<span style="color: rgb(153, 0, 102);">@mom2lillian....I do not wish to thow this thread off, but after reading your very interesting post. I noticed in your signature you state the following;<br><br>"CANDIDA Sleuthing raised my FEV 15% now @ 114%"<br><font size="4"><br></font><font style="font-family: times new roman; color: rgb(153, 0, 102);" size="4">Could you message me and tell me more please? Much appreciated.....</font><br>
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What is atypical cf?
- Thread starter Lisapatg
- Start date
S
Swallowtail66
Guest
I, too, get treated differently because I am "atypical", even by the CF clinic. I have sinusitis, nasal polyps, heart arrythmias and murmurs, a Chiari 1 with 5mm of brain sticking down my neck, arthritis, bone spurs, asthma, endless allergies, migraines, fibromyalgia, my guts HATE me (stomach pain, pancreatic insufficiency, slow motility, constant constipation, bloating, nausea, and pain!), a fat infused liver, and high insulin numbers even on a very low sugar diet and metformin. I think I am leaving something out, but that is enough. My FEV1 numbers are in the 90's and as long as I take my oral steriods my asthma numbers are good enough. I have two M470V's a 5T and a 7T so it took a geneticist to confirm that I needed treatment since I didn't have any typical mutations. I feel like I am seen as overreacting instead of someone who is really sick. What people don't realize is that I am so exhausted and overwhelmed with almost constant pain and generally feeling unwell that it takes a daily effort to do it all over again. I know I am "Mild" and I am grateful, but a mild train wreck is still a train wreck. My doctors do agree that I may decline at some point. I don't think they have noticed, but it is taking much more effort to achieve "mild" than it used to take. Well, enough of the pity party. It is just that I am going to be angry the day they tell me I am "really" sick and have "real" CF.
S
Swallowtail66
Guest
I, too, get treated differently because I am "atypical", even by the CF clinic. I have sinusitis, nasal polyps, heart arrythmias and murmurs, a Chiari 1 with 5mm of brain sticking down my neck, arthritis, bone spurs, asthma, endless allergies, migraines, fibromyalgia, my guts HATE me (stomach pain, pancreatic insufficiency, slow motility, constant constipation, bloating, nausea, and pain!), a fat infused liver, and high insulin numbers even on a very low sugar diet and metformin. I think I am leaving something out, but that is enough. My FEV1 numbers are in the 90's and as long as I take my oral steriods my asthma numbers are good enough. I have two M470V's a 5T and a 7T so it took a geneticist to confirm that I needed treatment since I didn't have any typical mutations. I feel like I am seen as overreacting instead of someone who is really sick. What people don't realize is that I am so exhausted and overwhelmed with almost constant pain and generally feeling unwell that it takes a daily effort to do it all over again. I know I am "Mild" and I am grateful, but a mild train wreck is still a train wreck.My doctors do agree that Imay decline at some point. I don't think they havenoticed, but it is taking much more effort to achieve"mild" than it used to take. Well, enough of the pity party.It is just that I am going to be angry the day they tell me I am "really" sick and have "real" CF.
S
Swallowtail66
Guest
<BR>I, too, get treated differently because I am "atypical", even by the CF clinic. I have sinusitis, nasal polyps, heart arrythmias and murmurs, a Chiari 1 with 5mm of brain sticking down my neck, arthritis, bone spurs, asthma, endless allergies, migraines, fibromyalgia, my guts HATE me (stomach pain, pancreatic insufficiency, slow motility, constant constipation, bloating, nausea, and pain!), a fat infused liver, and high insulin numbers even on a very low sugar diet and metformin. I think I am leaving something out, but that is enough. My FEV1 numbers are in the 90's and as long as I take my oral steriods my asthma numbers are good enough. I have two M470V's a 5T and a 7T so it took a geneticist to confirm that I needed treatment since I didn't have any typical mutations. I feel like I am seen as overreacting instead of someone who is really sick. What people don't realize is that I am so exhausted and overwhelmed with almost constant pain and generally feeling unwell that it takes a daily effort to do it all over again. I know I am "Mild" and I am grateful, but a mild train wreck is still a train wreck.My doctors do agree that Imay decline at some point. I don't think they havenoticed, but it is taking much more effort to achieve"mild" than it used to take. Well, enough of the pity party.It is just that I am going to be angry the day they tell me I am "really" sick and have "real" CF.
