Guest guest Posted November 20, 2000 Report Share Posted November 20, 2000 Hello Kris, Welcome to the list. , mommy of 4, , 15 with a much older mind, Caleb, 6 and a kindergarten pro, finally, , 4 1/2 and the next famous artist, and , 15months with CF and reflux and a beautiful smile and bright blue eyes Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2000 Report Share Posted November 20, 2000 hi kris, welcome i also have 2 daughters with cf, april is 19 yrs old and lynne is 15 yrs old. patty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2000 Report Share Posted November 22, 2000 Hi Kris I also have two daughters, both with cf, Adele 3.5 , Celia 8 weeks. Adele does not eat, she is g-tube fed, has been since 5 months old, ng-tube fed before that. Adele would have projectile vomiting with every feed so we too had a Nissan fundoplication done. She then started having severe retching and having diarrhoea with all feeds. We tried many different formulas even went to a j-tube for a while. As strange as it sounds every thing cleared up almost over night. She is still g-tube fed, but no more retching, no more diarrhoea. We never really found out why she had all the problems. Celia was born with a bowel obstruction. After her surgery she was put on pregestimil, 5cc per hour. She would vomit with this small amount. We decided to stop it and just go straight to nursing, no vomiting. We came home a week later (at three and half weeks old) She was not latching very well so while still in hospital we decided to bottle feed her the breast milk I pumped. We continued to do this for a few more weeks then decided it was too much, taking too much time so we decided to start her on formula. We tried different formulas, but none worked, she would have projectile vomiting with all of them. I was still pumping so we decided to go back to breast milk, all vomiting stopped. She apparently has a strong milk protein and soy protein allergy. Anyway, to make sense of this story, we are now wondering if this was Adele's problem all along. She had projectile vomiting, we put the ng-tube in to feed her, continue to have projectile vomiting, we do the Nissan and g-tube, continue to feed her. This food makes her sick so she doesn't want to eat it. Anyway, you get the picture. This may have nothing to do with your daughter's problems, but it's probably worth looking into. Most babies born with milk allergies outgrow them by a year, but if this is the problem, the psychological damage it does can last much longer. Again, we don't know that this is what happened with Adele, but it's diffenetly worth thinking. e introduction > Just a quick note of introduction. We have two wonderful girls, both with CF, Morgen 3 and Emme 7 mos. We have had quite a bout with Emme this last few months due to severe reflux, finally had a Nissan done which cleared up her lung problems, but now she won't eat. NG feedings are helping keep her nutrition up, but any suggestions are greatly appreciated. Our oldest is doing quite well. I am so grateful for a list like this and hope that I get to know everyone. > bye from Idaho.... > > Kris > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2000 Report Share Posted November 27, 2000 I'll not answer the questions ,except to say when my granddaughter started it was told to her, no sports or other activities until the physio was done. She hasn't ever been ill or hospitalized and her dad told her he wanted to keep it that way for as long as possible if not forever. ...BUT I DO WANT TO WELCOME YOU TO THE LISTS ....THEY ARE GREAT .......WE WELCOME YOUR INPUTE ALL THE TIME AS WELL. LOVE * & HUGS, GRANDMOMBEV Introduction Hi there, My name is Shirley, I live in Northern Ireland and I have a 13 year old daughter (Emma) with Cystic Fibrosis. Emma was diagnosed at 10 weeks old from the heel prick test which was backed up by a sweat test soon afterwards. Emma keeps fairly well and hasn't had very many chest infections. She keeps herself fit through horseriding which she is passionate about. I'm finding it increasingly difficult to get her to do her physio and her nebulisers. Since she became a teenager she just rebels against it all. Has anyone else experienced this problem? Shirley [Non-text portions of this message have been removed] -------------------------- eGroups Sponsor -------------------------~-~> Create your business web site your way now at Bigstep.com. It's the fast, easy way to get online, to promote your business, and to sell your products and services. Try Bigstep.com now. http://click./1/9183/3/_/480698/_/97534 3651/ -------------------------------------------------- ------------------> *********************** This is a secular list. *********************** PLEASE do not post religious emails to the list. -------------------------------------------------- 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. -------------------------------------------------- Our webpage is at http://www.eohio.net/malbright/cfparents.htm _________________________________________________ Post message: cfparentsegroups Subscribe: cfparents-subscribeegroups Unsubscribe: cfparents-unsubscribeegroups List owner: cfparents-owneregroups _________________________________________________ WE HAVE A CHAT PAGE!!! /chat/cfparents _________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2000 Report Share Posted November 27, 2000 Hi Shirley, welcome to the list. Since my Fiona is only 3.5 years old, I have no experience with a lack of compliance. But from what I have heard elsewhere, it is quite common with teenagers. What kind of physio is Emma doing? Here in Germany they try to teach the Active Cycle of Breathing to all parents, since this is something, which can be done anywhere and independently from others, for instance during the bus ride to school. And some of our docs are saying, that intensive exercise may be able to replace special physio at least to a certain degree. For sure one hour of passionate horseriding should have a higher efficacy than half an hour of physio without passion. Regarding the nebs there is not much you can offer your daughter at this point, but scientists are working on that problem and fast working devices, which could cut the time required for nebs to half or less are being developed. Hopefully you can find a compromise with Emma. Fighting about the treatments is hard to you and her. Bye-bye Torsten, dad of Fiona 3.5wcf e-mail: aberdeen95@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2000 Report Share Posted November 27, 2000 Shirley, I was born inNth Ireland and lived there until I was three. My grandmother and family still live there. I came to Australia when I was three so have no memories of belfast. I have a 3 year old called Eilish with cf and a 6 year old son wocf called Liam, good Irish nameMy grandmother lives in Berlin Street and is 96. Some aunties live onSydnheham rd also. Introduction > Hi there, > > My name is Shirley, I live in Northern Ireland and I have a 13 year old daughter (Emma) with Cystic Fibrosis. Emma was diagnosed at 10 weeks old from the heel prick test which was backed up by a sweat test soon afterwards. > > Emma keeps fairly well and hasn't had very many chest infections. She keeps herself fit through horseriding which she is passionate about. > > I'm finding it increasingly difficult to get her to do her physio and her nebulisers. Since she became a teenager she just rebels against it all. Has anyone else experienced this problem? > > Shirley > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2000 Report Share Posted November 27, 2000 Torsten, Have you ever heard of the Halolite nebuliser? We had a conference here a little while ago and the people from this company presented there machine. Since then quite a few of the parents use it. Apparently it puts 95% of the nebulised stuff straight into the lungs where most others are only putting 12-20% (at a stretch) into the lungs. It also beeps when everthing has been nebulised. The parents I have spoken to said there childrens lung function test have all improved since using this machine, it also does it all in 5 minutes. Re: Introduction > Hi Shirley, > > welcome to the list. Since my Fiona is only 3.5 years old, I have no experience > with a lack of compliance. But from what I have heard elsewhere, it is quite > common with teenagers. What kind of physio is Emma doing? Here in Germany they > try to teach the Active Cycle of Breathing to all parents, since this is > something, which can be done anywhere and independently from others, for > instance during the bus ride to school. And some of our docs are saying, that > intensive exercise may be able to replace special physio at least to a certain > degree. For sure one hour of passionate horseriding should have a higher > efficacy than half an hour of physio without passion. > > Regarding the nebs there is not much you can offer your daughter at this point, > but scientists are working on that problem and fast working devices, which could > cut the time required for nebs to half or less are being developed. > > Hopefully you can find a compromise with Emma. Fighting about the treatments is > hard to you and her. > > Bye-bye > Torsten, dad of Fiona 3.5wcf > e-mail: aberdeen95@... > > > > *********************** > This is a secular list. > *********************** > > > PLEASE do not post religious emails to the list. > > > -------------------------------------------------- > > > 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. > > -------------------------------------------------- > > > Our webpage is at http://www.eohio.net/malbright/cfparents.htm > > _________________________________________________ > Post message: cfparentsegroups > Subscribe: cfparents-subscribeegroups > Unsubscribe: cfparents-unsubscribeegroups > List owner: cfparents-owneregroups > _________________________________________________ > > WE HAVE A CHAT PAGE!!! > /chat/cfparents > _________________________________________________ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2000 Report Share Posted November 27, 2000 I agree about the passionate horsebackriding, especially English style--it got me through adolescence--along with swimming, and the fact that I was able to play a pretty bad game of tennis with anyone willing. I hope this helps, n Rojas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2000 Report Share Posted November 27, 2000 << Regarding the nebs there is not much you can offer your daughter at this point, but scientists are working on that problem and fast working devices, which could cut the time required for nebs to half or less are being developed. >> But, I wonder, for things like albuteral and steroid nebs, would the doc go for an inhaler? given that she is noncompliant with nebs....maybe the doc would go for it if he thought she was likely to get more than she was getting before (anything is better than nothing?) I realize that this won't work with PUlmozyme and Tobi...but maybe if you can cut the number of nebs needed, she will be more compliant with those necessary ones? Take care, Jen Mommy of 7, including ph 18 months with CF, Mallory 3 with CF, RAD, GERD, OSA, port-a-cath; 4 with CF; 6, Miranda 9, Brittany 7 yo foster daughter with Type 1 diabetes (juvenile diabetes) soon to be adopted by us; ERica 4 yo foster daughter, soon to be adopted by us also ; also aunt to 3 yo with CF Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2000 Report Share Posted November 27, 2000 Shirley, iF YOU'D LIKE A TAPE ON THE " ACTIVE CYCLE OF BREATHING " , LET ME KNOW. GIVE ME YOUR POSTAL MAIL ADDRESS.---COMPLETE ONE. I WILL GLADLY MAIL TO YOU. LOVE & HUGS, GRANDMOMBEV Re: Introduction Hi Shirley, welcome to the list. Since my Fiona is only 3.5 years old, I have no experience with a lack of compliance. But from what I have heard elsewhere, it is quite common with teenagers. What kind of physio is Emma doing? Here in Germany they try to teach the Active Cycle of Breathing to all parents, since this is something, which can be done anywhere and independently from others, for instance during the bus ride to school. And some of our docs are saying, that intensive exercise may be able to replace special physio at least to a certain degree. For sure one hour of passionate horseriding should have a higher efficacy than half an hour of physio without passion. Regarding the nebs there is not much you can offer your daughter at this point, but scientists are working on that problem and fast working devices, which could cut the time required for nebs to half or less are being developed. Hopefully you can find a compromise with Emma. Fighting about the treatments is hard to you and her. Bye-bye Torsten, dad of Fiona 3.5wcf e-mail: aberdeen95@... -------------------------- eGroups *********************** This is a secular list. *********************** PLEASE do not post religious emails to