Any thoughts on a good CF center in MO? There are two in St. Louis, one in Columbia and one in KC, all about the same 3 hour distance from me. We are doing preliminary testing with our daughter and I want to go to a good place. I know they are all accredited, but does anyone have anictodal evidence of caring staff, knowledgable and a high standard of care? thanks.
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Missouri Center
- Thread starter anonymous
- Start date
Any thoughts on a good CF center in MO? There are two in St. Louis, one in Columbia and one in KC, all about the same 3 hour distance from me. We are doing preliminary testing with our daughter and I want to go to a good place. I know they are all accredited, but does anyone have anictodal evidence of caring staff, knowledgable and a high standard of care? thanks.
Any thoughts on a good CF center in MO? There are two in St. Louis, one in Columbia and one in KC, all about the same 3 hour distance from me. We are doing preliminary testing with our daughter and I want to go to a good place. I know they are all accredited, but does anyone have anictodal evidence of caring staff, knowledgable and a high standard of care? thanks.
T
tammykrumrey
Guest
I can speak for St. Louis Children's Hospital. I love the clinic there! Both of my daughters, as well as my nephew, all see Dr. Tom Ferkol who is the director of the CF clinic. He truely is awesome. We have had other doctors, and he is by far the best. He is so good with our children. And he (as well as the rest of the staff) really cares. He has personally even gone with my sister to a meeting at my nephews high school to discuss my nephews health and needs with his teachers, along with two other key people from clinic. He didn't just send a letter and a RN. He is actively involved in our local Cystic Fibrosis Foundation chapter as well. He is also very informed. He has spoken on many occassions across the country regarding the research that he does for CF. Sometimes when I ask a question, the answer is so far above my understanding that I will just have to laugh and ask for it in plain english!
I like that they do have different clinic days for those with B. Cepacia. And my children never, ever, wait more than a few minutes before being placed in a room during appointments to avoid catching bugs from the other CF kids.
I feel that he is agressive in his treatments with the kids. And he is always open to questions (and trust me, I always have questions thanks to this wonderful forum which has given me more insight to CF than what I had ever imagined-sometimes he is surprised about the information that I come in with and is impressed that I have done my research<img src="i/expressions/face-icon-small-smile.gif" border="0">)
Although I cannot speak of the clinic at Cardinal Glennon in St. Louis to any extent, but I do know of others who go there and are also very happy. My nephew used to go to clinic there prior to SLCH, and my sister was happy with his care. But she does like SLCH better. My children have always been at SLCH.
Hope it helps! Good luck with everything. I just could go on about how much I love our clinic, but I am sure that others will have the same experiences in other areas of Missouri as well.
I like that they do have different clinic days for those with B. Cepacia. And my children never, ever, wait more than a few minutes before being placed in a room during appointments to avoid catching bugs from the other CF kids.
I feel that he is agressive in his treatments with the kids. And he is always open to questions (and trust me, I always have questions thanks to this wonderful forum which has given me more insight to CF than what I had ever imagined-sometimes he is surprised about the information that I come in with and is impressed that I have done my research<img src="i/expressions/face-icon-small-smile.gif" border="0">)
Although I cannot speak of the clinic at Cardinal Glennon in St. Louis to any extent, but I do know of others who go there and are also very happy. My nephew used to go to clinic there prior to SLCH, and my sister was happy with his care. But she does like SLCH better. My children have always been at SLCH.
Hope it helps! Good luck with everything. I just could go on about how much I love our clinic, but I am sure that others will have the same experiences in other areas of Missouri as well.
T
tammykrumrey
Guest
I can speak for St. Louis Children's Hospital. I love the clinic there! Both of my daughters, as well as my nephew, all see Dr. Tom Ferkol who is the director of the CF clinic. He truely is awesome. We have had other doctors, and he is by far the best. He is so good with our children. And he (as well as the rest of the staff) really cares. He has personally even gone with my sister to a meeting at my nephews high school to discuss my nephews health and needs with his teachers, along with two other key people from clinic. He didn't just send a letter and a RN. He is actively involved in our local Cystic Fibrosis Foundation chapter as well. He is also very informed. He has spoken on many occassions across the country regarding the research that he does for CF. Sometimes when I ask a question, the answer is so far above my understanding that I will just have to laugh and ask for it in plain english!
