Guest guest Posted October 29, 2000 Report Share Posted October 29, 2000 I saw that someone already posted a list of DAN drs. in this area(MD-DC) but I just want to recommend the one that I know - Dr. Pamela Compart is close to Columbia MD - we drive up from DC and it takes about 45 minutes. We like her very much. Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2000 Report Share Posted October 29, 2000 I saw that someone already posted a list of DAN drs. in this area(MD-DC) but I just want to recommend the one that I know - Dr. Pamela Compart is close to Columbia MD - we drive up from DC and it takes about 45 minutes. We like her very much. Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2001 Report Share Posted May 17, 2001 You might also want to go to CYSTIC-L@... there are a great many links there that will really help you .Best wishes. I ams a grandmom too.My Grddaughter is 16+ and doing very well . Getting ready to go off to college.plays all school team sports ---and excels.etc. Your wee on will be fine .todays world is really working on treatments as well as a cure.My gals name is ERIN. LOVE & HUGS, grandmomBEV New to List I am glad to find some people on this list from UK. I am from Hertfordshire. My granddaughter Shelby was born November 16th 2000. Diagnosed on 9th February. She has been attending the Royal Brompton but we are not too happy with them as they admitted her for a tummy bug called C.Dif. (This is short for something longer). Whilst she was there she had throat and nasal swabs done and at first they said they were clear then called us back after she had been sent home to say she had pseudomonas. She is on a nebuliser at the moment and does not like it much. Sometimes it takes two of us to get her to sit still and not struggle. The Teletubbies worked for a while but now she fights us. Any ideas? Her mother Louise, does not have a computer. She is also a single mum. I need to know (in plain english) all I can about CF and so I surf the web a lot. I find most of it goes over my head as you all seem to know such a lot about it all. I have learnt quite a bit by just reading the two groups I subscribe to. Thank you all for all the support even in the sadest parts you are there for each other. You have made my hopes for Shelby's future so much more positive. Sorry this is so long. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2001 Report Share Posted May 17, 2001 You might also want to go to CYSTIC-L@... there are a great many links there that will really help you .Best wishes. I ams a grandmom too.My Grddaughter is 16+ and doing very well . Getting ready to go off to college.plays all school team sports ---and excels.etc. Your wee on will be fine .todays world is really working on treatments as well as a cure.My gals name is ERIN. LOVE & HUGS, grandmomBEV New to List I am glad to find some people on this list from UK. I am from Hertfordshire. My granddaughter Shelby was born November 16th 2000. Diagnosed on 9th February. She has been attending the Royal Brompton but we are not too happy with them as they admitted her for a tummy bug called C.Dif. (This is short for something longer). Whilst she was there she had throat and nasal swabs done and at first they said they were clear then called us back after she had been sent home to say she had pseudomonas. She is on a nebuliser at the moment and does not like it much. Sometimes it takes two of us to get her to sit still and not struggle. The Teletubbies worked for a while but now she fights us. Any ideas? Her mother Louise, does not have a computer. She is also a single mum. I need to know (in plain english) all I can about CF and so I surf the web a lot. I find most of it goes over my head as you all seem to know such a lot about it all. I have learnt quite a bit by just reading the two groups I subscribe to. Thank you all for all the support even in the sadest parts you are there for each other. You have made my hopes for Shelby's future so much more positive. Sorry this is so long. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2001 Report Share Posted May 17, 2001 Shelby is a lovely name, I loved it from Steel Magnolias and that was one of the names Eilish might have had in our list of names. New To List > Thanks you Torsten for telling me about this list. > > I am the grandmother of Shelby who is 6 months old. > She was diagnosed with CF in February. > I have so many questions to ask that it would take too long > on this note. > > I live in UK - Hertfordshire. > > - please tell me how you transferred to Addenbrookes. > We were thinking of transferring to another CF Centre due to lack of confidence in the control of cross infection with the one we are attending at the moment. > > Shelbys Mum, my daughter (Louise) does not have a computer and is a single parent. As she has enough to cope with on a day to day basis she is not into all the questions I have. > > Much of the information I find on the www is too technical for me. Is there anywhere I can go to get the info in plain english. i.e. what exactly is pseudomonas, and can it be irradicated permanently. We were told she could have caught it from our " kitchen sink " !! Is this true? If so how do we protect her from