so confused after clinic appointment

[Lilliansmom]

So both kids were seen at clinic yesterday. They have an atypical dx, and one of my big questions for them were why was it atypical, when they seem like they have more issues than some other kids, and why are we doing nothing?

So, my DD did a lung function test. This was her third. Her numbers have gone down since the first one, but her doctor said it is because she is still learning how to do it. Her FEV was 75, and her FEF was 1.17, which he said was 64%. I asked about vests and chest PT, and he said he wanted to wait and see what her lung trend was. Am I wrong in thinking that she should be doing it now, to avoid damage? They plan to do a bronchoscopy soon when she is already under for GI to scope, and he said if she grew anything then we would talk about the vest as well. Right now she is only on creon and antibiotics. He said her lung function was fine, but it seems pretty low to me, although Iadmit I have no clue about it. Is it low?

They do not do lung function tests on my son since he is not 5 yet. He had pnuemonia yesterday, despite being on 28 days on antibiotics for a sinus infection that will not clear up. So he is on more antibiotics for another 14 days, and if he does not seem better we are suppose to go back. They did add flovent for him, as well as a saline nasal spray.

So, what I am most confused about is what to do now. They are seen at an accredited cf center - its at a hospital that kids from all over are sent to. Do I just wait for another 6 weeks when they go back to clinic and ask again? Is waiting 6 weeks going to be really bad for their health?

Thanks for any advice.

 

[Lilliansmom]

So both kids were seen at clinic yesterday. They have an atypical dx, and one of my big questions for them were why was it atypical, when they seem like they have more issues than some other kids, and why are we doing nothing?

So, my DD did a lung function test. This was her third. Her numbers have gone down since the first one, but her doctor said it is because she is still learning how to do it. Her FEV was 75, and her FEF was 1.17, which he said was 64%. I asked about vests and chest PT, and he said he wanted to wait and see what her lung trend was. Am I wrong in thinking that she should be doing it now, to avoid damage? They plan to do a bronchoscopy soon when she is already under for GI to scope, and he said if she grew anything then we would talk about the vest as well. Right now she is only on creon and antibiotics. He said her lung function was fine, but it seems pretty low to me, although Iadmit I have no clue about it. Is it low?

They do not do lung function tests on my son since he is not 5 yet. He had pnuemonia yesterday, despite being on 28 days on antibiotics for a sinus infection that will not clear up. So he is on more antibiotics for another 14 days, and if he does not seem better we are suppose to go back. They did add flovent for him, as well as a saline nasal spray.

So, what I am most confused about is what to do now. They are seen at an accredited cf center - its at a hospital that kids from all over are sent to. Do I just wait for another 6 weeks when they go back to clinic and ask again? Is waiting 6 weeks going to be really bad for their health?

Thanks for any advice.

 

[Lilliansmom]

So both kids were seen at clinic yesterday. They have an atypical dx, and one of my big questions for them were why was it atypical, when they seem like they have more issues than some other kids, and why are we doing nothing?
<br />
<br />So, my DD did a lung function test. This was her third. Her numbers have gone down since the first one, but her doctor said it is because she is still learning how to do it. Her FEV was 75, and her FEF was 1.17, which he said was 64%. I asked about vests and chest PT, and he said he wanted to wait and see what her lung trend was. Am I wrong in thinking that she should be doing it now, to avoid damage? They plan to do a bronchoscopy soon when she is already under for GI to scope, and he said if she grew anything then we would talk about the vest as well. Right now she is only on creon and antibiotics. He said her lung function was fine, but it seems pretty low to me, although Iadmit I have no clue about it. Is it low?
<br />
<br />They do not do lung function tests on my son since he is not 5 yet. He had pnuemonia yesterday, despite being on 28 days on antibiotics for a sinus infection that will not clear up. So he is on more antibiotics for another 14 days, and if he does not seem better we are suppose to go back. They did add flovent for him, as well as a saline nasal spray.
<br />
<br />So, what I am most confused about is what to do now. They are seen at an accredited cf center - its at a hospital that kids from all over are sent to. Do I just wait for another 6 weeks when they go back to clinic and ask again? Is waiting 6 weeks going to be really bad for their health?
<br />
<br />Thanks for any advice.

