news could not be good.That's when we were hit square between our eyes, no history anywhere that we could find, and to top it off at this time I was 4 months pregant for Alivia my (will be on Sat.) three year old baby! With a lot of prayers Alivia is only a carrier. I guess I'm recently new to talking to others outside her care team about her illness, so forgive me when I sound uninformed, I'm doing much better now, I'm not just being the mommy robot that makes sure all meds. and treatments are done on schedule, I'm much more ready to take this disease on and give it everything in my power to help others and fight this ugly thing and find a cure!!!! So finally, my question, does anyone see a difference in people with cf according to where you live, their climate and enviroment. Does it make a noticable difference, I live in Ohio, my girls and I spent a lot of time recently in Arizona. I visited the cf clinic in Phoenix and my curiosity is now getting the best of me. Is my daughter, in other people's opinion, better off in one climate verses another? Or am I off base that with the right care, meds, attention, treatments, ect. cf peole can thrive anywhere?! Just always wondering if I'm doing everything in my power to slow progession as much as we can. ------------------------------------------- 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 January 8, 2004 Report Share Posted January 8, 2004 Nice to meet you Mazie's mom. I'm Natalia. I'm 24 and have CF, was diagnosed as a little one. I am very sick right now. For me climate is HUGE. First of all I can't breathe all that well in really humid climates, as in bitter cold ones. It just becomes a pain where it's too cold to go outside in the winter, and too hot in the summer. Toronto is like that. Horrid. But I get over the discomfort of not being out there always in perfect weather. I have am amazing CF team in Toronto and I would not leave no matter what the climate. I always travel a lot to allow myself from sunshine in the winter. Just so I don't go crazy. But I know with age this will become more and more important for Mazie. Progression of CF allows for less tolerance of heat, humidity, and bitter cold. I was tolerant of everything until a certain point in my CF. So it is important to keep your eyes open to her breathing. I become wheezy and dry in the winter, and gaspy and short/tight in humid summer. Hope that helps. I guess it's key to find the optimum. But I think good care is essential. Natalia 24 w CF Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2004 Report Share Posted January 8, 2004 Welcome! Which Ohio clinic do you use? We live in , OH. My grand daughter, Abby, uses the Columbus CF Care Center. We think that this is a great clinic. There are several others on this list that also use the Columbus clinic. Nice to meet you! Gale, Grandma to Abby (2 yo wcf) > Hello, I'm new to the group I've been reading a lot of the messages, > I guess waiting to feel a little more comfortable before I started to > post myself. To tell you a little about myself I'm married, my > husband and I have two wonderful girls. My five year old has cf, her > name is Mazie, she was diagnosed just after she was two, her only > real sign that she had was a rectal prolapse. Our pedatrician > thought it was a shot in the dark, she actually said, let's take > worse case sinario let's test her for cf then we have the worst out > of the way and we can narrow down what else it could be. When I was > extremly consered that they were testing of cf she said, don't worry > I truely don't think this is what it is, she shows no other symptoms > this is just a starting point to finding her problem. So without > much worry I went the next morning for the sweat chloride test, they > called the next morning and wanted us to come in at closing of office > hours for a " talk " needless to say we knew the news could not be > good.That's when we were hit square between our eyes, no history > anywhere that we could find, and to top it off at this time I was 4 > months pregant for Alivia my (will be on Sat.) three year old baby! > With a lot of prayers Alivia is only a carrier. I guess I'm recently > new to talking to others outside her care team about her illness, so > forgive me when I sound uninformed, I'm doing much better now, I'm > not just being the mommy robot that makes sure all meds. and > treatments are done on schedule, I'm much more ready to take this > disease on and give it everything in my power to help others and > fight this ugly thing and find a cure!!!! > So finally, my question, does anyone see a difference in people with > cf according to where you live, their climate and enviroment. Does > it make a noticable difference, I live in Ohio, my girls and I spent > a lot of time recently in Arizona. I visited the cf clinic in > Phoenix and my curiosity is now getting the best of me. Is my > daughter, in other people's opinion, better off in one climate verses > another? Or am I off base that with the right care, meds, attention, > treatments, ect. cf peole can thrive anywhere?! > Just always wondering if I'm doing everything in my power to slow > progession as much as we can. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2004 Report Share Posted January 8, 2004 Bev is right. This list will do so much for you. It's so warm and friendly. In that sense it does not matter where you are, since you'll have us to question and just talk with. These moms and dads are SO smart when it comes to CF. They can really help. And I'm here for a bit of a different angle, as are other people with CF. On Thursday, January 8, 2004, at 01:37 AM, maziebird98 wrote: > Hello, I'm new to the group I've been reading a lot of the messages, > I guess waiting to feel a little more comfortable before I started to > post myself. To tell you a little about myself I'm married, my > husband and I have two wonderful girls. My five year old has cf, her > name is Mazie, she was diagnosed just after she was two, her only > real sign that she had was a rectal prolapse. Our pedatrician > thought it was a shot in the dark, she actually said, let's take > worse case sinario let's test her for cf then we have the worst out > of the way and we can narrow down what else it could be. When I was > extremly consered that they were testing of cf she said, don't worry > I truely don't think this is what it is, she shows no other symptoms > this is just a starting point to finding her problem. So without > much worry I went the next morning for the sweat chloride test, they > called the next morning and wanted us to come in at closing of office > hours for a " talk " needless to say we knew the news could not be > good.That's when we were hit square between our eyes, no history > anywhere that we could find, and to top it off at this time I was 4 > months pregant for Alivia my (will be on Sat.) three year old baby! > With a lot of prayers Alivia is only a carrier. I guess I'm recently > new to talking to others outside her care team about her illness, so > forgive me when I sound uninformed, I'm doing much better now, I'm > not just being the mommy robot that makes sure all meds. and > treatments are done on schedule, I'm much more ready to take this > disease on and give it everything in my power to help others and > fight this ugly thing and find a cure!!!! > So finally, my question, does anyone see a difference in people with > cf according to where you live, their climate and enviroment. Does > it make a noticable difference, I live in Ohio, my girls and I spent > a lot of time recently in Arizona. I visited the cf clinic in > Phoenix and my curiosity is now getting the best of me. Is my > daughter, in other people's opinion, better off in one climate verses > another? Or am I off base that with the right care, meds, attention, > treatments, ect. cf peole can thrive anywhere?! > Just always wondering if I'm doing everything in my power to slow > progession as much as we can. > > > > ------------------------------------------- > 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. > > ------------------------------------ > > > <image.tiff> > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2004 Report Share Posted January 8, 2004 We live in California in a rural area and I always feel that if they are acclimated to an area that is always a plus. You have to do what is right for you and not let others dictate to you. Especially doctors. Your daughter is the most important and only you can decide what is best for her. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2004 Report Share Posted January 8, 2004 Welcome! My daughter is 5 and was diagnosed with CF at 9 months old. I don't think that it makes much of a difference when the kids are little what the climate is. I am sure that that might change as her CF progresses, but right now, I don't think it matters much. We are in the Philadelphia area, so I don't think our climate is that much different from yours (you might have it a bit cooler but not much) Anyway, you have found a great list to learn from. Ask questions, vent your frustration, get advice! Mom of 5 with CF and one on the way check out our group at http://groups.msn.com/TeamJane is location a factor? Hello, I'm new to the group I've been reading a lot of the messages, I guess waiting to feel a little more comfortable before I started to post myself. To tell you a little about myself I'm married, my husband and I have two wonderful girls. My five year old has cf, her name is Mazie, she was diagnosed just after she was two, her only real sign that she had was a rectal prolapse. Our pedatrician thought it was a shot in the dark, she actually said, let's take worse case sinario let's test her for cf then we have the worst out of the way and we can narrow down what else it could be. When I was extremly consered that they were testing of cf she said, don't worry I truely don't think this is what it is, she shows no other symptoms this is just a starting point to finding her problem. So without much worry I went the next morning for the sweat chloride test, they called the next morning and wanted us to come in at closing of office hours for a " talk " needless to say we knew the news could not be good.That's when we were hit square between our eyes, no history anywhere that we could find, and to top it off at this time I was 4 months pregant for