it. She was clear when she went into hospital so we are convinced that is where she picked it up. > > Margaret > Grandma of Shelby 6 month wcf > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2001 Report Share Posted May 18, 2001 Hi Margaret, Glad to talk to a fellow Brit. When Harry had PA he hated the nebs so we simply waited until he was asleep and did it then. Most infants don't seem to wake just after a feed. Anyway it worked for us so why not give it a go. Barry Father of Harry 7 months wcf and Jack 5 1/2 ncf New to List I am glad to find some people on this list from UK. I am from Hertfordshire. My granddaughter Shelby was born November 16th 2000. Diagnosed on 9th February. She has been attending the Royal Brompton but we are not too happy with them as they admitted her for a tummy bug called C.Dif. (This is short for something longer). Whilst she was there she had throat and nasal swabs done and at first they said they were clear then called us back after she had been sent home to say she had pseudomonas. She is on a nebuliser at the moment and does not like it much. Sometimes it takes two of us to get her to sit still and not struggle. The Teletubbies worked for a while but now she fights us. Any ideas? Her mother Louise, does not have a computer. She is also a single mum. I need to know (in plain english) all I can about CF and so I surf the web a lot. I find most of it goes over my head as you all seem to know such a lot about it all. I have learnt quite a bit by just reading the two groups I subscribe to. Thank you all for all the support even in the sadest parts you are there for each other. You have made my hopes for Shelby's future so much more positive. Sorry this is so long. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2001 Report Share Posted May 18, 2001 Hi Margaret, Glad to talk to a fellow Brit. When Harry had PA he hated the nebs so we simply waited until he was asleep and did it then. Most infants don't seem to wake just after a feed. Anyway it worked for us so why not give it a go. Barry Father of Harry 7 months wcf and Jack 5 1/2 ncf New to List I am glad to find some people on this list from UK. I am from Hertfordshire. My granddaughter Shelby was born November 16th 2000. Diagnosed on 9th February. She has been attending the Royal Brompton but we are not too happy with them as they admitted her for a tummy bug called C.Dif. (This is short for something longer). Whilst she was there she had throat and nasal swabs done and at first they said they were clear then called us back after she had been sent home to say she had pseudomonas. She is on a nebuliser at the moment and does not like it much. Sometimes it takes two of us to get her to sit still and not struggle. The Teletubbies worked for a while but now she fights us. Any ideas? Her mother Louise, does not have a computer. She is also a single mum. I need to know (in plain english) all I can about CF and so I surf the web a lot. I find most of it goes over my head as you all seem to know such a lot about it all. I have learnt quite a bit by just reading the two groups I subscribe to. Thank you all for all the support even in the sadest parts you are there for each other. You have made my hopes for Shelby's future so much more positive. Sorry this is so long. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2001 Report Share Posted May 18, 2001 Hi Margaret, Glad to talk to a fellow Brit. When Harry had PA he hated the nebs so we simply waited until he was asleep and did it then. Most infants don't seem to wake just after a feed. Anyway it worked for us so why not give it a go. Barry Father of Harry 7 months wcf and Jack 5 1/2 ncf New to List I am glad to find some people on this list from UK. I am from Hertfordshire. My granddaughter Shelby was born November 16th 2000. Diagnosed on 9th February. She has been attending the Royal Brompton but we are not too happy with them as they admitted her for a tummy bug called C.Dif. (This is short for something longer). Whilst she was there she had throat and nasal swabs done and at first they said they were clear then called us back after she had been sent home to say she had pseudomonas. She is on a nebuliser at the moment and does not like it much. Sometimes it takes two of us to get her to sit still and not struggle. The Teletubbies worked for a while but now she fights us. Any ideas? Her mother Louise, does not have a computer. She is also a single mum. I need to know (in plain english) all I can about CF and so I surf the web a lot. I find most of it goes over my head as you all seem to know such a lot about it all. I have learnt quite a bit by just reading the two groups I subscribe to. Thank you all for all the support even in the sadest parts you are there for each other. You have made my hopes for Shelby's future so much more positive. Sorry this is so long. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2001 Report Share Posted May 18, 2001 Dear , im so very sorry to hear your sad news , our thoughts and support are here for you, any time you need natasha mum of Marc 9 wo/cf, Jake & Jordan 7 w/cf and Dee-anna 4 wo.cf --- seashore_2nz@... wrote: <HR> <html><body> <tt> My name is .<BR> I live in New Zealand.