 

[janddburke]

you need to respect and trust your doctors. do you? are you comfortable?
there is nothing wrong with a second opinion, is there another CF center you can go to? or another doctor at your CF center?
sometimes within each center the doctors have differing strategies.
you need to be comfortable. you need to trust your doctor.
your kids need you.

may I ask what center you go to?

 

[janddburke]

you need to respect and trust your doctors. do you? are you comfortable?
there is nothing wrong with a second opinion, is there another CF center you can go to? or another doctor at your CF center?
sometimes within each center the doctors have differing strategies.
you need to be comfortable. you need to trust your doctor.
your kids need you.

may I ask what center you go to?

 

[janddburke]

you need to respect and trust your doctors. do you? are you comfortable?
<br />there is nothing wrong with a second opinion, is there another CF center you can go to? or another doctor at your CF center?
<br />sometimes within each center the doctors have differing strategies.
<br />you need to be comfortable. you need to trust your doctor.
<br />your kids need you.
<br />
<br />may I ask what center you go to?

 

[ymikhale]

I personally would be uncomfortable with a doctor that underestimates the importance of preventative care, and CPT is a major part of it. If my dd did not grow anything (you are really really lucky that yours still does not), I would insist on CPT to keep it that way, b/c bugs colonize lungs rather quickly (my dd was 2 months old when diagnosed and already colonized with Staph).

Is she on antibiotics for a respiratory infection? If so, she should be doing CPT even more frequently than when not sick.

FEV of 75 does seem kind of low, but if she is still learning it is possible that it does not reflect her "true" lung function.

Just my 2 cents

 

[ymikhale]

I personally would be uncomfortable with a doctor that underestimates the importance of preventative care, and CPT is a major part of it. If my dd did not grow anything (you are really really lucky that yours still does not), I would insist on CPT to keep it that way, b/c bugs colonize lungs rather quickly (my dd was 2 months old when diagnosed and already colonized with Staph).

Is she on antibiotics for a respiratory infection? If so, she should be doing CPT even more frequently than when not sick.

FEV of 75 does seem kind of low, but if she is still learning it is possible that it does not reflect her "true" lung function.

Just my 2 cents

 

[ymikhale]

I personally would be uncomfortable with a doctor that underestimates the importance of preventative care, and CPT is a major part of it. If my dd did not grow anything (you are really really lucky that yours still does not), I would insist on CPT to keep it that way, b/c bugs colonize lungs rather quickly (my dd was 2 months old when diagnosed and already colonized with Staph).
<br />
<br />Is she on antibiotics for a respiratory infection? If so, she should be doing CPT even more frequently than when not sick.
<br />
<br />FEV of 75 does seem kind of low, but if she is still learning it is possible that it does not reflect her "true" lung function.
<br />
<br />Just my 2 cents

 

[JennifersHope]

THat doesn't sound right to me, yes you are supposed to do treatments to prevent lung damage not just once you get it. I know for me I have an atypical dx and they currently have stopped doing my breathing treatments except for albuterol and xopenext and a few others. I use exercise as airway clearance.

I am going to see specialist at UNC to see if they can shed some light into it. I think that the doctors are starting to see that not all CF is created equal and therefore not all CF needs to be treated the same. I don't know if this is good or bad or what.

I totally trust my doctors though so we will see. If your children are sick. I would not wait six more weeks, that doesn't sound right. If I was sick I would not wait.

 

[JennifersHope]

THat doesn't sound right to me, yes you are supposed to do treatments to prevent lung damage not just once you get it. I know for me I have an atypical dx and they currently have stopped doing my breathing treatments except for albuterol and xopenext and a few others. I use exercise as airway clearance.

I am going to see specialist at UNC to see if they can shed some light into it. I think that the doctors are starting to see that not all CF is created equal and therefore not all CF needs to be treated the same. I don't know if this is good or bad or what.

I totally trust my doctors though so we will see. If your children are sick. I would not wait six more weeks, that doesn't sound right. If I was sick I would not wait.

