Son may have CF

P

Poobah

New member
Dustin is my 17 yo step-son. He has suffered from breathing problems since he was a baby. He has been to all sorts of specialists and the only thing they have been able to agree upon is that he has a lung restriction.

The general consensus had been that he suffered from asthma that was aggravated by allergies. He took the Methacholine challenge test and they determined that he didn't have asthma. The Dr. that was treating him at the time decided that the coughing and sniffing were possibly tics associated with Tourette's Syndrome.

Just before school began in August Dustin started another bout of problems. Within a week or so he was diagnosed with Pneumonia and started treatment. For the last two months he has been having breathing issues. He has been on and off Prednisone, Albuterol and various other drugs.

A few weeks back his pediatrician suggested taking the sweat test. The first test was inconclusive. He was retested and scored a 50. A third test confirmed the 50.

He is scheduled to take the genetic test next week. Thanks to the good people on this forum, we will push to get the full test.

I have read that we should seek out an accredited CF center for treatment. We do have one nearby, but the person in charge of the center, is the same doctor that suggested that his coughing was caused by Tourette's or a habit.

We have excellent insurance coverage (three plans) and are able to travel. Are there any centers (other than the one in Louisville, Ky that we should consider. Before the sweat test we were looking at taking him to the Cleveland Clinc, or to Barnes-Jewish in St Louis.

Any advice would be appreciated.

Terry
 
P

Poobah

New member
Dustin is my 17 yo step-son. He has suffered from breathing problems since he was a baby. He has been to all sorts of specialists and the only thing they have been able to agree upon is that he has a lung restriction.

The general consensus had been that he suffered from asthma that was aggravated by allergies. He took the Methacholine challenge test and they determined that he didn't have asthma. The Dr. that was treating him at the time decided that the coughing and sniffing were possibly tics associated with Tourette's Syndrome.

Just before school began in August Dustin started another bout of problems. Within a week or so he was diagnosed with Pneumonia and started treatment. For the last two months he has been having breathing issues. He has been on and off Prednisone, Albuterol and various other drugs.

A few weeks back his pediatrician suggested taking the sweat test. The first test was inconclusive. He was retested and scored a 50. A third test confirmed the 50.

He is scheduled to take the genetic test next week. Thanks to the good people on this forum, we will push to get the full test.

I have read that we should seek out an accredited CF center for treatment. We do have one nearby, but the person in charge of the center, is the same doctor that suggested that his coughing was caused by Tourette's or a habit.

We have excellent insurance coverage (three plans) and are able to travel. Are there any centers (other than the one in Louisville, Ky that we should consider. Before the sweat test we were looking at taking him to the Cleveland Clinc, or to Barnes-Jewish in St Louis.

Any advice would be appreciated.

Terry
 
P

Poobah

New member
Dustin is my 17 yo step-son. He has suffered from breathing problems since he was a baby. He has been to all sorts of specialists and the only thing they have been able to agree upon is that he has a lung restriction.

The general consensus had been that he suffered from asthma that was aggravated by allergies. He took the Methacholine challenge test and they determined that he didn't have asthma. The Dr. that was treating him at the time decided that the coughing and sniffing were possibly tics associated with Tourette's Syndrome.

Just before school began in August Dustin started another bout of problems. Within a week or so he was diagnosed with Pneumonia and started treatment. For the last two months he has been having breathing issues. He has been on and off Prednisone, Albuterol and various other drugs.

A few weeks back his pediatrician suggested taking the sweat test. The first test was inconclusive. He was retested and scored a 50. A third test confirmed the 50.

He is scheduled to take the genetic test next week. Thanks to the good people on this forum, we will push to get the full test.

I have read that we should seek out an accredited CF center for treatment. We do have one nearby, but the person in charge of the center, is the same doctor that suggested that his coughing was caused by Tourette's or a habit.

