When to refer to a ENT

G

grantsmom

Guest
For the last six months Grant has been having a lot of upper respiratory infections. His Cf doc usually puts him on augmentin for 3 weeks when this occurs. He is taking his last dose today but sadly is sick with another infection. In october Grant had to have a ct scan of the head which showed abnormal sinuses. Sorry but I cant remember exactly how it was worded.
His physician said this is completely normal for a cf patient. I really would like for him to see an ent but his clinic will not refer him. If anyone could share any experiences with this I would so appreciate it. I'm so frustrated and sad that he is sick again. Thanks
 
G

grantsmom

Guest
For the last six months Grant has been having a lot of upper respiratory infections. His Cf doc usually puts him on augmentin for 3 weeks when this occurs. He is taking his last dose today but sadly is sick with another infection. In october Grant had to have a ct scan of the head which showed abnormal sinuses. Sorry but I cant remember exactly how it was worded.
His physician said this is completely normal for a cf patient. I really would like for him to see an ent but his clinic will not refer him. If anyone could share any experiences with this I would so appreciate it. I'm so frustrated and sad that he is sick again. Thanks
 
G

grantsmom

Guest
For the last six months Grant has been having a lot of upper respiratory infections. His Cf doc usually puts him on augmentin for 3 weeks when this occurs. He is taking his last dose today but sadly is sick with another infection. In october Grant had to have a ct scan of the head which showed abnormal sinuses. Sorry but I cant remember exactly how it was worded.
<br />His physician said this is completely normal for a cf patient. I really would like for him to see an ent but his clinic will not refer him. If anyone could share any experiences with this I would so appreciate it. I'm so frustrated and sad that he is sick again. Thanks
 
L

LouLou

New member
Do you need a referrel for insurance reasons? Otherwise, I would just make an appt and go. Do they have a reason why they won't refer you to an ENT? Just say you'd like the ENT to review the results of the CT Scan. If they decline your request make them put it in writing.
 
L

LouLou

New member
Do you need a referrel for insurance reasons? Otherwise, I would just make an appt and go. Do they have a reason why they won't refer you to an ENT? Just say you'd like the ENT to review the results of the CT Scan. If they decline your request make them put it in writing.
 
L

LouLou

New member
Do you need a referrel for insurance reasons? Otherwise, I would just make an appt and go. Do they have a reason why they won't refer you to an ENT? Just say you'd like the ENT to review the results of the CT Scan. If they decline your request make them put it in writing.
 
G

grantsmom

Guest
LouLou, thank you so much for the response. I don't need a referral due to insurance purposes. When I spoke with his cf doc he said "they have bad sinuses". This didn't really sit well with me because I've always been told that all cf patients are different.For the record, I think Grants physician is great but I just want to make sure everything possible is being done for him. I assumed that the ent would want a referral from his physician. I will definately call asap to schedule. I'm just hoping maybe they can do something to give Grant some relief. It makes him so miserable. Its so sad when my two year old tells me he has a headache. Thanks again
 
G

grantsmom

Guest
LouLou, thank you so much for the response. I don't need a referral due to insurance purposes. When I spoke with his cf doc he said "they have bad sinuses". This didn't really sit well with me because I've always been told that all cf patients are different.For the record, I think Grants physician is great but I just want to make sure everything possible is being done for him. I assumed that the ent would want a referral from his physician. I will definately call asap to schedule. I'm just hoping maybe they can do something to give Grant some relief. It makes him so miserable. Its so sad when my two year old tells me he has a headache. Thanks again
 
G

grantsmom

Guest
LouLou, thank you so much for the response. I don't need a referral due to insurance purposes. When I spoke with his cf doc he said "they have bad sinuses". This didn't really sit well with me because I've always been told that all cf patients are different.For the record, I think Grants physician is great but I just want to make sure everything possible is being done for him. I assumed that the ent would want a referral from his physician. I will definately call asap to schedule. I'm just hoping maybe they can do something to give Grant some relief. It makes him so miserable. Its so sad when my two year old tells me he has a headache. Thanks again
 
P

PatrickM

New member
Missy,

If your gut tells you he should see an ENT don't let anyone tell you otherwise. CF'ers do tend to have a lot of sinus issues and that is why you should have a good ENT familiar with CF that you can consult with. When my son was only 2 months old he had his first sinus surgery. He had just been diagnosed with CF and I told the CF MD that his nose was always stuffy. He referred me to an ENT, and it ended up my son had a mucus seal which was blocking 80% of his nasal passages making it hard for him to breathe. I don't think any of us expected that. So go see an ENT just so you know what you are dealing with, what the CT scan means, and what your options are. The ENT may have some good ideas about how to treat whatever is causing the headaches and hopefully he/she will work closely with your CF doctor. Good luck. :) Oh and one more thing, I have read that all cf 'ers will have an abnormal CT scan of the sinuses. I don't know if it is true but I've heard that. Maybe that is why your doctor isn't too concerned, but I would still go see the ENT.

