Missouri Center

[tammykrumrey]

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.

 

[Dustin82]

I go to the Unverity Hosipal of Columbia They have a very good CF Team I think anytime I need something or am having problems with Insurance stuff they help me as much as they can. I have never been to the doc office around Springfield but when I am in the for doc appointments I hear people talking that it is a good place to go to. Well hope u get it all worked out Good Luck!!!!!

 

[Dustin82]

I go to the Unverity Hosipal of Columbia They have a very good CF Team I think anytime I need something or am having problems with Insurance stuff they help me as much as they can. I have never been to the doc office around Springfield but when I am in the for doc appointments I hear people talking that it is a good place to go to. Well hope u get it all worked out Good Luck!!!!!

 

[Dustin82]

I go to the Unverity Hosipal of Columbia They have a very good CF Team I think anytime I need something or am having problems with Insurance stuff they help me as much as they can. I have never been to the doc office around Springfield but when I am in the for doc appointments I hear people talking that it is a good place to go to. Well hope u get it all worked out Good Luck!!!!!

 

[point]

The CFF website just released rating comparisons for different accredited CF centers. This will at least give you a starting point though personal experience from other patients is almost always more helpful than statistics. Good luck!

 

[point]

The CFF website just released rating comparisons for different accredited CF centers. This will at least give you a starting point though personal experience from other patients is almost always more helpful than statistics. Good luck!

 

[point]

The CFF website just released rating comparisons for different accredited CF centers. This will at least give you a starting point though personal experience from other patients is almost always more helpful than statistics. Good luck!

 

[tammykrumrey]

Yes, the report can help out too<img src="i/expressions/face-icon-small-smile.gif" border="0"> St Louis Childrens does so many transplants that the numbers are brought down by the very sick children who are referred to them from other parts of the country-which gives a somewhat lower number, but still in the high 80s. But on the other hand, with that being said, I am happy to be at a clinic that is connected to a hospital that is recommended by others who are very sick.

 

[tammykrumrey]

Yes, the report can help out too<img src="i/expressions/face-icon-small-smile.gif" border="0"> St Louis Childrens does so many transplants that the numbers are brought down by the very sick children who are referred to them from other parts of the country-which gives a somewhat lower number, but still in the high 80s. But on the other hand, with that being said, I am happy to be at a clinic that is connected to a hospital that is recommended by others who are very sick.

 

[tammykrumrey]

Yes, the report can help out too<img src="i/expressions/face-icon-small-smile.gif" border="0"> St Louis Childrens does so many transplants that the numbers are brought down by the very sick children who are referred to them from other parts of the country-which gives a somewhat lower number, but still in the high 80s. But on the other hand, with that being said, I am happy to be at a clinic that is connected to a hospital that is recommended by others who are very sick.

 

[2girls]

Hi - we are newly diagnosed through amnio and live in IL, but I actually work at St. John's Mercy so we were considering receiving our CF care at St. John's since I know we have great pediatric specialists. We have an appointment with a ped pulmonologist at St. John's in a few weeks and also an appointment with Dr. Ferkol at Children's Hospital.

I know our insurance will be cheaper if I stay within the St. John's system, but want the absolute best care for our little guy.

I have heard that people that come from St. John's and then go to Children's because they think they will receive better care, usually return to St. John's due to the smaller environment and they are always seen by a doctor and not a resident and are not treated as a research project. Again - I have no idea what to expect - I am super anxious to meet with St. John's docs as well as Children's. I feel pretty knowledgeable about CF, but I know there is a lot more to learn.

Can anyone tell me what the advantages are to going to a CF Clinic vs. specialists at other hospitals that also treat CF kids?

 

[2girls]

Hi - we are newly diagnosed through amnio and live in IL, but I actually work at St. John's Mercy so we were considering receiving our CF care at St. John's since I know we have great pediatric specialists. We have an appointment with a ped pulmonologist at St. John's in a few weeks and also an appointment with Dr. Ferkol at Children's Hospital.

I know our insurance will be cheaper if I stay within the St. John's system, but want the absolute best care for our little guy.

I have heard that people that come from St. John's and then go to Children's because they think they will receive better care, usually return to St. John's due to the smaller environment and they are always seen by a doctor and not a resident and are not treated as a research project. Again - I have no idea what to expect - I am super anxious to meet with St. John's docs as well as Children's. I feel pretty knowledgeable about CF, but I know there is a lot more to learn.

Can anyone tell me what the advantages are to going to a CF Clinic vs. specialists at other hospitals that also treat CF kids?

 

[2girls]

Hi - we are newly diagnosed through amnio and live in IL, but I actually work at St. John's Mercy so we were considering receiving our CF care at St. John's since I know we have great pediatric specialists. We have an appointment with a ped pulmonologist at St. John's in a few weeks and also an appointment with Dr. Ferkol at Children's Hospital.