My Daughter has Atypical CF. She was diagnosed at 6, borderline sweat test, pancreatic sufficient, her one mutation is not listed as disease causing....but, with that being said...She has cultured staph, PA, had a few hospitalizations for pneumonia and her FEV's are all over the place, she takes Pulmozyme, albuterol, flovent ,Vest daily, (just finished Tobi and Cipro) ALWAYS has a junky cough and sinus problems.
Call it whatever you may (CF/Atypical CF) I make sure all of her treatments are done on a daily basis. I don't want to HEAR what her lungs would be like without them.
Marie
Call it whatever you may (CF/Atypical CF) I make sure all of her treatments are done on a daily basis. I don't want to HEAR what her lungs would be like without them.
Marie
My Daughter has Atypical CF. She was diagnosed at 6, borderline sweat test, pancreatic sufficient, her one mutation is not listed as disease causing....but, with that being said...She has cultured staph, PA, had a few hospitalizations for pneumonia and her FEV's are all over the place, she takes Pulmozyme, albuterol, flovent ,Vest daily, (just finished Tobi and Cipro) ALWAYS has a junky cough and sinus problems.
Call it whatever you may (CF/Atypical CF) I make sure all of her treatments are done on a daily basis. I don't want to HEAR what her lungs would be like without them.
Marie
Call it whatever you may (CF/Atypical CF) I make sure all of her treatments are done on a daily basis. I don't want to HEAR what her lungs would be like without them.
Marie
My Daughter has Atypical CF. She was diagnosed at 6, borderline sweat test, pancreatic sufficient, her one mutation is not listed as disease causing....but, with that being said...She has cultured staph, PA, had a few hospitalizations for pneumonia and her FEV's are all over the place, she takes Pulmozyme, albuterol, flovent ,Vest daily, (just finished Tobi and Cipro) ALWAYS has a junky cough and sinus problems.
<br />Call it whatever you may (CF/Atypical CF) I make sure all of her treatments are done on a daily basis. I don't want to HEAR what her lungs would be like without them.
<br />
<br />
<br />Marie
<br />Call it whatever you may (CF/Atypical CF) I make sure all of her treatments are done on a daily basis. I don't want to HEAR what her lungs would be like without them.
<br />
<br />
<br />Marie
Did many of you with the "Atypical CF" diagnosis go to a number of doctor's before that diagnosis was given. Many of you know my daughter's story who now 12 has no diagnosis at all. She has a number of hospital stays for pneumonia 2 of which were this past year, and her FEV1 last December was 55%. She had 1 NPD test that was postive for CF and one that was not positive for CF. Her sweat tests are borderline. She has 1 known disease causing mutation 2 polymorphisms, and 7T/9T variants. She is pancreatis sufficient. She has surgery to remove nasal polyps last week. She is failure to thrive. She cultures staph a, and pneumocystic bacteria.
To me what the final key is she has been doing "CF" treatments since April. During this time we decreased her "asthma" meds form Flovent 22 2 puffs 2 times a day down to Flovent 44 1 puff 2 times a day. Well, a miracle happened with the "CF" treatments. We now do vest 2 times daily, Hypertonic Saline, high dose antibiotics during illness, and her FEV1 last week was 105%. Previously her lifetime high was 80%. Her life has changed totally for the better due to "CF" treatments and she has not been diagnosis. I am terrified of this winter and going to an ER with NO diagnosis. She won't be taken seriously at all. I think those with an Atypical CF dx are better off than my daughter with no diagnosis. However, I completely agree that the disease can change at any time and so it is an insurance nightmare. Meanwhile, without an Atypical option, such as at the hospital we go to, it leaves children like mine with no diagnosis at all.