I like that they do have different clinic days for those with B. Cepacia. And my children never, ever, wait more than a few minutes before being placed in a room during appointments to avoid catching bugs from the other CF kids.
I feel that he is agressive in his treatments with the kids. And he is always open to questions (and trust me, I always have questions thanks to this wonderful forum which has given me more insight to CF than what I had ever imagined-sometimes he is surprised about the information that I come in with and is impressed that I have done my research<img src="i/expressions/face-icon-small-smile.gif" border="0">)
Although I cannot speak of the clinic at Cardinal Glennon in St. Louis to any extent, but I do know of others who go there and are also very happy. My nephew used to go to clinic there prior to SLCH, and my sister was happy with his care. But she does like SLCH better. My children have always been at SLCH.
Hope it helps! Good luck with everything. I just could go on about how much I love our clinic, but I am sure that others will have the same experiences in other areas of Missouri as well.
I like that they do have different clinic days for those with B. Cepacia. And my children never, ever, wait more than a few minutes before being placed in a room during appointments to avoid catching bugs from the other CF kids.
I feel that he is agressive in his treatments with the kids. And he is always open to questions (and trust me, I always have questions thanks to this wonderful forum which has given me more insight to CF than what I had ever imagined-sometimes he is surprised about the information that I come in with and is impressed that I have done my research<img src="i/expressions/face-icon-small-smile.gif" border="0">)
Although I cannot speak of the clinic at Cardinal Glennon in St. Louis to any extent, but I do know of others who go there and are also very happy. My nephew used to go to clinic there prior to SLCH, and my sister was happy with his care. But she does like SLCH better. My children have always been at SLCH.
Hope it helps! Good luck with everything. I just could go on about how much I love our clinic, but I am sure that others will have the same experiences in other areas of Missouri as well.
T
tammykrumrey
Guest
I can speak for St. Louis Children's Hospital. I love the clinic there! Both of my daughters, as well as my nephew, all see Dr. Tom Ferkol who is the director of the CF clinic. He truely is awesome. We have had other doctors, and he is by far the best. He is so good with our children. And he (as well as the rest of the staff) really cares. He has personally even gone with my sister to a meeting at my nephews high school to discuss my nephews health and needs with his teachers, along with two other key people from clinic. He didn't just send a letter and a RN. He is actively involved in our local Cystic Fibrosis Foundation chapter as well. He is also very informed. He has spoken on many occassions across the country regarding the research that he does for CF. Sometimes when I ask a question, the answer is so far above my understanding that I will just have to laugh and ask for it in plain english!
I like that they do have different clinic days for those with B. Cepacia. And my children never, ever, wait more than a few minutes before being placed in a room during appointments to avoid catching bugs from the other CF kids.
I feel that he is agressive in his treatments with the kids. And he is always open to questions (and trust me, I always have questions thanks to this wonderful forum which has given me more insight to CF than what I had ever imagined-sometimes he is surprised about the information that I come in with and is impressed that I have done my research<img src="i/expressions/face-icon-small-smile.gif" border="0">)
Although I cannot speak of the clinic at Cardinal Glennon in St. Louis to any extent, but I do know of others who go there and are also very happy. My nephew used to go to clinic there prior to SLCH, and my sister was happy with his care. But she does like SLCH better. My children have always been at SLCH.
Hope it helps! Good luck with everything. I just could go on about how much I love our clinic, but I am sure that others will have the same experiences in other areas of Missouri as well.
I like that they do have different clinic days for those with B. Cepacia. And my children never, ever, wait more than a few minutes before being placed in a room during appointments to avoid catching bugs from the other CF kids.