the list. -------------------------------------------------- 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. -------------------------------------------------- Our webpage is at http://www.eohio.net/malbright/cfparents.htm _________________________________________________ Post message: cfparentsegroups Subscribe: cfparents-subscribeegroups Unsubscribe: cfparents-unsubscribeegroups List owner: cfparents-owneregroups _________________________________________________ WE HAVE A CHAT PAGE!!! /chat/cfparents _________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2000 Report Share Posted November 27, 2000 - Hi, I am in the US (California to be exact) and am VERY interested in the Halolote nebulizer you mentioned to Torsten. How much do they cost? Do you know if I can get one here in the states? I really like the beeping feature-no arguing that way! Is there an e-mail address for the company that you can send? Thanks so much for putting up with my (many) questions! Christy, mother of Kassi-cf and Kylii-carrier Baxter wrote: > Torsten, > > Have you ever heard of the Halolite nebuliser? We had a conference here a > little while ago and the people from this company presented there machine. > Since then quite a few of the parents use it. Apparently it puts 95% of the > nebulised stuff straight into the lungs where most others are only putting > 12-20% (at a stretch) into the lungs. It also beeps when everthing has been > nebulised. The parents I have spoken to said there childrens lung function > test have all improved since using this machine, it also does it all in 5 > minutes. > > > Re: Introduction > > > Hi Shirley, > > > > welcome to the list. Since my Fiona is only 3.5 years old, I have no > experience > > with a lack of compliance. But from what I have heard elsewhere, it is > quite > > common with teenagers. What kind of physio is Emma doing? Here in Germany > they > > try to teach the Active Cycle of Breathing to all parents, since this is > > something, which can be done anywhere and independently from others, for > > instance during the bus ride to school. And some of our docs are saying, > that > > intensive exercise may be able to replace special physio at least to a > certain > > degree. For sure one hour of passionate horseriding should have a higher > > efficacy than half an hour of physio without passion. > > > > Regarding the nebs there is not much you can offer your daughter at this > point, > > but scientists are working on that problem and fast working devices, which > could > > cut the time required for nebs to half or less are being developed. > > > > Hopefully you can find a compromise with Emma. Fighting about the > treatments is > > hard to you and her. > > > > Bye-bye > > Torsten, dad of Fiona 3.5wcf > > e-mail: aberdeen95@... > > > > > > > > *********************** > > This is a secular list. > > *********************** > > > > > > PLEASE do not post religious emails to the list. > > > > > > -------------------------------------------------- > > > > > > 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. > > > > -------------------------------------------------- > > > > > > Our webpage is at http://www.eohio.net/malbright/cfparents.htm > > > > _________________________________________________ > > Post message: cfparentsegroups > > Subscribe: cfparents-subscribeegroups > > Unsubscribe: cfparents-unsubscribeegroups > > List owner: cfparents-owneregroups > > _________________________________________________ > > > > WE HAVE A CHAT PAGE!!! > > /chat/cfparents > > _________________________________________________ > > > > > > > > > *********************** > This is a secular list. > *********************** > > PLEASE do not post religious emails to the list. > > -------------------------------------------------- > > 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. > > -------------------------------------------------- > > Our webpage is at http://www.eohio.net/malbright/cfparents.htm > > _________________________________________________ > Post message: cfparentsegroups > Subscribe: cfparents-subscribeegroups > Unsubscribe: cfparents-unsubscribeegroups > List owner: cfparents-owneregroups > _________________________________________________ > > WE HAVE A CHAT PAGE!!! > /chat/cfparents > _________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2000 Report Share Posted November 27, 2000 Christy, I've left a message with my cf association to call me tomorrow and let me know which company makes the halolite and I'll let you know tomorrow night (my time, probably opposite for you). The parents Ive spoken to say its great and they like the beeper and time saving factor also. Re: Introduction > > > > > Hi Shirley, > > > > > > welcome to the list. Since my Fiona is only 3.5 years old, I have no > > experience > > > with a lack of compliance. But from what I have heard elsewhere, it is > > quite > > > common with teenagers. What kind of physio is Emma doing? Here in Germany > > they > > > try to teach the Active Cycle of Breathing to all parents, since this is > > > something, which can be done anywhere and independently from others, for > > > instance during the bus ride to school. And some of our docs are saying, > > that > > > intensive exercise may be able to replace special physio at least to a > > certain > > > degree. For sure one hour of passionate horseriding should have a higher > > > efficacy than half an hour of physio without passion. > > > > > > Regarding the nebs there is not much you can offer your daughter at this > > point, > > > but scientists are working on that problem and fast working devices, which > > could > > > cut the time required for nebs to half or less are being developed. > > > > > > Hopefully you can find a compromise with Emma. Fighting about the > > treatments is > > > hard to you and her. > > > > > > Bye-bye > > > Torsten, dad of Fiona 3.5wcf > > > e-mail: aberdeen95@... > > > > > > > > > > > > *********************** > > > This is a secular list. > > > *********************** > > > > > > > > > PLEASE do not post religious emails to the list. > > > > > > > > > -------------------------------------------------- > > > > > > > > > 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. > > > > > > -------------------------------------------------- > > > > > > > > > Our webpage is at http://www.eohio.net/malbright/cfparents.htm > > > > > > _________________________________________________ > > > Post