I know our insurance will be cheaper if I stay within the St. John's system, but want the absolute best care for our little guy.

I have heard that people that come from St. John's and then go to Children's because they think they will receive better care, usually return to St. John's due to the smaller environment and they are always seen by a doctor and not a resident and are not treated as a research project. Again - I have no idea what to expect - I am super anxious to meet with St. John's docs as well as Children's. I feel pretty knowledgeable about CF, but I know there is a lot more to learn.

Can anyone tell me what the advantages are to going to a CF Clinic vs. specialists at other hospitals that also treat CF kids?

 

[2girls]

Hi - we are newly diagnosed through amnio and live in IL, but I actually work at St. John's Mercy so we were considering receiving our CF care at St. John's since I know we have great pediatric specialists. We have an appointment with a ped pulmonologist at St. John's in a few weeks and also an appointment with Dr. Ferkol at Children's Hospital.

I know our insurance will be cheaper if I stay within the St. John's system, but want the absolute best care for our little guy.

I have heard that people that come from St. John's and then go to Children's because they think they will receive better care, usually return to St. John's due to the smaller environment and they are always seen by a doctor and not a resident and are not treated as a research project. Again - I have no idea what to expect - I am super anxious to meet with St. John's docs as well as Children's. I feel pretty knowledgeable about CF, but I know there is a lot more to learn.

Can anyone tell me what the advantages are to going to a CF Clinic vs. specialists at other hospitals that also treat CF kids?

 

[2girls]

Hi - we are newly diagnosed through amnio and live in IL, but I actually work at St. John's Mercy so we were considering receiving our CF care at St. John's since I know we have great pediatric specialists. We have an appointment with a ped pulmonologist at St. John's in a few weeks and also an appointment with Dr. Ferkol at Children's Hospital.
<br />
<br />I know our insurance will be cheaper if I stay within the St. John's system, but want the absolute best care for our little guy.
<br />
<br />I have heard that people that come from St. John's and then go to Children's because they think they will receive better care, usually return to St. John's due to the smaller environment and they are always seen by a doctor and not a resident and are not treated as a research project. Again - I have no idea what to expect - I am super anxious to meet with St. John's docs as well as Children's. I feel pretty knowledgeable about CF, but I know there is a lot more to learn.
<br />
<br />Can anyone tell me what the advantages are to going to a CF Clinic vs. specialists at other hospitals that also treat CF kids?

 

[tammykrumrey]

Deidre,

I cannot really give you information regarding a specialist over a CF clinic b/c we have only gone to a clinic. BUT, I can tell you how I feel about Dr. Ferkol at St. Louis Childrens (although you have probably already read that I like him in the posts above.) This original post is over two years old, and I am still as happy with him and STLCH as I was back in 2006.

Something that I like about Dr. Ferkol is that not only does he specialize in CF, but he is hands on in the research lab. I know that he is completely up to date on everything that is going on with CF, specifically. He shares information about new treatments as soon as he returns from annual conferences and tells us exactly how our children will benefit.

Dr. Ferkol knows that I research a lot on my own, so when we have something knew pop up, I am always there with questions. He is always very respectful of any concerns that we may have, and is always willing to meet outside of clinic when need be. My daughter,Kayla, started culturing Cepacia in September and he offered to meet with my husband and I the very next day to address concerns. We spoke for hours, and I never once felt rushed out.

My nephew, who also has CF, is a patient of Dr. Ferkol's as well. He is almost 18 and needs to start transitioning to an adult clinic, and he does not want to leave Dr. Ferkol. I think that they will eventually have to force him to leave<img src="i/expressions/face-icon-small-smile.gif" border="0">

You can pm if you have any other specific questions. My girls have been under his care from the day that Dr. Ferkol came to STLCH almost 8 years ago.

Best of luck to you and your new baby boy<img src="i/expressions/heart.gif" border="0">

 

[tammykrumrey]

Deidre,

I cannot really give you information regarding a specialist over a CF clinic b/c we have only gone to a clinic. BUT, I can tell you how I feel about Dr. Ferkol at St. Louis Childrens (although you have probably already read that I like him in the posts above.) This original post is over two years old, and I am still as happy with him and STLCH as I was back in 2006.

Something that I like about Dr. Ferkol is that not only does he specialize in CF, but he is hands on in the research lab. I know that he is completely up to date on everything that is going on with CF, specifically. He shares information about new treatments as soon as he returns from annual conferences and tells us exactly how our children will benefit.

Dr. Ferkol knows that I research a lot on my own, so when we have something knew pop up, I am always there with questions. He is always very respectful of any concerns that we may have, and is always willing to meet outside of clinic when need be. My daughter,Kayla, started culturing Cepacia in September and he offered to meet with my husband and I the very next day to address concerns. We spoke for hours, and I never once felt rushed out.