I feel that he is agressive in his treatments with the kids. And he is always open to questions (and trust me, I always have questions thanks to this wonderful forum which has given me more insight to CF than what I had ever imagined-sometimes he is surprised about the information that I come in with and is impressed that I have done my research<img src="i/expressions/face-icon-small-smile.gif" border="0">)
Although I cannot speak of the clinic at Cardinal Glennon in St. Louis to any extent, but I do know of others who go there and are also very happy. My nephew used to go to clinic there prior to SLCH, and my sister was happy with his care. But she does like SLCH better. My children have always been at SLCH.
Hope it helps! Good luck with everything. I just could go on about how much I love our clinic, but I am sure that others will have the same experiences in other areas of Missouri as well.
T
tammykrumrey
Guest
Another thought. I don't know where you are located. I am just guessing maybe the Springfield area since you are about 3 hours from each of the areas you mentioned. But I think that Dr. Ferkol holds a clinic in Springfield?! Maybe you could contact the SLCH office and ask about it. The number is 314-454-2694. Our CF nurse is Amy. I don't know if she could help out, but you could try. I could be wrong, but I think I remember them talking about going to Springfield for clinic appts.
T
tammykrumrey
Guest
Another thought. I don't know where you are located. I am just guessing maybe the Springfield area since you are about 3 hours from each of the areas you mentioned. But I think that Dr. Ferkol holds a clinic in Springfield?! Maybe you could contact the SLCH office and ask about it. The number is 314-454-2694. Our CF nurse is Amy. I don't know if she could help out, but you could try. I could be wrong, but I think I remember them talking about going to Springfield for clinic appts.
T
tammykrumrey
Guest
Another thought. I don't know where you are located. I am just guessing maybe the Springfield area since you are about 3 hours from each of the areas you mentioned. But I think that Dr. Ferkol holds a clinic in Springfield?! Maybe you could contact the SLCH office and ask about it. The number is 314-454-2694. Our CF nurse is Amy. I don't know if she could help out, but you could try. I could be wrong, but I think I remember them talking about going to Springfield for clinic appts.
We also go to Children's. My daughter sees Dr. Cannon and we have been very happy with her. She also is very aggressive, but it has eradicated PA for my daughter so I appreciate that! I would definitely recommend going there. They are just so positive at Children's too. I remember my first day there crying and crying over the CF. They just really made me feel hopeful and realize my daughter can have a pretty normal life and that the medicine will continue to get better and better in her life too. They are great!
Tammy, I was interested to hear that you never have to wait long. We had clinic last week and waited almost an hour! Tough to do with a toddler who wants to put their toys in her mouth. I wonder if that is a difference with Ferkol and Cannon, or if we just had a bad day?!
Zoe, mom to Kate
Tammy, I was interested to hear that you never have to wait long. We had clinic last week and waited almost an hour! Tough to do with a toddler who wants to put their toys in her mouth. I wonder if that is a difference with Ferkol and Cannon, or if we just had a bad day?!
Zoe, mom to Kate
We also go to Children's. My daughter sees Dr. Cannon and we have been very happy with her. She also is very aggressive, but it has eradicated PA for my daughter so I appreciate that! I would definitely recommend going there. They are just so positive at Children's too. I remember my first day there crying and crying over the CF. They just really made me feel hopeful and realize my daughter can have a pretty normal life and that the medicine will continue to get better and better in her life too. They are great!
Tammy, I was interested to hear that you never have to wait long. We had clinic last week and waited almost an hour! Tough to do with a toddler who wants to put their toys in her mouth. I wonder if that is a difference with Ferkol and Cannon, or if we just had a bad day?!
Zoe, mom to Kate
Tammy, I was interested to hear that you never have to wait long. We had clinic last week and waited almost an hour! Tough to do with a toddler who wants to put their toys in her mouth. I wonder if that is a difference with Ferkol and Cannon, or if we just had a bad day?!