<BR> I am a solo Mum (23yrs)to two sons.<BR> 25yrs nocf.<BR> 23yrs pwcf.<BR> died, at home, on 17 April 2001.<BR> He was my youngest son; my confidant; <BR> my friend; my soul-mate.<BR> I miss him very much.<BR> <BR> </tt> <br> <!-- |**|begin egp html banner|**| --> <table border=0 cellspacing=0 cellpadding=2> <tr bgcolor=#FFFFCC> <td align=center><font size= " -1 " color=#003399><b> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2001 Report Share Posted May 18, 2001 << Glad to talk to a fellow Brit. When Harry had PA he hated the nebs so we > simply waited until he was asleep and did it then. Most infants don't seem > to wake just after a feed. Anyway it worked for us so why not give it a go. >> This is very true, it is what we do, too....plus, it has the added advantage that they are less likely to cough after tobi...at this age, teach them to cough after pulmozyme and they are confused and think they are too cough after all nebs...and tobi, you don't want them to cough out if possible... Jen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2001 Report Share Posted May 19, 2001 We do that too. However she doesn't sleep much during the day so the morning one becomes a problem. Thanks for the tip though. She seems to have settled down a bit. She may be only six months old but knows when we mean business. New to List > > > I am glad to find some people on this list from UK. I am from Hertfordshire. > My granddaughter Shelby was born November 16th 2000. > Diagnosed on 9th February. She has been attending the Royal Brompton but we > are not too happy with them as they admitted her for a tummy bug called > C.Dif. (This is short for something longer). Whilst she was there she had > throat and nasal swabs done and at first they said they were clear then > called us back after she had been sent home to say she had pseudomonas. > > She is on a nebuliser at the moment and does not like it much. Sometimes it > takes two of us to get her to sit still and not struggle. The Teletubbies > worked for a while but now she fights us. Any ideas? > > Her mother Louise, does not have a computer. She is also a single mum. > > I need to know (in plain english) all I can about CF and so I surf the web a > lot. I find most of it goes over my head as you all seem to know such a lot > about it all. I have learnt quite a bit by just reading the two groups I > subscribe to. > > Thank you all for all the support even in the sadest parts you are there for > each other. You have made my hopes for Shelby's future so much more > positive. > > Sorry this is so long. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2001 Report Share Posted May 19, 2001 Hi , welcome to the list and my deepest condolescenses to your son's passing. Your age is a typo, right? Bye Torsten, dad of Fiona 4wcf e-mail: aberdeen95@... I live in New Zealand. I am a solo Mum (23yrs)to two sons. 25yrs nocf. 23yrs pwcf. died, at home, on 17 April 2001. He was my youngest son; my confidant; my friend; my soul-mate. I miss him very much. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2001 Report Share Posted May 19, 2001 Hi , welcome to the list and my deepest condolescenses to your son's passing. Your age is a typo, right? Bye Torsten, dad of Fiona 4wcf e-mail: aberdeen95@... I live in New Zealand. I am a solo Mum (23yrs)to two sons. 25yrs nocf. 23yrs pwcf. died, at home, on 17 April 2001. He was my youngest son; my confidant; my friend; my soul-mate. I miss him very much. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2001 Report Share Posted May 19, 2001 I THINK she meant she was a solo mom for all those years.--raising her sons herself ???????? maybe I am wrong also. :): LOVE, GRDMB Re: New to List Hi , welcome to the list and my deepest condolescenses to your son's passing. Your age is a typo, right? Bye Torsten, dad of Fiona 4wcf e-mail: aberdeen95@... I live in New Zealand. I am a solo Mum (23yrs)to two sons. 25yrs nocf. 23yrs pwcf. died, at home, on 17 April 2001. He was my youngest son; my confidant; my friend; my soul-mate. I miss him very much. 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. -------------------------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2001 Report Share Posted May 19, 2001 I THINK she meant she was a solo mom for all those years.--raising her sons herself ???????? maybe I am wrong also. :): LOVE, GRDMB Re: New to List Hi , welcome to the list and my deepest condolescenses to your son's passing. Your age is a typo, right? Bye Torsten, dad of Fiona 4wcf e-mail: aberdeen95@... I live in New Zealand. I am a solo Mum (23yrs)to two sons. 25yrs nocf. 23yrs pwcf. died, at home, on 17 April 2001. He was my youngest son; my confidant; my friend; my soul-mate. I miss him very much. 