We have excellent insurance coverage (three plans) and are able to travel. Are there any centers (other than the one in Louisville, Ky that we should consider. Before the sweat test we were looking at taking him to the Cleveland Clinc, or to Barnes-Jewish in St Louis.

Any advice would be appreciated.

Terry
 
P

Poobah

New member
Dustin is my 17 yo step-son. He has suffered from breathing problems since he was a baby. He has been to all sorts of specialists and the only thing they have been able to agree upon is that he has a lung restriction.

The general consensus had been that he suffered from asthma that was aggravated by allergies. He took the Methacholine challenge test and they determined that he didn't have asthma. The Dr. that was treating him at the time decided that the coughing and sniffing were possibly tics associated with Tourette's Syndrome.

Just before school began in August Dustin started another bout of problems. Within a week or so he was diagnosed with Pneumonia and started treatment. For the last two months he has been having breathing issues. He has been on and off Prednisone, Albuterol and various other drugs.

A few weeks back his pediatrician suggested taking the sweat test. The first test was inconclusive. He was retested and scored a 50. A third test confirmed the 50.

He is scheduled to take the genetic test next week. Thanks to the good people on this forum, we will push to get the full test.

I have read that we should seek out an accredited CF center for treatment. We do have one nearby, but the person in charge of the center, is the same doctor that suggested that his coughing was caused by Tourette's or a habit.

We have excellent insurance coverage (three plans) and are able to travel. Are there any centers (other than the one in Louisville, Ky that we should consider. Before the sweat test we were looking at taking him to the Cleveland Clinc, or to Barnes-Jewish in St Louis.

Any advice would be appreciated.

Terry
 
P

Poobah

New member
Dustin is my 17 yo step-son. He has suffered from breathing problems since he was a baby. He has been to all sorts of specialists and the only thing they have been able to agree upon is that he has a lung restriction.
<br />
<br />The general consensus had been that he suffered from asthma that was aggravated by allergies. He took the Methacholine challenge test and they determined that he didn't have asthma. The Dr. that was treating him at the time decided that the coughing and sniffing were possibly tics associated with Tourette's Syndrome.
<br />
<br />Just before school began in August Dustin started another bout of problems. Within a week or so he was diagnosed with Pneumonia and started treatment. For the last two months he has been having breathing issues. He has been on and off Prednisone, Albuterol and various other drugs.
<br />
<br />A few weeks back his pediatrician suggested taking the sweat test. The first test was inconclusive. He was retested and scored a 50. A third test confirmed the 50.
<br />
<br />He is scheduled to take the genetic test next week. Thanks to the good people on this forum, we will push to get the full test.
<br />
<br />I have read that we should seek out an accredited CF center for treatment. We do have one nearby, but the person in charge of the center, is the same doctor that suggested that his coughing was caused by Tourette's or a habit.
<br />
<br />We have excellent insurance coverage (three plans) and are able to travel. Are there any centers (other than the one in Louisville, Ky that we should consider. Before the sweat test we were looking at taking him to the Cleveland Clinc, or to Barnes-Jewish in St Louis.
<br />
<br />Any advice would be appreciated.
<br />
<br />Terry
 
B

Buckeye

New member
I loved the clinic in Cleveland - it's at Rainbow Babies and Childrens, not the Cleveland Clinic though.Something to think about though - if your step-son actually does have CF you might want to go to a clinic somewhat close to you, not necessarily in the same town or the closest to you, but you might not want to be traveling 10 hours or so to go to clinic on a regular basis. The reason being is that he may be in and out of the hospital for tune ups often and if he has an emergency situation it would be beneficial for him to be at a hospital where they know him and his history and he can see the same doctors that care for him on a regular basis. My son was diagnosed at the clinic that we felt was the best one in our state, but when it came time for the regular clinic visits we switched to the closer clinic for those reasons.
 