message: cfparentsegroups > > > Subscribe: cfparents-subscribeegroups > > > Unsubscribe: cfparents-unsubscribeegroups > > > List owner: cfparents-owneregroups > > > _________________________________________________ > > > > > > WE HAVE A CHAT PAGE!!! > > > /chat/cfparents > > > _________________________________________________ > > > > > > > > > > > > > > > *********************** > > This is a secular list. > > *********************** > > > > PLEASE do not post religious emails to the list. > > > > -------------------------------------------------- > > > > 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. > > > > -------------------------------------------------- > > > > Our webpage is at http://www.eohio.net/malbright/cfparents.htm > > > > _________________________________________________ > > Post message: cfparentsegroups > > Subscribe: cfparents-subscribeegroups > > Unsubscribe: cfparents-unsubscribeegroups > > List owner: cfparents-owneregroups > > _________________________________________________ > > > > WE HAVE A CHAT PAGE!!! > > /chat/cfparents > > _________________________________________________ > > > > *********************** > This is a secular list. > *********************** > > > PLEASE do not post religious emails to the list. > > > -------------------------------------------------- > > > 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. > > -------------------------------------------------- > > > Our webpage is at http://www.eohio.net/malbright/cfparents.htm > > _________________________________________________ > Post message: cfparentsegroups > Subscribe: cfparents-subscribeegroups > Unsubscribe: cfparents-unsubscribeegroups > List owner: cfparents-owneregroups > _________________________________________________ > > WE HAVE A CHAT PAGE!!! > /chat/cfparents > _________________________________________________ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2000 Report Share Posted November 27, 2000 Hi Shirley, Caed mile failte. My husband is from So. Ireland - Cork. I hear alot about the rebelliousness of teenagers wrt their meds and cpt. I haven't had to face that yet, since my twins are still under a year old. But, they're already exhibiting evidence of stubborness. Wonder where they get that from? LOL You're fortunate that your daughter enjoys horse- back riding. That's an excellent form of cpt! Now, if you live close to the ocean (and who doesn't in Ireland!), get her to ride on the beach, and you'll get a two-fer with the great salt air! From what I hear, one needs to be firm that the nebs are non-negotiable, and it's just a matter of making it as pleasant an experience as possible for her - perhaps have her favorite videos (about horses?) on hand to watch during her treatments. Also, I was told to NEVER apologize to her for having to do them. It's a fact of life, like brushing your teeth. Best of luck to you. Mom to and , twins wcf __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2000 Report Share Posted November 28, 2000 shirley, i know what you mean, my daughters are 19 and 15 years old. and the 19yr old thing she is this big adult now who knows what she needs and how to handle her cf. i wish she would tell me how she handles it. she is in her 2nd year of college and lives on campus. so when she comes home she feels like she does not have to listen to me. but like i tell her i pay for college and i pay fpr this house that she will listen to me . i feel that i have worked to hard to keep my girls going for her to decide not to care. patty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2000 Report Share Posted November 28, 2000 Shirley, although my daughter is only 3 she's as stubborn as ever. She screams when it's time for her mask but we just ignore it and shove it on her face, which is great because it muffles the sound. If she thinks no-one is paying her any attention the she stops. She's not to bad with physio but she has her moments. We usually put a video on for her. Sometimes she says she hates physio and doesnt want to do it, but we tell her to bad she has to. It probably sounds mean but I think we need to be firm with her so she knows it not negitoable. But then again she's only three, and I hope doesnt get worse, but I wont hold my breathe. Re: Introduction > Hi Shirley, > > Caed mile failte. My husband is from So. Ireland - > Cork. > > I hear alot about the rebelliousness of teenagers > wrt their meds and cpt. I haven't had to face that > yet, since my twins are still under a year old. > But, they're already exhibiting evidence of > stubborness. Wonder where they get that from? LOL > > You're fortunate that your daughter enjoys horse- > back riding. That's an excellent form of cpt! Now, > if you live close to the ocean (and who doesn't in > Ireland!), get her to ride on the beach, and you'll > get a two-fer with the great salt air! > > From what I hear, one needs to be firm that the > nebs are non-negotiable, and it's just a matter of > making it as pleasant an experience as possible for > her - perhaps have her favorite videos (about horses?) > on hand to watch during her treatments. Also, I was > told to NEVER apologize to her for having to do them. > It's a fact of life, like brushing your teeth. > > Best of luck to you. > > > Mom to and , twins wcf > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2000 Report Share Posted November 28, 2000 I dont think it is avaiable yet in the states.I have literature on it and once featured it in my newsletter BUT, it hasnt been licenced yet ...as far as I know. If anyone knows more , give me a hoot.........I had our buyer check,but ..no can do yet. I bet you could get by someone purchasing there for you and then shipping it to you personally. BUT I would also check on that too. I'll have Ali run another check on it .........:) LOVE, grandmomBEV Re: Introduction - Hi, I am in the US (California to be exact) and am VERY interested in the Halolote nebulizer you mentioned to Torsten. How much do they cost? Do you know if I can get one here in the states? I really like the beeping feature-no arguing that way! Is there an e-mail address for the company that you can send? Thanks so much for putting up with my (many) questions! Christy, mother of Kassi-cf and Kylii-carrier Baxter wrote: > Torsten, > > Have you ever heard of the Halolite nebuliser? We had a conference here a > little while ago and the people from this company presented there machine. > Since then quite