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. -------------------------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2001 Report Share Posted May 22, 2001 Hello Margaret I transferred Lydia to Addenbrookes by asking my GP to write to them and make the request on my behalf. He did it willingly and Addenbrookes accepted the request immediately. I just felt that Addenbrookes is the flagship (UK) in terms of paediatric care, research, training etc...The team their are excellent. Pseudomonas is a common bug that can colonize in the mucus which sticks to the lungs of a person with CF. It is treated very agressivley with 14 days intraveneous antibiotics. Although I have no proof I am sure that Lydia picked up a pseudomonas after a visit to Colchesrter hospital - I was later told by a CF specialist that doctors' stethoscopes are the most frequent carriers of this bug! Please let me know if I can help you and your daughter further, I fully understand the emotional, practical and physical implications of having a young child with CF. Take care Tracey New To List > Thanks you Torsten for telling me about this list. > > I am the grandmother of Shelby who is 6 months old. > She was diagnosed with CF in February. > I have so many questions to ask that it would take too long > on this note. > > I live in UK - Hertfordshire. > > - please tell me how you transferred to Addenbrookes. > We were thinking of transferring to another CF Centre due to lack of confidence in the control of cross infection with the one we are attending at the moment. > > Shelbys Mum, my daughter (Louise) does not have a computer and is a single parent. As she has enough to cope with on a day to day basis she is not into all the questions I have. > > Much of the information I find on the www is too technical for me. Is there anywhere I can go to get the info in plain english. i.e. what exactly is pseudomonas, and can it be irradicated permanently. We were told she could have caught it from our " kitchen sink " !! Is this true? If so how do we protect her from it. She was clear when she went into hospital so we are convinced that is where she picked it up. > > Margaret > Grandma of Shelby 6 month wcf > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2001 Report Share Posted May 22, 2001 Hello Margaret I transferred Lydia to Addenbrookes by asking my GP to write to them and make the request on my behalf. He did it willingly and Addenbrookes accepted the request immediately. I just felt that Addenbrookes is the flagship (UK) in terms of paediatric care, research, training etc...The team their are excellent. Pseudomonas is a common bug that can colonize in the mucus which sticks to the lungs of a person with CF. It is treated very agressivley with 14 days intraveneous antibiotics. Although I have no proof I am sure that Lydia picked up a pseudomonas after a visit to Colchesrter hospital - I was later told by a CF specialist that doctors' stethoscopes are the most frequent carriers of this bug! Please let me know if I can help you and your daughter further, I fully understand the emotional, practical and physical implications of having a young child with CF. Take care Tracey New To List > Thanks you Torsten for telling me about this list. > > I am the grandmother of Shelby who is 6 months old. > She was diagnosed with CF in February. > I have so many questions to ask that it would take too long > on this note. > > I live in UK - Hertfordshire. > > - please tell me how you transferred to Addenbrookes. > We were thinking of transferring to another CF Centre due to lack of confidence in the control of cross infection with the one we are attending at the moment. > > Shelbys Mum, my daughter (Louise) does not have a computer and is a single parent. As she has enough to cope with on a day to day basis she is not into all the questions I have. > > Much of the information I find on the www is too technical for me. Is there anywhere I can go to get the info in plain english. i.e. what exactly is pseudomonas, and can it be irradicated permanently. We were told she could have caught it from our " kitchen sink " !! Is this true? If so how do we protect her from it. She was clear when she went into hospital so we are convinced that is where she picked it up. > > Margaret > Grandma of Shelby 6 month wcf > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2001 Report Share Posted May 22, 2001 Hello Margaret I transferred Lydia to Addenbrookes by asking my GP to write to them and make the request on my behalf. He did it willingly and Addenbrookes accepted the request immediately. I just felt that Addenbrookes is the flagship (UK) in terms of paediatric care, research, training etc...The team their are excellent. Pseudomonas is a common bug that can colonize in the mucus which sticks to the lungs of a person with CF. It is treated very agressivley with 14 days intraveneous antibiotics. Although I have no proof I am sure that Lydia picked up a pseudomonas after a visit to Colchesrter hospital - I was later told by a CF specialist that doctors' stethoscopes are the most frequent carriers of this bug! Please let me know if I can help you and your daughter further, I fully understand the emotional, practical and physical implications of having a young child with CF. Take care Tracey New To List > Thanks you Torsten for telling me about this list. > > I am the grandmother of Shelby who is 6 months old. > She was diagnosed with CF in February. > I have so many questions to ask that it would take too long > on this note. > > I live in UK - Hertfordshire. > > - please tell me how you transferred to Addenbrookes. > We were thinking of transferring to another CF Centre due to lack of confidence