Zoe, mom to Kate
We also go to Children's. My daughter sees Dr. Cannon and we have been very happy with her. She also is very aggressive, but it has eradicated PA for my daughter so I appreciate that! I would definitely recommend going there. They are just so positive at Children's too. I remember my first day there crying and crying over the CF. They just really made me feel hopeful and realize my daughter can have a pretty normal life and that the medicine will continue to get better and better in her life too. They are great!
Tammy, I was interested to hear that you never have to wait long. We had clinic last week and waited almost an hour! Tough to do with a toddler who wants to put their toys in her mouth. I wonder if that is a difference with Ferkol and Cannon, or if we just had a bad day?!
Zoe, mom to Kate
Tammy, I was interested to hear that you never have to wait long. We had clinic last week and waited almost an hour! Tough to do with a toddler who wants to put their toys in her mouth. I wonder if that is a difference with Ferkol and Cannon, or if we just had a bad day?!
Zoe, mom to Kate
T
tammykrumrey
Guest
Zoe,
I have met Dr. Cannon and she is a very kind doctor. I went to Jeff City with Dr. Ferkol, Dr. Canon and Amy Rahm as well as with a few other CF parents who serve of the CF Foundation Board to talk with our state representives to push newborn CF screening. During lunch I was able to pick Dr. Cannon's brain regarding B. Cepacia because according to Dr. Ferkol she is the 'expert' on it. My nephew has B. Cepacia, not my daughters.
We were actually at clinic last Wednesday for my younger daughter, and I don't think we ever even sat down. She did her PFT's, then we were taken basically right into a room.
But with that being said, I don't remember ever having to wait very long at all. But maybe a few years ago we did. Maybe it is because both my daughters culture MRSA and my younger one PA. Does Kate culture anything? Maybe they don't 'isolate' her quickly to a room if they have clear cultures? Maybe you should tell Dr. Cannon that you are concerned that you are having to wait too long outside in the waiting room and ask to be taken quickly to keep her from catching anything.
We do have a great clinic here. Sometimes I read some of the stories on these forums about others, and I truely feel blessed to live so close to such a great CF team.
I have met Dr. Cannon and she is a very kind doctor. I went to Jeff City with Dr. Ferkol, Dr. Canon and Amy Rahm as well as with a few other CF parents who serve of the CF Foundation Board to talk with our state representives to push newborn CF screening. During lunch I was able to pick Dr. Cannon's brain regarding B. Cepacia because according to Dr. Ferkol she is the 'expert' on it. My nephew has B. Cepacia, not my daughters.
We were actually at clinic last Wednesday for my younger daughter, and I don't think we ever even sat down. She did her PFT's, then we were taken basically right into a room.
But with that being said, I don't remember ever having to wait very long at all. But maybe a few years ago we did. Maybe it is because both my daughters culture MRSA and my younger one PA. Does Kate culture anything? Maybe they don't 'isolate' her quickly to a room if they have clear cultures? Maybe you should tell Dr. Cannon that you are concerned that you are having to wait too long outside in the waiting room and ask to be taken quickly to keep her from catching anything.
We do have a great clinic here. Sometimes I read some of the stories on these forums about others, and I truely feel blessed to live so close to such a great CF team.
T
tammykrumrey
Guest
Zoe,
I have met Dr. Cannon and she is a very kind doctor. I went to Jeff City with Dr. Ferkol, Dr. Canon and Amy Rahm as well as with a few other CF parents who serve of the CF Foundation Board to talk with our state representives to push newborn CF screening. During lunch I was able to pick Dr. Cannon's brain regarding B. Cepacia because according to Dr. Ferkol she is the 'expert' on it. My nephew has B. Cepacia, not my daughters.
We were actually at clinic last Wednesday for my younger daughter, and I don't think we ever even sat down. She did her PFT's, then we were taken basically right into a room.
But with that being said, I don't remember ever having to wait very long at all. But maybe a few years ago we did. Maybe it is because both my daughters culture MRSA and my younger one PA. Does Kate culture anything? Maybe they don't 'isolate' her quickly to a room if they have clear cultures? Maybe you should tell Dr. Cannon that you are concerned that you are having to wait too long outside in the waiting room and ask to be taken quickly to keep her from catching anything.