 

[JennifersHope]

THat doesn't sound right to me, yes you are supposed to do treatments to prevent lung damage not just once you get it. I know for me I have an atypical dx and they currently have stopped doing my breathing treatments except for albuterol and xopenext and a few others. I use exercise as airway clearance.
<br />
<br />I am going to see specialist at UNC to see if they can shed some light into it. I think that the doctors are starting to see that not all CF is created equal and therefore not all CF needs to be treated the same. I don't know if this is good or bad or what.
<br />
<br />I totally trust my doctors though so we will see. If your children are sick. I would not wait six more weeks, that doesn't sound right. If I was sick I would not wait.

 

[Mommafirst]

Wow, I can see why you would be upset and concerned by this appointment. I was recently doing some research evaluation with some of the doctors on our team, I don't want to share all the confidential results, but I will tell you that the findings (which are in press to be published) show that there is a HUGE degree of inconsistency not only from center to center (all accredited) but also between doctors within the same centers.

So that being said, if you are not happy with your doctor's approach, you deserve the chance to either push the issue or change to another doctor or clinic.

My daughter is not 5 yet and we have had successful PFTs done. She had 104%, so I'd be VERY concerned that a child with a 75% was not considered to have lung issues and the doctor isn't looking to do something. The vest is EASY and not dangerous, to not add it to her routine seems malpractice worthy in my humble and non-professional opinion.

What did the doctor say when you asked about the atypical?? I really don't think there is a good answer. If your kids have genetic CF plus they have GI and Lung issues, then its CF and should be following the CFF recommended preventative therapies. Further, if their infections are not responding well to oral antibiotic, they can be causing permanent scarring issues and should be treated with IV antibiotics.

Agressive CF care extends lives. ALL the increases in median survival age are not because the disease has changed, its because we have learned how to manage it better. A doctor that doesn't make use of these therapies at early ages is missing the opportunity to extend your kids lives -- and that is a doctor I would fire promptly.

 

[Mommafirst]

Wow, I can see why you would be upset and concerned by this appointment. I was recently doing some research evaluation with some of the doctors on our team, I don't want to share all the confidential results, but I will tell you that the findings (which are in press to be published) show that there is a HUGE degree of inconsistency not only from center to center (all accredited) but also between doctors within the same centers.

So that being said, if you are not happy with your doctor's approach, you deserve the chance to either push the issue or change to another doctor or clinic.

My daughter is not 5 yet and we have had successful PFTs done. She had 104%, so I'd be VERY concerned that a child with a 75% was not considered to have lung issues and the doctor isn't looking to do something. The vest is EASY and not dangerous, to not add it to her routine seems malpractice worthy in my humble and non-professional opinion.

What did the doctor say when you asked about the atypical?? I really don't think there is a good answer. If your kids have genetic CF plus they have GI and Lung issues, then its CF and should be following the CFF recommended preventative therapies. Further, if their infections are not responding well to oral antibiotic, they can be causing permanent scarring issues and should be treated with IV antibiotics.

Agressive CF care extends lives. ALL the increases in median survival age are not because the disease has changed, its because we have learned how to manage it better. A doctor that doesn't make use of these therapies at early ages is missing the opportunity to extend your kids lives -- and that is a doctor I would fire promptly.

 

[Mommafirst]

Wow, I can see why you would be upset and concerned by this appointment. I was recently doing some research evaluation with some of the doctors on our team, I don't want to share all the confidential results, but I will tell you that the findings (which are in press to be published) show that there is a HUGE degree of inconsistency not only from center to center (all accredited) but also between doctors within the same centers.
<br />
<br />So that being said, if you are not happy with your doctor's approach, you deserve the chance to either push the issue or change to another doctor or clinic.
<br />
<br />My daughter is not 5 yet and we have had successful PFTs done. She had 104%, so I'd be VERY concerned that a child with a 75% was not considered to have lung issues and the doctor isn't looking to do something. The vest is EASY and not dangerous, to not add it to her routine seems malpractice worthy in my humble and non-professional opinion.
<br />
<br />What did the doctor say when you asked about the atypical?? I really don't think there is a good answer. If your kids have genetic CF plus they have GI and Lung issues, then its CF and should be following the CFF recommended preventative therapies. Further, if their infections are not responding well to oral antibiotic, they can be causing permanent scarring issues and should be treated with IV antibiotics.
<br />
<br />Agressive CF care extends lives. ALL the increases in median survival age are not because the disease has changed, its because we have learned how to manage it better. A doctor that doesn't make use of these therapies at early ages is missing the opportunity to extend your kids lives -- and that is a doctor I would fire promptly.