a few of the parents use it. Apparently it puts 95% of the > nebulised stuff straight into the lungs where most others are only putting > 12-20% (at a stretch) into the lungs. It also beeps when everthing has been > nebulised. The parents I have spoken to said there childrens lung function > test have all improved since using this machine, it also does it all in 5 > minutes. > > > Re: Introduction > > > Hi Shirley, > > > > welcome to the list. Since my Fiona is only 3.5 years old, I have no > experience > > with a lack of compliance. But from what I have heard elsewhere, it is > quite > > common with teenagers. What kind of physio is Emma doing? Here in Germany > they > > try to teach the Active Cycle of Breathing to all parents, since this is > > something, which can be done anywhere and independently from others, for > > instance during the bus ride to school. And some of our docs are saying, > that > > intensive exercise may be able to replace special physio at least to a > certain > > degree. For sure one hour of passionate horseriding should have a higher > > efficacy than half an hour of physio without passion. > > > > Regarding the nebs there is not much you can offer your daughter at this > point, > > but scientists are working on that problem and fast working devices, which > could > > cut the time required for nebs to half or less are being developed. > > > > Hopefully you can find a compromise with Emma. Fighting about the > treatments is > > hard to you and her. > > > > Bye-bye > > Torsten, dad of Fiona 3.5wcf > > e-mail: aberdeen95@... > > > > > > > > *********************** > > This is a secular list. > > *********************** > > > > > > PLEASE do not post religious emails to the list. > > > > > > -------------------------------------------------- > > > > > > 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. > > > > -------------------------------------------------- > > > > > > Our webpage is at http://www.eohio.net/malbright/cfparents.htm > > > > _________________________________________________ > > Post message: cfparentsegroups > > Subscribe: cfparents-subscribeegroups > > Unsubscribe: cfparents-unsubscribeegroups > > List owner: cfparents-owneregroups > > _________________________________________________ > > > > WE HAVE A CHAT PAGE!!! > > /chat/cfparents > > _________________________________________________ > > > > > > > > > *********************** > This is a secular list. > *********************** > > PLEASE do not post religious emails to the list. > > -------------------------------------------------- > > 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. > > -------------------------------------------------- > > Our webpage is at http://www.eohio.net/malbright/cfparents.htm > > _________________________________________________ > Post message: cfparentsegroups > Subscribe: cfparents-subscribeegroups > Unsubscribe: cfparents-unsubscribeegroups > List owner: cfparents-owneregroups > _________________________________________________ > > WE HAVE A CHAT PAGE!!! > /chat/cfparents > _________________________________________________ *********************** This is a secular list. *********************** PLEASE do not post religious emails to the list. -------------------------------------------------- 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. -------------------------------------------------- Our webpage is at http://www.eohio.net/malbright/cfparents.htm _________________________________________________ Post message: cfparentsegroups Subscribe: cfparents-subscribeegroups Unsubscribe: cfparents-unsubscribeegroups List owner: cfparents-owneregroups _________________________________________________ WE HAVE A CHAT PAGE!!! /chat/cfparents _________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2000 Report Share Posted November 29, 2000 Bev, I could get some info. on the halolite for you if you like as its made by medic-aid which isnt far from me and the parents love it. Re: Introduction > > > > > Hi Shirley, > > > > > > welcome to the list. Since my Fiona is only 3.5 years old, I have no > > experience > > > with a lack of compliance. But from what I have heard elsewhere, it is > > quite > > > common with teenagers. What kind of physio is Emma doing? Here in > Germany > > they > > > try to teach the Active Cycle of Breathing to all parents, since this is > > > something, which can be done anywhere and independently from others, for > > > instance during the bus ride to school. And some of our docs are saying, > > that > > > intensive exercise may be able to replace special physio at least to a > > certain > > > degree. For sure one hour of passionate horseriding should have a higher > > > efficacy than half an hour of physio without passion. > > > > > > Regarding the nebs there is not much you can offer your daughter at this > > point, > > > but scientists are working on that problem and fast working devices, > which > > could > > > cut the time required for nebs to half or less are being developed. > > > > > > Hopefully you can find a compromise with Emma. Fighting about the > > treatments is > > > hard to you and her. > > > > > > Bye-bye > > > Torsten, dad of Fiona 3.5wcf > > > e-mail: aberdeen95@... > > > > > > > > > > > > *********************** > > > This is a secular list. > > > *********************** > > > > > > > > > PLEASE do not post religious emails to the list. > > > > > > > > > -------------------------------------------------- > > > > > > > > > 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. > > > > > > -------------------------------------------------- > > > > > > > > > Our webpage is at http://www.eohio.net/malbright/cfparents.htm > > > > > > _________________________________________________ > > > Post message: cfparentsegroups > > > Subscribe: cfparents-subscribeegroups > > > Unsubscribe: cfparents-unsubscribeegroups > > > List owner: cfparents-owneregroups > > > _________________________________________________ > > > > > > WE HAVE A CHAT PAGE!!! > > > /chat/cfparents > > > _________________________________________________ > > > > > > > > > > > > > > > *********************** > > This is a secular list. > > *********************** > > > > PLEASE do not post religious emails to the list. > > > > -------------------------------------------------- > > > > 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. > > > > -------------------------------------------------- > > > > Our webpage is at