Tara
 
P

PatrickM

New member
Missy,

If your gut tells you he should see an ENT don't let anyone tell you otherwise. CF'ers do tend to have a lot of sinus issues and that is why you should have a good ENT familiar with CF that you can consult with. When my son was only 2 months old he had his first sinus surgery. He had just been diagnosed with CF and I told the CF MD that his nose was always stuffy. He referred me to an ENT, and it ended up my son had a mucus seal which was blocking 80% of his nasal passages making it hard for him to breathe. I don't think any of us expected that. So go see an ENT just so you know what you are dealing with, what the CT scan means, and what your options are. The ENT may have some good ideas about how to treat whatever is causing the headaches and hopefully he/she will work closely with your CF doctor. Good luck. :) Oh and one more thing, I have read that all cf 'ers will have an abnormal CT scan of the sinuses. I don't know if it is true but I've heard that. Maybe that is why your doctor isn't too concerned, but I would still go see the ENT.

Tara
 
P

PatrickM

New member
Missy,
<br />
<br />If your gut tells you he should see an ENT don't let anyone tell you otherwise. CF'ers do tend to have a lot of sinus issues and that is why you should have a good ENT familiar with CF that you can consult with. When my son was only 2 months old he had his first sinus surgery. He had just been diagnosed with CF and I told the CF MD that his nose was always stuffy. He referred me to an ENT, and it ended up my son had a mucus seal which was blocking 80% of his nasal passages making it hard for him to breathe. I don't think any of us expected that. So go see an ENT just so you know what you are dealing with, what the CT scan means, and what your options are. The ENT may have some good ideas about how to treat whatever is causing the headaches and hopefully he/she will work closely with your CF doctor. Good luck. :) Oh and one more thing, I have read that all cf 'ers will have an abnormal CT scan of the sinuses. I don't know if it is true but I've heard that. Maybe that is why your doctor isn't too concerned, but I would still go see the ENT.
<br />
<br />Tara
 
M

mneville

Guest
Go see an ENT and tell your CF doctor that it is NOT okay for a two year old to live with headaches and constant pain. That is ridiculous! My son with CF had his first sinus surgery at 16 months when he could no longer breathe out of his nose due to horrific infection. He is now 6 and is about to have his 9th sinus surgery. He also has a port for IVs because his sinus infections are so bad. He lives with constant headaches, pain and pressure. Most CF patients do have abnormal CT scans but not all show massive amounts of infection with horrible symptoms like my son. You need to go to an ENT ASAP and get a CT scan. Our CF doctor is very aggressive with Aidan's sinus infections because they can affect the lungs and are so debilitating at times. Good Luck!

Megan
 
M

mneville

Guest
Go see an ENT and tell your CF doctor that it is NOT okay for a two year old to live with headaches and constant pain. That is ridiculous! My son with CF had his first sinus surgery at 16 months when he could no longer breathe out of his nose due to horrific infection. He is now 6 and is about to have his 9th sinus surgery. He also has a port for IVs because his sinus infections are so bad. He lives with constant headaches, pain and pressure. Most CF patients do have abnormal CT scans but not all show massive amounts of infection with horrible symptoms like my son. You need to go to an ENT ASAP and get a CT scan. Our CF doctor is very aggressive with Aidan's sinus infections because they can affect the lungs and are so debilitating at times. Good Luck!

Megan
 
M

mneville

Guest
Go see an ENT and tell your CF doctor that it is NOT okay for a two year old to live with headaches and constant pain. That is ridiculous! My son with CF had his first sinus surgery at 16 months when he could no longer breathe out of his nose due to horrific infection. He is now 6 and is about to have his 9th sinus surgery. He also has a port for IVs because his sinus infections are so bad. He lives with constant headaches, pain and pressure. Most CF patients do have abnormal CT scans but not all show massive amounts of infection with horrible symptoms like my son. You need to go to an ENT ASAP and get a CT scan. Our CF doctor is very aggressive with Aidan's sinus infections because they can affect the lungs and are so debilitating at times. Good Luck!
<br />
<br />Megan
 
R

Ratatosk

Administrator
Staff member
A friend of mine had to push to get her then 4 year old wcf to be seen by an ENT. Her child didn't sleep very well because she couldn't breathe, nor did she eat very well because she couldn't breathe. After sinus surgery, she said they had a completely different child. Was able to pay attention better, wasn't sleep deprived and ate food like crazy. Her sinuses were pretty much totally blocked.

It makes me so angry when a CF doctor makes broad sweeping statements regarding CF patients. Our local one told us once when our then 3 month old was coughing like crazy that "they cough, it's what they do". Well, a couple weeks later, the doctor in the City informed us that DS had bronchitis.
 
R

Ratatosk

Administrator
Staff member
A friend of mine had to push to get her then 4 year old wcf to be seen by an ENT. Her child didn't sleep very well because she couldn't breathe, nor did she eat very well because she couldn't breathe. After sinus surgery, she said they had a completely different child. Was able to pay attention better, wasn't sleep deprived and ate food like crazy. Her sinuses were pretty much totally blocked.

It makes me so angry when a CF doctor makes broad sweeping statements regarding CF patients. Our local one told us once when our then 3 month old was coughing like crazy that "they cough, it's what they do". Well, a couple weeks later, the doctor in the City informed us that DS had bronchitis.
 
You must log in or register to reply here.
Top