Meanwhile, I was told she doesn't have CFTR related metabolic disorder because she does have CF symptoms. Now what? Should I try another CF center?
To me what the final key is she has been doing "CF" treatments since April. During this time we decreased her "asthma" meds form Flovent 22 2 puffs 2 times a day down to Flovent 44 1 puff 2 times a day. Well, a miracle happened with the "CF" treatments. We now do vest 2 times daily, Hypertonic Saline, high dose antibiotics during illness, and her FEV1 last week was 105%. Previously her lifetime high was 80%. Her life has changed totally for the better due to "CF" treatments and she has not been diagnosis. I am terrified of this winter and going to an ER with NO diagnosis. She won't be taken seriously at all. I think those with an Atypical CF dx are better off than my daughter with no diagnosis. However, I completely agree that the disease can change at any time and so it is an insurance nightmare. Meanwhile, without an Atypical option, such as at the hospital we go to, it leaves children like mine with no diagnosis at all.
Meanwhile, I was told she doesn't have CFTR related metabolic disorder because she does have CF symptoms. Now what? Should I try another CF center?
Did many of you with the "Atypical CF" diagnosis go to a number of doctor's before that diagnosis was given. Many of you know my daughter's story who now 12 has no diagnosis at all. She has a number of hospital stays for pneumonia 2 of which were this past year, and her FEV1 last December was 55%. She had 1 NPD test that was postive for CF and one that was not positive for CF. Her sweat tests are borderline. She has 1 known disease causing mutation 2 polymorphisms, and 7T/9T variants. She is pancreatis sufficient. She has surgery to remove nasal polyps last week. She is failure to thrive. She cultures staph a, and pneumocystic bacteria.
To me what the final key is she has been doing "CF" treatments since April. During this time we decreased her "asthma" meds form Flovent 22 2 puffs 2 times a day down to Flovent 44 1 puff 2 times a day. Well, a miracle happened with the "CF" treatments. We now do vest 2 times daily, Hypertonic Saline, high dose antibiotics during illness, and her FEV1 last week was 105%. Previously her lifetime high was 80%. Her life has changed totally for the better due to "CF" treatments and she has not been diagnosis. I am terrified of this winter and going to an ER with NO diagnosis. She won't be taken seriously at all. I think those with an Atypical CF dx are better off than my daughter with no diagnosis. However, I completely agree that the disease can change at any time and so it is an insurance nightmare. Meanwhile, without an Atypical option, such as at the hospital we go to, it leaves children like mine with no diagnosis at all.
Meanwhile, I was told she doesn't have CFTR related metabolic disorder because she does have CF symptoms. Now what? Should I try another CF center?
To me what the final key is she has been doing "CF" treatments since April. During this time we decreased her "asthma" meds form Flovent 22 2 puffs 2 times a day down to Flovent 44 1 puff 2 times a day. Well, a miracle happened with the "CF" treatments. We now do vest 2 times daily, Hypertonic Saline, high dose antibiotics during illness, and her FEV1 last week was 105%. Previously her lifetime high was 80%. Her life has changed totally for the better due to "CF" treatments and she has not been diagnosis. I am terrified of this winter and going to an ER with NO diagnosis. She won't be taken seriously at all. I think those with an Atypical CF dx are better off than my daughter with no diagnosis. However, I completely agree that the disease can change at any time and so it is an insurance nightmare. Meanwhile, without an Atypical option, such as at the hospital we go to, it leaves children like mine with no diagnosis at all.
Meanwhile, I was told she doesn't have CFTR related metabolic disorder because she does have CF symptoms. Now what? Should I try another CF center?