Alivia my (will be on Sat.) three year old baby! With a lot of prayers Alivia is only a carrier. I guess I'm recently new to talking to others outside her care team about her illness, so forgive me when I sound uninformed, I'm doing much better now, I'm not just being the mommy robot that makes sure all meds. and treatments are done on schedule, I'm much more ready to take this disease on and give it everything in my power to help others and fight this ugly thing and find a cure!!!! So finally, my question, does anyone see a difference in people with cf according to where you live, their climate and enviroment. Does it make a noticable difference, I live in Ohio, my girls and I spent a lot of time recently in Arizona. I visited the cf clinic in Phoenix and my curiosity is now getting the best of me. Is my daughter, in other people's opinion, better off in one climate verses another? Or am I off base that with the right care, meds, attention, treatments, ect. cf peole can thrive anywhere?! Just always wondering if I'm doing everything in my power to slow progession as much as we can. ------------------------------------------- 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 January 8, 2004 Report Share Posted January 8, 2004 Air pollution is a big factor; I have long since ditched the site that shows this for the United States; I just typed in: air pollution, us areas, in my browser and was stunned at the Phoenix area; also it is HOT, so if your child loses a lot of salt, that might be good. We have to look at the individual, and not generalise. At least that is what I think at this point. Love to you. n Rojas is location a factor? Hello, I'm new to the group I've been reading a lot of the messages, I guess waiting to feel a little more comfortable before I started to post myself. To tell you a little about myself I'm married, my husband and I have two wonderful girls. My five year old has cf, her name is Mazie, she was diagnosed just after she was two, her only real sign that she had was a rectal prolapse. Our pedatrician thought it was a shot in the dark, she actually said, let's take worse case sinario let's test her for cf then we have the worst out of the way and we can narrow down what else it could be. When I was extremly consered that they were testing of cf she said, don't worry I truely don't think this is what it is, she shows no other symptoms this is just a starting point to finding her problem. So without much worry I went the next morning for the sweat chloride test, they called the next morning and wanted us to come in at closing of office hours for a " talk " needless to say we knew the news could not be good.That's when we were hit square between our eyes, no history anywhere that we could find, and to top it off at this time I was 4 months pregant for Alivia my (will be on Sat.) three year old baby! With a lot of prayers Alivia is only a carrier. I guess I'm recently new to talking to others outside her care team about her illness, so forgive me when I sound uninformed, I'm doing much better now, I'm not just being the mommy robot that makes sure all meds. and treatments are done on schedule, I'm much more ready to take this disease on and give it everything in my power to help others and fight this ugly thing and find a cure!!!! So finally, my question, does anyone see a difference in people with cf according to where you live, their climate and enviroment. Does it make a noticable difference, I live in Ohio, my girls and I spent a lot of time recently in Arizona. I visited the cf clinic in Phoenix and my curiosity is now getting the best of me. Is my daughter, in other people's opinion, better off in one climate verses another? Or am I off base that with the right care, meds, attention, treatments, ect. cf peole can thrive anywhere?! Just always wondering if I'm doing everything in my power to slow progession as much as we can. ------------------------------------------- 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 January 8, 2004 Report Share Posted January 8, 2004 Welcome Mazie's Mom, (I didn't see your name anywhere) There has been a lot of discussion as to if climate has any effect of a pwcf's (person w/cf) health. The answer (well of course there is no one answer, just lots of opinions) is no. I have heard some prefer humidity, such as by the ocean, some prefer dry heat like Phoenix, I don't know anyone who prefers cold but they do fine there. Maybe the cold weather kills off some bacteria. We live in Orange County Ca and I know the air quality is a problem for everyone, not just pwcf, but it is where we live and where my husband's job is, and we like it, the pollution is only bad mainly in August and Sept. And it isn't as bad here as some places like the valleys. We also have air conditioning and air filters and we do what we can. So live where you want, (this is of course just my opinion) I believe Mazie will do well in any case. You sound like a good mom, keep up the good care and she will be as well as she can. welcome again, love, M mom of Nick age 21 nocf and age 19 wcf Quote Link to comment Share on other sites More sharing options...
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