B

Buckeye

New member
I loved the clinic in Cleveland - it's at Rainbow Babies and Childrens, not the Cleveland Clinic though.Something to think about though - if your step-son actually does have CF you might want to go to a clinic somewhat close to you, not necessarily in the same town or the closest to you, but you might not want to be traveling 10 hours or so to go to clinic on a regular basis. The reason being is that he may be in and out of the hospital for tune ups often and if he has an emergency situation it would be beneficial for him to be at a hospital where they know him and his history and he can see the same doctors that care for him on a regular basis. My son was diagnosed at the clinic that we felt was the best one in our state, but when it came time for the regular clinic visits we switched to the closer clinic for those reasons.
 
B

Buckeye

New member
I loved the clinic in Cleveland - it's at Rainbow Babies and Childrens, not the Cleveland Clinic though.Something to think about though - if your step-son actually does have CF you might want to go to a clinic somewhat close to you, not necessarily in the same town or the closest to you, but you might not want to be traveling 10 hours or so to go to clinic on a regular basis. The reason being is that he may be in and out of the hospital for tune ups often and if he has an emergency situation it would be beneficial for him to be at a hospital where they know him and his history and he can see the same doctors that care for him on a regular basis. My son was diagnosed at the clinic that we felt was the best one in our state, but when it came time for the regular clinic visits we switched to the closer clinic for those reasons.
 
B

Buckeye

New member
I loved the clinic in Cleveland - it's at Rainbow Babies and Childrens, not the Cleveland Clinic though.Something to think about though - if your step-son actually does have CF you might want to go to a clinic somewhat close to you, not necessarily in the same town or the closest to you, but you might not want to be traveling 10 hours or so to go to clinic on a regular basis. The reason being is that he may be in and out of the hospital for tune ups often and if he has an emergency situation it would be beneficial for him to be at a hospital where they know him and his history and he can see the same doctors that care for him on a regular basis. My son was diagnosed at the clinic that we felt was the best one in our state, but when it came time for the regular clinic visits we switched to the closer clinic for those reasons.
 
B

Buckeye

New member
I loved the clinic in Cleveland - it's at Rainbow Babies and Childrens, not the Cleveland Clinic though.<p>Something to think about though - if your step-son actually does have CF you might want to go to a clinic somewhat close to you, not necessarily in the same town or the closest to you, but you might not want to be traveling 10 hours or so to go to clinic on a regular basis. The reason being is that he may be in and out of the hospital for tune ups often and if he has an emergency situation it would be beneficial for him to be at a hospital where they know him and his history and he can see the same doctors that care for him on a regular basis. My son was diagnosed at the clinic that we felt was the best one in our state, but when it came time for the regular clinic visits we switched to the closer clinic for those reasons.
 
J

JazzysMom

New member
It doesnt hurt to go farther away for at least the initial consult &/or diagnosis. You might decide its worth the extra travel.

Here is the link to find another Accredited CF Center near you:

<a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosis.com/cfcenters.cfm
">http://www.cysticfibrosis.com/cfcenters.cfm
</a>
I travel 3 hours one way to my center. Its in the heart of Manhattan. Its a pain in the butt to get too especially when I am admitted, but I wouldnt trade the relationships with all the people for something closer or easier to travel to. Some people want top notch care. I am willing to sacrifice a bit of that for emotional peace....NOT saying that I am because my doctors are great. Just saying in general if I had to choose!

OK I rambled enough.....

Let us know what happens!
 
J

JazzysMom

New member
It doesnt hurt to go farther away for at least the initial consult &/or diagnosis. You might decide its worth the extra travel.

Here is the link to find another Accredited CF Center near you:

<a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosis.com/cfcenters.cfm
">http://www.cysticfibrosis.com/cfcenters.cfm
</a>
I travel 3 hours one way to my center. Its in the heart of Manhattan. Its a pain in the butt to get too especially when I am admitted, but I wouldnt trade the relationships with all the people for something closer or easier to travel to. Some people want top notch care. I am willing to sacrifice a bit of that for emotional peace....NOT saying that I am because my doctors are great. Just saying in general if I had to choose!