Did many of you with the "Atypical CF" diagnosis go to a number of doctor's before that diagnosis was given. Many of you know my daughter's story who now 12 has no diagnosis at all. She has a number of hospital stays for pneumonia 2 of which were this past year, and her FEV1 last December was 55%. She had 1 NPD test that was postive for CF and one that was not positive for CF. Her sweat tests are borderline. She has 1 known disease causing mutation 2 polymorphisms, and 7T/9T variants. She is pancreatis sufficient. She has surgery to remove nasal polyps last week. She is failure to thrive. She cultures staph a, and pneumocystic bacteria.
<br />
<br />To me what the final key is she has been doing "CF" treatments since April. During this time we decreased her "asthma" meds form Flovent 22 2 puffs 2 times a day down to Flovent 44 1 puff 2 times a day. Well, a miracle happened with the "CF" treatments. We now do vest 2 times daily, Hypertonic Saline, high dose antibiotics during illness, and her FEV1 last week was 105%. Previously her lifetime high was 80%. Her life has changed totally for the better due to "CF" treatments and she has not been diagnosis. I am terrified of this winter and going to an ER with NO diagnosis. She won't be taken seriously at all. I think those with an Atypical CF dx are better off than my daughter with no diagnosis. However, I completely agree that the disease can change at any time and so it is an insurance nightmare. Meanwhile, without an Atypical option, such as at the hospital we go to, it leaves children like mine with no diagnosis at all.
<br />
<br />Meanwhile, I was told she doesn't have CFTR related metabolic disorder because she does have CF symptoms. Now what? Should I try another CF center?
<br />
<br />To me what the final key is she has been doing "CF" treatments since April. During this time we decreased her "asthma" meds form Flovent 22 2 puffs 2 times a day down to Flovent 44 1 puff 2 times a day. Well, a miracle happened with the "CF" treatments. We now do vest 2 times daily, Hypertonic Saline, high dose antibiotics during illness, and her FEV1 last week was 105%. Previously her lifetime high was 80%. Her life has changed totally for the better due to "CF" treatments and she has not been diagnosis. I am terrified of this winter and going to an ER with NO diagnosis. She won't be taken seriously at all. I think those with an Atypical CF dx are better off than my daughter with no diagnosis. However, I completely agree that the disease can change at any time and so it is an insurance nightmare. Meanwhile, without an Atypical option, such as at the hospital we go to, it leaves children like mine with no diagnosis at all.
<br />
<br />Meanwhile, I was told she doesn't have CFTR related metabolic disorder because she does have CF symptoms. Now what? Should I try another CF center?
S
Swallowtail66
Guest
Try another and another until you get what you need. A geneticist might be on your side as well. I don't know what side of the country you are on, but the Medical Univesity of South Carolina has taken care of my children for eight years. One of them only has 1 mutation, a M470V polymorphism and 5T/9T variants. The other has the same mutation, a new mutation that has never been seen, but assumed to cause disease since she is sick, a M470V and 7t/9T variant. I have two M470V's and a 5T/7T - without a geneticist, I might never have gotten the help I needed.
S
Swallowtail66
Guest
Try another and another until you get what you need. A geneticist might be on your side as well. I don't know what side of the country you are on, but the Medical Univesity of South Carolina has taken care of my children for eight years. One of them only has 1 mutation,a M470V polymorphism and 5T/9T variants. The other has the same mutation, a new mutation that has never been seen, but assumed to cause disease since she is sick, a M470V and 7t/9T variant. I have two M470V's and a 5T/7T - without a geneticist, I might never have gotten the help I needed.
S
Swallowtail66
Guest
<BR>Try another and another until you get what you need. A geneticist might be on your side as well. I don't know what side of the country you are on, but the Medical Univesity of South Carolina has taken care of my children for eight years. One of them only has 1 mutation,a M470V polymorphism and 5T/9T variants. The other has the same mutation, a new mutation that has never been seen, but assumed to cause disease since she is sick, a M470V and 7t/9T variant. I have two M470V's and a 5T/7T - without a geneticist, I might never have gotten the help I needed.