My nephew, who also has CF, is a patient of Dr. Ferkol's as well. He is almost 18 and needs to start transitioning to an adult clinic, and he does not want to leave Dr. Ferkol. I think that they will eventually have to force him to leave<img src="i/expressions/face-icon-small-smile.gif" border="0">

You can pm if you have any other specific questions. My girls have been under his care from the day that Dr. Ferkol came to STLCH almost 8 years ago.

Best of luck to you and your new baby boy<img src="i/expressions/heart.gif" border="0">

 

[tammykrumrey]

Deidre,

I cannot really give you information regarding a specialist over a CF clinic b/c we have only gone to a clinic. BUT, I can tell you how I feel about Dr. Ferkol at St. Louis Childrens (although you have probably already read that I like him in the posts above.) This original post is over two years old, and I am still as happy with him and STLCH as I was back in 2006.

Something that I like about Dr. Ferkol is that not only does he specialize in CF, but he is hands on in the research lab. I know that he is completely up to date on everything that is going on with CF, specifically. He shares information about new treatments as soon as he returns from annual conferences and tells us exactly how our children will benefit.

Dr. Ferkol knows that I research a lot on my own, so when we have something knew pop up, I am always there with questions. He is always very respectful of any concerns that we may have, and is always willing to meet outside of clinic when need be. My daughter,Kayla, started culturing Cepacia in September and he offered to meet with my husband and I the very next day to address concerns. We spoke for hours, and I never once felt rushed out.

My nephew, who also has CF, is a patient of Dr. Ferkol's as well. He is almost 18 and needs to start transitioning to an adult clinic, and he does not want to leave Dr. Ferkol. I think that they will eventually have to force him to leave<img src="i/expressions/face-icon-small-smile.gif" border="0">

You can pm if you have any other specific questions. My girls have been under his care from the day that Dr. Ferkol came to STLCH almost 8 years ago.

Best of luck to you and your new baby boy<img src="i/expressions/heart.gif" border="0">

 

[tammykrumrey]

Deidre,

I cannot really give you information regarding a specialist over a CF clinic b/c we have only gone to a clinic. BUT, I can tell you how I feel about Dr. Ferkol at St. Louis Childrens (although you have probably already read that I like him in the posts above.) This original post is over two years old, and I am still as happy with him and STLCH as I was back in 2006.

Something that I like about Dr. Ferkol is that not only does he specialize in CF, but he is hands on in the research lab. I know that he is completely up to date on everything that is going on with CF, specifically. He shares information about new treatments as soon as he returns from annual conferences and tells us exactly how our children will benefit.

Dr. Ferkol knows that I research a lot on my own, so when we have something knew pop up, I am always there with questions. He is always very respectful of any concerns that we may have, and is always willing to meet outside of clinic when need be. My daughter,Kayla, started culturing Cepacia in September and he offered to meet with my husband and I the very next day to address concerns. We spoke for hours, and I never once felt rushed out.

My nephew, who also has CF, is a patient of Dr. Ferkol's as well. He is almost 18 and needs to start transitioning to an adult clinic, and he does not want to leave Dr. Ferkol. I think that they will eventually have to force him to leave<img src="i/expressions/face-icon-small-smile.gif" border="0">

You can pm if you have any other specific questions. My girls have been under his care from the day that Dr. Ferkol came to STLCH almost 8 years ago.

Best of luck to you and your new baby boy<img src="i/expressions/heart.gif" border="0">

 

[tammykrumrey]

Deidre,
<br />
<br />I cannot really give you information regarding a specialist over a CF clinic b/c we have only gone to a clinic. BUT, I can tell you how I feel about Dr. Ferkol at St. Louis Childrens (although you have probably already read that I like him in the posts above.) This original post is over two years old, and I am still as happy with him and STLCH as I was back in 2006.
<br />
<br />Something that I like about Dr. Ferkol is that not only does he specialize in CF, but he is hands on in the research lab. I know that he is completely up to date on everything that is going on with CF, specifically. He shares information about new treatments as soon as he returns from annual conferences and tells us exactly how our children will benefit.
<br />
<br />Dr. Ferkol knows that I research a lot on my own, so when we have something knew pop up, I am always there with questions. He is always very respectful of any concerns that we may have, and is always willing to meet outside of clinic when need be. My daughter,Kayla, started culturing Cepacia in September and he offered to meet with my husband and I the very next day to address concerns. We spoke for hours, and I never once felt rushed out.
<br />
<br />My nephew, who also has CF, is a patient of Dr. Ferkol's as well. He is almost 18 and needs to start transitioning to an adult clinic, and he does not want to leave Dr. Ferkol. I think that they will eventually have to force him to leave<img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />You can pm if you have any other specific questions. My girls have been under his care from the day that Dr. Ferkol came to STLCH almost 8 years ago.
<br />
<br />Best of luck to you and your new baby boy<img src="i/expressions/heart.gif" border="0">
<br />
<br />