OK I rambled enough.....

Let us know what happens!
 
J

JazzysMom

New member
It doesnt hurt to go farther away for at least the initial consult &/or diagnosis. You might decide its worth the extra travel.

Here is the link to find another Accredited CF Center near you:

<a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosis.com/cfcenters.cfm
">http://www.cysticfibrosis.com/cfcenters.cfm
</a>
I travel 3 hours one way to my center. Its in the heart of Manhattan. Its a pain in the butt to get too especially when I am admitted, but I wouldnt trade the relationships with all the people for something closer or easier to travel to. Some people want top notch care. I am willing to sacrifice a bit of that for emotional peace....NOT saying that I am because my doctors are great. Just saying in general if I had to choose!

OK I rambled enough.....

Let us know what happens!
 
J

JazzysMom

New member
It doesnt hurt to go farther away for at least the initial consult &/or diagnosis. You might decide its worth the extra travel.

Here is the link to find another Accredited CF Center near you:

<a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosis.com/cfcenters.cfm
">http://www.cysticfibrosis.com/cfcenters.cfm
</a>
I travel 3 hours one way to my center. Its in the heart of Manhattan. Its a pain in the butt to get too especially when I am admitted, but I wouldnt trade the relationships with all the people for something closer or easier to travel to. Some people want top notch care. I am willing to sacrifice a bit of that for emotional peace....NOT saying that I am because my doctors are great. Just saying in general if I had to choose!

OK I rambled enough.....

Let us know what happens!
 
J

JazzysMom

New member
It doesnt hurt to go farther away for at least the initial consult &/or diagnosis. You might decide its worth the extra travel.
<br />
<br />Here is the link to find another Accredited CF Center near you:
<br />
<br /><a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosis.com/cfcenters.cfm
">http://www.cysticfibrosis.com/cfcenters.cfm
</a><br />
<br />I travel 3 hours one way to my center. Its in the heart of Manhattan. Its a pain in the butt to get too especially when I am admitted, but I wouldnt trade the relationships with all the people for something closer or easier to travel to. Some people want top notch care. I am willing to sacrifice a bit of that for emotional peace....NOT saying that I am because my doctors are great. Just saying in general if I had to choose!
<br />
<br />OK I rambled enough.....
<br />
<br />Let us know what happens!
 
J

just1more

New member
Assuming you are in the western KY area from your post a quick check of the cff site came up with:

UofL
UK in Lexington
IU in Indy
Vanderbuilt in Nashville

I can't attest for any specific clinics, but they are all good hospitals and you can probably get more info from people on here.

I hope you get an answer soon.
 
J

just1more

New member
Assuming you are in the western KY area from your post a quick check of the cff site came up with:

UofL
UK in Lexington
IU in Indy
Vanderbuilt in Nashville

I can't attest for any specific clinics, but they are all good hospitals and you can probably get more info from people on here.

I hope you get an answer soon.
 
J

just1more

New member
Assuming you are in the western KY area from your post a quick check of the cff site came up with:

UofL
UK in Lexington
IU in Indy
Vanderbuilt in Nashville

I can't attest for any specific clinics, but they are all good hospitals and you can probably get more info from people on here.

I hope you get an answer soon.
 
J

just1more

New member
Assuming you are in the western KY area from your post a quick check of the cff site came up with:

UofL
UK in Lexington
IU in Indy
Vanderbuilt in Nashville

I can't attest for any specific clinics, but they are all good hospitals and you can probably get more info from people on here.

I hope you get an answer soon.
 
J

just1more

New member
Assuming you are in the western KY area from your post a quick check of the cff site came up with:
<br />
<br />UofL
<br />UK in Lexington
<br />IU in Indy
<br />Vanderbuilt in Nashville
<br />
<br />I can't attest for any specific clinics, but they are all good hospitals and you can probably get more info from people on here.
<br />
<br />I hope you get an answer soon.
 
You must log in or register to reply here.
Top