in the control of cross infection with the one we are attending at the moment. > > Shelbys Mum, my daughter (Louise) does not have a computer and is a single parent. As she has enough to cope with on a day to day basis she is not into all the questions I have. > > Much of the information I find on the www is too technical for me. Is there anywhere I can go to get the info in plain english. i.e. what exactly is pseudomonas, and can it be irradicated permanently. We were told she could have caught it from our " kitchen sink " !! Is this true? If so how do we protect her from it. She was clear when she went into hospital so we are convinced that is where she picked it up. > > Margaret > Grandma of Shelby 6 month wcf > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2001 Report Share Posted May 22, 2001 Hello again I understand what you're saying and found the CF Trust a very good source of information. If you contact them they will send you a new parent pack which contains booklets, audio tapes etc..Their phone number is 0. Lydia also hates her nebuliser. I find it very upsetting to hold/restrain her when she needs to use it. She normally falls asleep crying when I have to use it. New to List > I am glad to find some people on this list from UK. I am from Hertfordshire. > My granddaughter Shelby was born November 16th 2000. > Diagnosed on 9th February. She has been attending the Royal Brompton but we are not too happy with them as they admitted her for a tummy bug called C.Dif. (This is short for something longer). Whilst she was there she had throat and nasal swabs done and at first they said they were clear then called us back after she had been sent home to say she had pseudomonas. > > She is on a nebuliser at the moment and does not like it much. Sometimes it takes two of us to get her to sit still and not struggle. The Teletubbies worked for a while but now she fights us. Any ideas? > > Her mother Louise, does not have a computer. She is also a single mum. > > I need to know (in plain english) all I can about CF and so I surf the web a lot. I find most of it goes over my head as you all seem to know such a lot about it all. I have learnt quite a bit by just reading the two groups I subscribe to. > > Thank you all for all the support even in the sadest parts you are there for each other. You have made my hopes for Shelby's future so much more positive. > > Sorry this is so long. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2001 Report Share Posted May 22, 2001 Hello again I understand what you're saying and found the CF Trust a very good source of information. If you contact them they will send you a new parent pack which contains booklets, audio tapes etc..Their phone number is 0. Lydia also hates her nebuliser. I find it very upsetting to hold/restrain her when she needs to use it. She normally falls asleep crying when I have to use it. New to List > I am glad to find some people on this list from UK. I am from Hertfordshire. > My granddaughter Shelby was born November 16th 2000. > Diagnosed on 9th February. She has been attending the Royal Brompton but we are not too happy with them as they admitted her for a tummy bug called C.Dif. (This is short for something longer). Whilst she was there she had throat and nasal swabs done and at first they said they were clear then called us back after she had been sent home to say she had pseudomonas. > > She is on a nebuliser at the moment and does not like it much. Sometimes it takes two of us to get her to sit still and not struggle. The Teletubbies worked for a while but now she fights us. Any ideas? > > Her mother Louise, does not have a computer. She is also a single mum. > > I need to know (in plain english) all I can about CF and so I surf the web a lot. I find most of it goes over my head as you all seem to know such a lot about it all. I have learnt quite a bit by just reading the two groups I subscribe to. > > Thank you all for all the support even in the sadest parts you are there for each other. You have made my hopes for Shelby's future so much more positive. > > Sorry this is so long. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2001 Report Share Posted May 29, 2001 Natasha Just reading my e-mails as I've been away. I'm so sorry to hear of your son's death. My thoughts and prayers are with you. I also have two boys - one wcf one wocf and am widowed (4 years ago) Be gentle and kind to yourself. Big hug and warm fuzzies Nicky Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2001 Report Share Posted July 13, 2001 --- Sheila L Goff wrote: <HR> <html><body> <tt> Hello,<BR> <BR> I wanted to introduce myself to everybody. & nbsp; I am the mother of two beautiful<BR> girls, ages 4, and 16 months. & nbsp; My 4 year old was just diagnosed with CF last<BR> week. & nbsp; She has suffered from a prolapsed rectum for over two years and has<BR> had problems with her digestive system since birth. & nbsp; My 16 month old has not<BR> been tested yet, but I doubt she will test positive. & nbsp; We were relieved to<BR> finally have an answer as to what was wrong with Makenzie, but we were<BR> devastated to find out it was CF. & nbsp; My brain feels like mush from all the<BR> information I have been absorbing. Hi Sheila I was also devastated when Ned's mother rang in Feb to tell me of his belated diagnoses.I had only vaguely heard of Cystic Fibrosis. Something about those 2 words. They spelt fatal in my brain. I wish they would call it something like 'Cystico' .. much softer sound I too have been trying to gather as much info as possible and passing on to my son. He is 21.I of course cant tell him what to do....just pass him on the facts and encourage. He seems to have decided to now live with all the passion he can muster Tony _____________________________________________________________________________ http://messenger.yahoo.com.au - Yahoo! Messenger - Voice chat, mail alerts, stock quotes and favourite news and lots more! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2001 Report Share Posted July 13, 2001 --- Sheila L Goff wrote: <HR> <html><body> <tt> Hello,<BR> <BR> I wanted to introduce myself to everybody. & nbsp; I am the mother of two beautiful<BR> girls, ages 4, and 16 months. & nbsp; My 4 year old was just diagnosed with CF last<BR> week. & nbsp; She has suffered from a prolapsed rectum for over two years and has<BR> had problems with her digestive system since birth. & nbsp; My 16 month old has not<BR> been tested yet, but I doubt she will test positive. & nbsp; We were relieved to<BR> finally have an answer as to what was wrong with Makenzie, but we were<BR> devastated to find out it was CF. & nbsp; My brain feels like mush from all the<BR> information I have been absorbing. Hi Sheila I was also devastated when Ned's mother rang in Feb to tell me of his belated diagnoses.I had only vaguely heard of Cystic Fibrosis. Something about those 2 words. They spelt fatal in my brain. I wish they would call it something like 'Cystico' .. much softer sound I too have been trying to gather as much info as possible and passing on to my son. He is 21.I of course cant tell him what to do....just pass him on the facts and encourage. He seems to have decided to now live with all the passion he can muster Tony _____________________________________________________________________________ http://messenger.yahoo.com.au - Yahoo! Messenger - Voice chat, mail alerts, stock quotes and favourite news and lots more! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2001 Report Share Posted July 13, 2001 Welcome Sheila, The people on this list are very kind and supportive. My granddaughter Shelby was diagnosed in February at 3 months old. I remember how completely lost and frightened I was. This list (and others) certainly helps so keep reading. Margaret. New to List > Hello, > > I wanted to introduce myself to everybody. I am the mother of two beautiful > girls, ages 4, and 16 months. My 4 year old was just diagnosed with CF last > week. She has suffered from a prolapsed rectum for over two years and has > had problems with her digestive system since birth. My 16 month old has not > been tested yet, but I doubt she will test positive. We were relieved to > finally have an answer as to what was wrong with Makenzie, but we were > devastated to find out it was CF. My brain feels like mush from all the > information I have been absorbing. I hope to learn a lot through all of > you. I have a lot of questions that I am sure some of you can help me > with. I won't dump them all on you at once. I know that my doctor said > they are so close to a cure, but how close is close? And, what is the > average age these days that people with CF are living to? I hope to hear > from you all soon. Thanks. > > Sheila Goff > > > > 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. > > -------------------------------------------------- > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2001 Report Share Posted July 13, 2001 Welcome Sheila, The people on this list are very kind and supportive. My granddaughter Shelby was diagnosed in February at 3 months old. I remember how completely lost and frightened I was. This list (and others) certainly helps so keep reading. Margaret. New to List > Hello, > > I wanted to introduce myself to everybody. I am the mother of two beautiful > girls, ages 4, and 16 months. My 4 year old was just diagnosed with CF last > week. She has suffered from a prolapsed rectum for over two years and has > had problems with her digestive system since birth. My 16 month old has not > been tested yet, but I doubt she will test positive. We were relieved to > finally have an answer as to what was wrong with Makenzie, but we were > devastated to find out it was CF. My brain feels like mush from all the > information I have been absorbing. I hope to learn a lot through all of > you. I have a lot of questions that I am sure some of you can help me > with. I won't dump them all on you at once. I know that my doctor said > they are so close to a cure, but how close is close? And, what is the > average age these days that people with CF are living to? I hope to hear > from you all soon. Thanks. > > Sheila Goff > > > > 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. > > -------------------------------------------------- > > > Quote Link to comment Share on other sites More sharing options...
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