CF clinic?

[ByGrace]

My son is 8 years old and was just diagnosed with a "mild case" (according to the Dr) of CF.  He has one Delta F508 and a 5T allele (I didn't get results for a TG).  They only tested for 32 mutations and did not do a sweat test so we're being sent to a geneticist for further testing and will hopefully have some more information soon.  His only symptom is severe constipation and it was on a long-shot that the doctor even tested him for CF.  We're also being sent to a pediatric gastroenterologist to help with the constipation.  My question is, do I need to ask to also be referred to a CF clinic?  Our nearest clinic is 4 hours away and I don't want to waste my time or the doctor's if it isn't necessary.   <br>

 

[ByGrace]

My son is 8 years old and was just diagnosed with a "mild case" (according to the Dr) of CF. He has one Delta F508 and a 5T allele (I didn't get results for a TG). They only tested for 32 mutations and did not do a sweat test so we're being sent to a geneticist for further testing and will hopefully have some more information soon. His only symptom is severe constipation and it was on a long-shot that the doctor even tested him for CF. We're also being sent to a pediatric gastroenterologist to help with the constipation. My question is, do I need to ask to also be referred to a CF clinic? Our nearest clinic is 4 hours away and I don't want to waste my time or the doctor's if it isn't necessary. <br>

 

[ByGrace]

My son is 8 years old and was just diagnosed with a "mild case" (according to the Dr) of CF. He has one Delta F508 and a 5T allele (I didn't get results for a TG). They only tested for 32 mutations and did not do a sweat test so we're being sent to a geneticist for further testing and will hopefully have some more information soon. His only symptom is severe constipation and it was on a long-shot that the doctor even tested him for CF. We're also being sent to a pediatric gastroenterologist to help with the constipation. My question is, do I need to ask to also be referred to a CF clinic? Our nearest clinic is 4 hours away and I don't want to waste my time or the doctor's if it isn't necessary. <br>

 

[Ratatosk]

IMO, I would get a referal to a CF clinic. Unfortunately, CF is a progressive disease and while the lungs may not be affected right now, at some point they will be. Four hours away may seem like a pain; however, I wouldn't want to risk permanent lung damage. Hopefully, the CF clinic would be able to recommend someone in your area who is familiar wcf, too.

 

[Ratatosk]

IMO, I would get a referal to a CF clinic. Unfortunately, CF is a progressive disease and while the lungs may not be affected right now, at some point they will be. Four hours away may seem like a pain; however, I wouldn't want to risk permanent lung damage. Hopefully, the CF clinic would be able to recommend someone in your area who is familiar wcf, too.

 

[Ratatosk]

IMO, I would get a referal to a CF clinic. Unfortunately, CF is a progressive disease and while the lungs may not be affected right now, at some point they will be. Four hours away may seem like a pain; however, I wouldn't want to risk permanent lung damage. Hopefully, the CF clinic would be able to recommend someone in your area who is familiar wcf, too.

 

[TonyaH]

<P>Absolutely, 100% YES!!  Find an accredited CF center.  Most general pediatricians would not think to run a CF test for constipation, so even the fact that CF is on your doctor's radar is a good thing.  But a specialist is necessary for proper CF care.  You will find that there is really no such thing as a 'mild' case of CF.  CF is progressive, so while your son may currently be mild in symptoms, things will progress and nobody, not even a doctor, can predict how quickly or severely progression will occur.  I know this sounds scary, and I don't mean to scare you, but it is important that you know this so you can set up the right care team for your son. You will feel better prepared once you do.</P>
<P> </P>

 

[TonyaH]

<P>Absolutely, 100% YES!! Find an accredited CF center. Most general pediatricians would not think to run a CF test for constipation, so even the fact that CF is on your doctor's radar is a good thing. But a specialist is necessary for proper CF care. You will find that there is really no such thing as a 'mild' case of CF. CF is progressive, so while your son may currently be mild in symptoms, things will progress and nobody, not even a doctor, can predict how quickly or severely progression will occur. I know this sounds scary, and I don't mean to scare you, but it is important that you know this so you can set up the right care team for your son.You will feel better prepared once you do.</P>
<P></P>