We do have a great clinic here. Sometimes I read some of the stories on these forums about others, and I truely feel blessed to live so close to such a great CF team.
I have met Dr. Cannon and she is a very kind doctor. I went to Jeff City with Dr. Ferkol, Dr. Canon and Amy Rahm as well as with a few other CF parents who serve of the CF Foundation Board to talk with our state representives to push newborn CF screening. During lunch I was able to pick Dr. Cannon's brain regarding B. Cepacia because according to Dr. Ferkol she is the 'expert' on it. My nephew has B. Cepacia, not my daughters.
We were actually at clinic last Wednesday for my younger daughter, and I don't think we ever even sat down. She did her PFT's, then we were taken basically right into a room.
But with that being said, I don't remember ever having to wait very long at all. But maybe a few years ago we did. Maybe it is because both my daughters culture MRSA and my younger one PA. Does Kate culture anything? Maybe they don't 'isolate' her quickly to a room if they have clear cultures? Maybe you should tell Dr. Cannon that you are concerned that you are having to wait too long outside in the waiting room and ask to be taken quickly to keep her from catching anything.
We do have a great clinic here. Sometimes I read some of the stories on these forums about others, and I truely feel blessed to live so close to such a great CF team.
T
tammykrumrey
Guest
Zoe,
I have met Dr. Cannon and she is a very kind doctor. I went to Jeff City with Dr. Ferkol, Dr. Canon and Amy Rahm as well as with a few other CF parents who serve of the CF Foundation Board to talk with our state representives to push newborn CF screening. During lunch I was able to pick Dr. Cannon's brain regarding B. Cepacia because according to Dr. Ferkol she is the 'expert' on it. My nephew has B. Cepacia, not my daughters.
We were actually at clinic last Wednesday for my younger daughter, and I don't think we ever even sat down. She did her PFT's, then we were taken basically right into a room.
But with that being said, I don't remember ever having to wait very long at all. But maybe a few years ago we did. Maybe it is because both my daughters culture MRSA and my younger one PA. Does Kate culture anything? Maybe they don't 'isolate' her quickly to a room if they have clear cultures? Maybe you should tell Dr. Cannon that you are concerned that you are having to wait too long outside in the waiting room and ask to be taken quickly to keep her from catching anything.
We do have a great clinic here. Sometimes I read some of the stories on these forums about others, and I truely feel blessed to live so close to such a great CF team.
I have met Dr. Cannon and she is a very kind doctor. I went to Jeff City with Dr. Ferkol, Dr. Canon and Amy Rahm as well as with a few other CF parents who serve of the CF Foundation Board to talk with our state representives to push newborn CF screening. During lunch I was able to pick Dr. Cannon's brain regarding B. Cepacia because according to Dr. Ferkol she is the 'expert' on it. My nephew has B. Cepacia, not my daughters.
We were actually at clinic last Wednesday for my younger daughter, and I don't think we ever even sat down. She did her PFT's, then we were taken basically right into a room.
But with that being said, I don't remember ever having to wait very long at all. But maybe a few years ago we did. Maybe it is because both my daughters culture MRSA and my younger one PA. Does Kate culture anything? Maybe they don't 'isolate' her quickly to a room if they have clear cultures? Maybe you should tell Dr. Cannon that you are concerned that you are having to wait too long outside in the waiting room and ask to be taken quickly to keep her from catching anything.
We do have a great clinic here. Sometimes I read some of the stories on these forums about others, and I truely feel blessed to live so close to such a great CF team.