http://www.eohio.net/malbright/cfparents.htm > > > > _________________________________________________ > > Post message: cfparentsegroups > > Subscribe: cfparents-subscribeegroups > > Unsubscribe: cfparents-unsubscribeegroups > > List owner: cfparents-owneregroups > > _________________________________________________ > > > > WE HAVE A CHAT PAGE!!! > > /chat/cfparents > > _________________________________________________ > > > > *********************** > This is a secular list. > *********************** > > > PLEASE do not post religious emails to the list. > > > -------------------------------------------------- > > > 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. > > -------------------------------------------------- > > > Our webpage is at http://www.eohio.net/malbright/cfparents.htm > > _________________________________________________ > Post message: cfparentsegroups > Subscribe: cfparents-subscribeegroups > Unsubscribe: cfparents-unsubscribeegroups > List owner: cfparents-owneregroups > _________________________________________________ > > WE HAVE A CHAT PAGE!!! > /chat/cfparents > _________________________________________________ > > > > > > *********************** > This is a secular list. > *********************** > > > PLEASE do not post religious emails to the list. > > > -------------------------------------------------- > > > 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. > > -------------------------------------------------- > > > Our webpage is at http://www.eohio.net/malbright/cfparents.htm > > _________________________________________________ > Post message: cfparentsegroups > Subscribe: cfparents-subscribeegroups > Unsubscribe: cfparents-unsubscribeegroups > List owner: cfparents-owneregroups > _________________________________________________ > > WE HAVE A CHAT PAGE!!! > /chat/cfparents > _________________________________________________ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2000 Report Share Posted November 29, 2000 JULIE, You are so very sweet to offer. I do have all of the info in fact I also offered to send to folks. They had a booth at a conf. several years ago ..I gathered up info and also ran an article with pics in my newsletter. Even tho it couldn't be gotten in states ...I felt folks should know about it . It looked good. Those that were demonstrating it there also said it was faster too. We had asked to carry it for them in the states. They aren't licensed to sell here in states. Clinical trials and OUR FDA must approve..Isnt that silly. ? Anyway. You are very kind to offer . I really appreciate that....These list are just great. We need to keep on spreading the info ..over and over again. Someone new might get on and have missed earlier info. MY thoughts and wishes are here for you ..... LOVE & HUGS, GRANDMOMBEV Re: Introduction Bev, I could get some info. on the halolite for you if you like as its made by medic-aid which isnt far from me and the parents love it. Re: Introduction > > > > > Hi Shirley, > > > > > > welcome to the list. Since my Fiona is only 3.5 years old, I have no > > experience > > > with a lack of compliance. But from what I have heard elsewhere, it is > > quite > > > common with teenagers. What kind of physio is Emma doing? Here in > Germany > > they > > > try to teach the Active Cycle of Breathing to all parents, since this is > > > something, which can be done anywhere and independently from others, for > > > instance during the bus ride to school. And some of our docs are saying, > > that > > > intensive exercise may be able to replace special physio at least to a > > certain > > > degree. For sure one hour of passionate horseriding should have a higher > > > efficacy than half an hour of physio without passion. > > > > > > Regarding the nebs there is not much you can offer your daughter at this > > point, > > > but scientists are working on that problem and fast working devices, > which > > could > > > cut the time required for nebs to half or less are being developed. > > > > > > Hopefully you can find a compromise with Emma. Fighting about the > > treatments is > > > hard to you and her. > > > > > > Bye-bye > > > Torsten, dad of Fiona 3.5wcf > > > e-mail: aberdeen95@... > > > > > > > > > > > > *********************** > > > This is a secular list. > > > *********************** > > > > > > > > > PLEASE do not post religious emails to the list. > > > > > > > > > -------------------------------------------------- > > > > > > > > > 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. > > > > > > -------------------------------------------------- > > > > > > > > > Our webpage is at http://www.eohio.net/malbright/cfparents.htm > > > > > > _________________________________________________ > > > Post message: cfparentsegroups > > > Subscribe: cfparents-subscribeegroups > > > Unsubscribe: cfparents-unsubscribeegroups > > > List owner: cfparents-owneregroups > > > _________________________________________________ > > > > > > WE HAVE A CHAT PAGE!!! > > > /chat/cfparents > > > _________________________________________________ > > > > > > > > > > > > > > > *********************** > > This is a secular list. > > *********************** > > > > PLEASE do not post religious emails to the list. > > > > -------------------------------------------------- > > > > 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. > > > > -------------------------------------------------- > > > > Our webpage is at http://www.eohio.net/malbright/cfparents.htm > > > > _________________________________________________ > > Post message: cfparentsegroups > > Subscribe: cfparents-subscribeegroups > > Unsubscribe: cfparents-unsubscribeegroups > > List owner: cfparents-owneregroups > > _________________________________________________ > > > > WE HAVE A CHAT PAGE!!! > > /chat/cfparents > > _________________________________________________ > > > > *********************** > This is a secular list. > *********************** > > > PLEASE do not post religious emails to the list. > > > -------------------------------------------------- > > > 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. > > -------------------------------------------------- > > > Our webpage is at http://www.eohio.net/malbright/cfparents.htm > > _________________________________________________ > Post message: cfparentsegroups > Subscribe: cfparents-subscribeegroups > Unsubscribe: cfparents-unsubscribeegroups > List owner: cfparents-owneregroups > _________________________________________________ > > WE HAVE A CHAT PAGE!!! > /chat/cfparents > _________________________________________________ > > > > > > *********************** > This is a secular list. > *********************** > > > PLEASE do not post religious emails to the list. > > > -------------------------------------------------- > > > 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. > > -------------------------------------------------- > > > Our webpage is at http://www.eohio.net/malbright/cfparents.htm > > _________________________________________________ > Post message: cfparentsegroups > Subscribe: cfparents-subscribeegroups > Unsubscribe: cfparents-unsubscribeegroups > List owner: cfparents-owneregroups > _________________________________________________ > > WE HAVE A CHAT PAGE!!! > /chat/cfparents > _________________________________________________ > > > *********************** This is a secular list. *********************** PLEASE do not post religious emails to the list. -------------------------------------------------- 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. -------------------------------------------------- Our webpage is at http://www.eohio.net/malbright/cfparents.htm _________________________________________________ Post message: cfparentsegroups Subscribe: cfparents-subscribeegroups Unsubscribe: cfparents-unsubscribeegroups List owner: cfparents-owneregroups _________________________________________________ WE HAVE A CHAT PAGE!!! /chat/cfparents _________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2000 Report Share Posted November 29, 2000 - Thanks so much for your help, I really appreciate it! Thanks, Christy Baxter wrote: > Christy, > > I've left a message with my cf association to call me tomorrow and let me > know which company makes the halolite and I'll let you know tomorrow night > (my time, probably opposite for you). The parents Ive spoken to say its > great and they like the beeper and time saving factor also. > > > Re: Introduction > > > > > > > Hi Shirley, > > > > > > > > welcome to the list. Since my Fiona is only 3.5 years old, I have no > > > experience > > > > with a lack of compliance. But from what I have heard elsewhere, it is > > > quite > > > > common with teenagers. What kind of physio is Emma doing? Here in > Germany > > > they > > > > try to teach the Active Cycle of Breathing to all parents, since this > is > > > > something, which can be done anywhere and independently from others, > for > > > > instance during the bus ride to school. And some of our docs are > saying, > > > that > > > > intensive exercise may be able to replace special physio at least to a > > > certain > > > > degree. For sure one hour of passionate horseriding should have a > higher > > > > efficacy than half an hour of physio without passion. > > > > > > > > Regarding the nebs there is not much you can offer your daughter at > this > > > point, > > > > but scientists are working on that problem and fast working devices, > which > > > could > > > > cut the time required for nebs to half or less are being developed. > > > > > > > > Hopefully you can find a compromise with Emma. Fighting about the > > > treatments is > > > > hard to you and her. > > > > > > > > Bye-bye > > > > Torsten, dad of Fiona 3.5wcf > > > > e-mail: aberdeen95@... > > > > > > > > > > > > > > > > *********************** > > > > This is a secular list. > > > > *********************** > > > > > > > > > > > > PLEASE do not post religious emails to the list. > > > > > > > > > > > > -------------------------------------------------- > > > > > > > > > > > > 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. > > > > > > > > -------------------------------------------------- > > > > > > > > > > > > Our webpage is at http://www.eohio.net/malbright/cfparents.htm > > > > > > > > _________________________________________________ > > > > Post message: cfparentsegroups > > > > Subscribe: cfparents-subscribeegroups > > > > Unsubscribe: cfparents-unsubscribeegroups > > > > List owner: cfparents-owneregroups > > > > _________________________________________________ > > > > > > > > WE HAVE A CHAT PAGE!!! > > > > /chat/cfparents > > > > _________________________________________________ > > > > > > > > > > > > > > > > > > > > > *********************** > > > This is a secular list. > > > *********************** > > > > > > PLEASE do not post religious emails to the list. > > > > > > -------------------------------------------------- > > > > > > 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. > > > > > > -------------------------------------------------- > > > > > > Our webpage is at http://www.eohio.net/malbright/cfparents.htm > > > > > > _________________________________________________ > > > Post message: cfparentsegroups > > > Subscribe: cfparents-subscribeegroups > > > Unsubscribe: cfparents-unsubscribeegroups > > > List owner: cfparents-owneregroups > > > _________________________________________________ > > > > > > WE HAVE A CHAT PAGE!!! > > > /chat/cfparents > > > _________________________________________________ > > > > > > > > *********************** > > This is a secular list. > > *********************** > > > > > > PLEASE do not post religious emails to the list. > > > > > > -------------------------------------------------- > > > > > > 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. > > > > -------------------------------------------------- > > > > > > Our webpage is at http://www.eohio.net/malbright/cfparents.htm > > > > _________________________________________________ > > Post message: cfparentsegroups > > Subscribe: cfparents-subscribeegroups > > Unsubscribe: cfparents-unsubscribeegroups > > List owner: cfparents-owneregroups > > _________________________________________________ > > > > WE HAVE A CHAT PAGE!!! > > /chat/cfparents > > _________________________________________________ > > > > > > > > > *********************** > This is a secular list. > *********************** > > PLEASE do not post religious emails to the list. > > -------------------------------------------------- > > 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. > > -------------------------------------------------- > > Our webpage is at http://www.eohio.net/malbright/cfparents.htm > > _________________________________________________ > Post message: cfparentsegroups > Subscribe: cfparents-subscribeegroups > Unsubscribe: cfparents-unsubscribeegroups > List owner: cfparents-owneregroups > _________________________________________________ > > WE HAVE A CHAT PAGE!!! > /chat/cfparents > _________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2004 Report Share Posted July 11, 2004 Hi! I am new to the group. Iam a 59 yr old dentist in upstate NY--I was first ill in April of l999-lost weight,was tired,anorexic...after an upper and lower GI and ERCP at Westchester Medical Center--and 2 unsuccessful scoping by their " best " --both of whom claimed unable to get the ducts open....had a liver biopsy--which was nefative. My original bilirubin upon admission was abount 5 1/2...one week later with basically no treatment other that 300 mg actigall tid, went home with a bilirubin of 2.0.....I then sought out a GI,liver specialist (Dr. lin Klion)--a wonderful man at Mt. Sinai --NYC. For approximately five years have felt good---until about 6 weeks ago-- When I started to feel tired,anorexic,lose weight--almost like five years ago. Mind you my deifinitive diagnosis of PSC was not really verified in l999--not until last December--when I had another ERCP done as an outpatient at MT. Sinai. Anyway,still felt good the...but alas four months later had this reoccurrence as mentioned. I know I was drinking a little at weekend dinners and a wedding and on a cruise--hopefully that triggered this latest cholangitis. Anyway--one month ago my bilirubin was close to 7 when I saw him this time. It is now four weeks later and the bilrubin went to 5.l in two weeks and then 4.3 last week----had taken a 12 day dose of Cipro 1000 mg. I am starting to feel stroneg gradually and my appetite is coming bak---I shall go in two weeks for follow-up bloodwork. I am hoping some of you mosy knowledgable people could give me some advice if these experiences sound familiar to you?--Aslo any opinions on milk thistle effectiveness for liver health? All responses would be appreciated! Thanks, DR. MG Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2004 Report Share Posted July 11, 2004 Thank you for your welcome. We are in MI. I am sorry too that your young son also has this disease. I am concerned because there is still so much that we don't know. My son's AlK was 800 on his last check when normal high is only 130. Is this typical with PSC? I would also like to know about the Milk Thistle. Best wishes for improved health, Lee > Hello, and welcome to the group. I am very sorry to hear about your > PSC diagnosis, but glad that you found this support group. I hope > that we can answer some of your questions. > Many PSC patients take ursodeoxycholic acid (UCDA; ursodiol; > actigall), and some also take supplementary medications such as milk > thistle, and/or S-adenosyl methionine (SAMe). My son, , is > taking ursodiol together with asacol (for ulcerative colitis), and > rifampin to control pruritus (itching). Perhaps others in the group > could comment on the effectiveness of milk thistle? > > My wife, Judy, is from upstate NY (Batavia), but we now live in > Indiana. > > Best regards, > > Dave > > (father of (19); PSC 07/03; UC 08/03) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2004 Report Share Posted July 11, 2004 Thank you for your welcome. We are in MI. I am sorry too that your young son also has this disease. I am concerned because there is still so much that we don't know. My son's AlK was 800 on his last check when normal high is only 130. Is this typical with PSC? I would also like to know about the Milk Thistle. Best wishes for improved health, Lee > Hello, and welcome to the group. I am very sorry to hear about your > PSC diagnosis, but glad that you found this support group. I hope > that we can answer some of your questions. > Many PSC patients take ursodeoxycholic acid (UCDA; ursodiol; > actigall), and some also take supplementary medications such as milk > thistle, and/or S-adenosyl methionine (SAMe). My son, , is > taking ursodiol together with asacol (for ulcerative colitis), and > rifampin to control pruritus (itching). Perhaps others in the group > could comment on the effectiveness of milk thistle? > > My wife, Judy, is from upstate NY (Batavia), but we now live in > Indiana. > > Best regards, > > Dave > > (father of (19); PSC 07/03; UC 08/03) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2004 Report Share Posted July 13, 2004 mendel45dmd wrote: >-Aslo any opinions on milk thistle > effectiveness for liver health? All responses would be appreciated! I've been taking milk thistle for over 10 years now, and it certainly hasn't hurt me at all. Of course it's extrememly difficult to say for sure if it's helped me or not. I've surprised my doctors a few times with how well I'm doing... about five years ago my hepatologist said I'd probably need a transplant within the next five years, but right now I'm in almost exactly the same shape (in some ways better) than I was then. I guess the bottom line is that Milk Thistle is safe, and there's good evidence that it's effective against some forms of liver damage, but no really good evidence one way or the other for it's effectiveness against PSC induced liver damage. So I take it with the " can't hurt, might help " philosophy, knowing that it won't cure my PSC, but that it might help my liver cope. athan PS Welcome to the group! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2004 Report Share Posted July 13, 2004 mendel45dmd wrote: >-Aslo any opinions on milk thistle > effectiveness for liver health? All responses would be appreciated! I've been taking milk thistle for over 10 years now, and it certainly hasn't hurt me at all. Of course it's extrememly difficult to say for sure if it's helped me or not. I've surprised my doctors a few times with how well I'm doing... about five years ago my hepatologist said I'd probably need a transplant within the next five years, but right now I'm in almost exactly the same shape (in some ways better) than I was then. I guess the bottom line is that Milk Thistle is safe, and there's good evidence that it's effective against some forms of liver damage, but no really good evidence one way or the other for it's effectiveness against PSC induced liver damage. So I take it with the " can't hurt, might help " philosophy, knowing that it won't cure my PSC, but that it might help my liver cope. athan PS Welcome to the group! Quote Link to comment Share on other sites More sharing options...
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