 

[TonyaH]

<P>Absolutely, 100% YES!! Find an accredited CF center. Most general pediatricians would not think to run a CF test for constipation, so even the fact that CF is on your doctor's radar is a good thing. But a specialist is necessary for proper CF care. You will find that there is really no such thing as a 'mild' case of CF. CF is progressive, so while your son may currently be mild in symptoms, things will progress and nobody, not even a doctor, can predict how quickly or severely progression will occur. I know this sounds scary, and I don't mean to scare you, but it is important that you know this so you can set up the right care team for your son.You will feel better prepared once you do.</P>
<P><BR></P>

 

[ByGrace]

Thank you for your advice! I will call and get a referral today.

 

[ByGrace]

Thank you for your advice! I will call and get a referral today.

 

[ByGrace]

Thank you for your advice! I will call and get a referral today.

 

[mccaff]

Couldn't have said it any better Ratatosk and TonyaH <img src="i/expressions/face-icon-small-smile.gif" border="0">

Accredited CF center is where you need to be, no matter what!
You need to set him, you and your family up for the future, like anyone who has a CF person in their life.
Never know whats going to happen and when, one day it's here and you never know if it will get better for a short time - My husband goes to Columbia in NYC and has been there for ever - Great place if you're in NY
Good luck with that little buddy of yours, just don't wait!

 

[mccaff]

Couldn't have said it any better Ratatosk and TonyaH <img src="i/expressions/face-icon-small-smile.gif" border="0">

Accredited CF center is where you need to be, no matter what!
You need to set him, you and your family up for the future, like anyone who has a CF person in their life.
Never know whats going to happen and when, one day it's here and you never know if it will get better for a short time - My husband goes to Columbia in NYC and has been there for ever - Great place if you're in NY
Good luck with that little buddy of yours, just don't wait!

 

[mccaff]

Couldn't have said it any better Ratatosk and TonyaH <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />Accredited CF center is where you need to be, no matter what!
<br />You need to set him, you and your family up for the future, like anyone who has a CF person in their life.
<br />Never know whats going to happen and when, one day it's here and you never know if it will get better for a short time - My husband goes to Columbia in NYC and has been there for ever - Great place if you're in NY
<br />Good luck with that little buddy of yours, just don't wait!
<br />

 

[Ratatosk]

Our CF clinic is about a 3 1/2 hour drive; however, we are so much more confident with the care we receive there than with the local CF clinic. They're only a phone call away if there are issues, we time clinic appoints so they're on a Friday and make a long weekend of it. Though we have driven down early in the morning and back that night.

 

[Ratatosk]

Our CF clinic is about a 3 1/2 hour drive; however, we are so much more confident with the care we receive there than with the local CF clinic. They're only a phone call away if there are issues, we time clinic appoints so they're on a Friday and make a long weekend of it. Though we have driven down early in the morning and back that night.

 

[Ratatosk]

Our CF clinic is about a 3 1/2 hour drive; however, we are so much more confident with the care we receive there than with the local CF clinic. They're only a phone call away if there are issues, we time clinic appoints so they're on a Friday and make a long weekend of it. Though we have driven down early in the morning and back that night.

 

[ByGrace]

Well, it was a battle trying to convince my son's pediatrician of his need to be seen at a CF clinic, but we finally got the approval. We will be going to Duke University Medical Center's CF clinic next month. Does anybody have any knowledge/opinion about this particular clinic?

 

[ByGrace]

Well, it was a battle trying to convince my son's pediatrician of his need to be seen at a CF clinic, but we finally got the approval. We will be going to Duke University Medical Center's CF clinic next month. Does anybody have any knowledge/opinion about this particular clinic?