Thanks Tammy and Zoe. I am frustrated now, because I just checked and Children's is the one center NOT covered by our insurance!!!! ARHGGGGGGG. Cardinal Glennon is, but I am a tad hesitent because i know a family that went there and they wouldn't pursue genetic testing past the 100 panel and the head doc there acted like that is not really an option and said "that testing is only done in research centers". I am not saying they won't be good with my daughter, but want to know that where we go will be willing to do every possible test and proceadure. I am wondering what the center in Columbia is like, because they are attached to Missouri University, so I would think they are research focused. And yes, we are in the Springfield area, but don't want to use the local hospital for testing because they aren't accredited.
Thanks Tammy and Zoe. I am frustrated now, because I just checked and Children's is the one center NOT covered by our insurance!!!! ARHGGGGGGG. Cardinal Glennon is, but I am a tad hesitent because i know a family that went there and they wouldn't pursue genetic testing past the 100 panel and the head doc there acted like that is not really an option and said "that testing is only done in research centers". I am not saying they won't be good with my daughter, but want to know that where we go will be willing to do every possible test and proceadure. I am wondering what the center in Columbia is like, because they are attached to Missouri University, so I would think they are research focused. And yes, we are in the Springfield area, but don't want to use the local hospital for testing because they aren't accredited.
Thanks Tammy and Zoe. I am frustrated now, because I just checked and Children's is the one center NOT covered by our insurance!!!! ARHGGGGGGG. Cardinal Glennon is, but I am a tad hesitent because i know a family that went there and they wouldn't pursue genetic testing past the 100 panel and the head doc there acted like that is not really an option and said "that testing is only done in research centers". I am not saying they won't be good with my daughter, but want to know that where we go will be willing to do every possible test and proceadure. I am wondering what the center in Columbia is like, because they are attached to Missouri University, so I would think they are research focused. And yes, we are in the Springfield area, but don't want to use the local hospital for testing because they aren't accredited.
T
tammykrumrey
Guest
Has your daughter had a sweat test done yet? And I do think that doing the more extensive panel for genetic testing is important. My husband carriers a mutation that does not pop up on the small panel of 24 or so. When my second daughter was born they ran the test prior to us leaving the hospital (at the request of our pediatrician) and two weeks later I was told that she was only a carrier. I felt in my heart that it was wrong and our CF clinic at SLCH told me to bring her down for a sweat test anyways. While getting the sweat test done, I asked to see my older daughters genetic test, and I found that my second daughter was not tested for one of the mutations and I knew then that my heart was correct. Of course the sweat test came back positive the following day and two weeks later it was confirmed with the more extensive panel. The mutation does show up in the most common 36 gene mutations in our case, just not the most common 24.
I am happy that our clinic didn't just stop with the first test done at birth. She could had went longer being undiagnosed, depending on when she would had started having problems. The sooner the better. Good luck with this. I am sure it is very frustrating for you.
I am happy that our clinic didn't just stop with the first test done at birth. She could had went longer being undiagnosed, depending on when she would had started having problems. The sooner the better. Good luck with this. I am sure it is very frustrating for you.
T
tammykrumrey
Guest
Has your daughter had a sweat test done yet? And I do think that doing the more extensive panel for genetic testing is important. My husband carriers a mutation that does not pop up on the small panel of 24 or so. When my second daughter was born they ran the test prior to us leaving the hospital (at the request of our pediatrician) and two weeks later I was told that she was only a carrier. I felt in my heart that it was wrong and our CF clinic at SLCH told me to bring her down for a sweat test anyways. While getting the sweat test done, I asked to see my older daughters genetic test, and I found that my second daughter was not tested for one of the mutations and I knew then that my heart was correct. Of course the sweat test came back positive the following day and two weeks later it was confirmed with the more extensive panel. The mutation does show up in the most common 36 gene mutations in our case, just not the most common 24.
I am happy that our clinic didn't just stop with the first test done at birth. She could had went longer being undiagnosed, depending on when she would had started having problems. The sooner the better. Good luck with this. I am sure it is very frustrating for you.
I am happy that our clinic didn't just stop with the first test done at birth. She could had went longer being undiagnosed, depending on when she would had started having problems. The sooner the better. Good luck with this. I am sure it is very frustrating for you.