 

[Ratatosk]

IMO, you should go for a second opinion or at the very least indicate to your doctor that you'd like to be doing CPT/Vest/Nebs and arrange to have someone teach you. Especially being that your son has Pneumonia. Are you doing any airway clearance on him right now to get that mucus out? I remember when I had pneumonia years ago and I was miserable and afraid I was going to choke on that crud and I don't have CF!

Our local clinic sounds a lot like yours. They don't recommend airway clearance. Only if the person develops symptoms and usually only if they've got pneumonia. When DS was a baby they actually tried to talk us out of doing CPT "that we really didn't need to do it" or use nebs.

It's really amazing how something so simple, CPT, can keep the lungs clear.

 

[Ratatosk]

IMO, you should go for a second opinion or at the very least indicate to your doctor that you'd like to be doing CPT/Vest/Nebs and arrange to have someone teach you. Especially being that your son has Pneumonia. Are you doing any airway clearance on him right now to get that mucus out? I remember when I had pneumonia years ago and I was miserable and afraid I was going to choke on that crud and I don't have CF!

Our local clinic sounds a lot like yours. They don't recommend airway clearance. Only if the person develops symptoms and usually only if they've got pneumonia. When DS was a baby they actually tried to talk us out of doing CPT "that we really didn't need to do it" or use nebs.

It's really amazing how something so simple, CPT, can keep the lungs clear.

 

[Ratatosk]

IMO, you should go for a second opinion or at the very least indicate to your doctor that you'd like to be doing CPT/Vest/Nebs and arrange to have someone teach you. Especially being that your son has Pneumonia. Are you doing any airway clearance on him right now to get that mucus out? I remember when I had pneumonia years ago and I was miserable and afraid I was going to choke on that crud and I don't have CF!
<br />
<br />Our local clinic sounds a lot like yours. They don't recommend airway clearance. Only if the person develops symptoms and usually only if they've got pneumonia. When DS was a baby they actually tried to talk us out of doing CPT "that we really didn't need to do it" or use nebs.
<br />
<br />It's really amazing how something so simple, CPT, can keep the lungs clear.
<br />
<br />

 

[AleksandraKaczynska]

Hi, \for a long time I didn't trust our doctors and I would cheque Joanna's health wirh anonther doctor - from a diffrenet clinic - and also I did a few phone calls to other doctors who are part of cf organisations in our country (I'm from Poland).
It helped me to understand more and feel confortable.
I also learned to ask questions and doubt everything. If the doctor doesn't like it I just tell him that the health of my child is most important to me and I need to understand! - they never questioned this.
I heard also that children in UK don't have to do inhaltions every day - just when they are sick - but they all live near the sea in a warm climate. I never heard of not doing CPT in children.
I also confront what the doctors say with what parents say on forums like this.
If Jaoona got sick I would not wait also.

 

[AleksandraKaczynska]

Hi, \for a long time I didn't trust our doctors and I would cheque Joanna's health wirh anonther doctor - from a diffrenet clinic - and also I did a few phone calls to other doctors who are part of cf organisations in our country (I'm from Poland).
It helped me to understand more and feel confortable.
I also learned to ask questions and doubt everything. If the doctor doesn't like it I just tell him that the health of my child is most important to me and I need to understand! - they never questioned this.
I heard also that children in UK don't have to do inhaltions every day - just when they are sick - but they all live near the sea in a warm climate. I never heard of not doing CPT in children.
I also confront what the doctors say with what parents say on forums like this.
If Jaoona got sick I would not wait also.