SCARED,need to know more about other kids FEV1#s

MaksNana · Jun 5, 2009

Makailyn had always been good on her PFT's until last July.She was useally at 110%,and then had a major drop down to 78%.The doctor put her on 2 antibiotics, (along with her other agressive regimen), and I returned the following month, and they went to high 80's after 2 treatments in the office,and the doctor said she is declineing !! She put her on more antibiotics,,and cont. her on antibiotics through Dec...
The doctor would just tell us it was a big drop in numbers so suddenly,and didn't know why.And said, there are no guaranties ever with CF.I couldn't say anything, because the last time I heard a doctor tell me there are no guaranties it was with my mother and she passed away 5 monts later....

We ended up at another CF Clinic and when they tested her they were still down especially the #'s that show lower lungs,,down in the 50%. They gave her 2extra xopenex treatments, and Advair,,and her lower lung function went from 50%up to like 98%,,,but her FEV1 only went up to 88%.

They also put her on more antibiotics,,and said she has the Asthma Componet..Which I knew she had, had asthma when she was younger until she started all the meds.This clinic said she needed to be on a medication that had a cortal(?) steroid in it,and didn't know why the other clinic didn't have her on it..
Makailyn has had alot of inflammation problems,for several months ,that she will choke just eating icecream..She has had 2 chest x-rays within a month apart and the 2nd one was worst than the first.It said she had overinflated lungs and air trapping,,along with the normal stuff on the xrays.

I don't think they are listening when I tell them how bad her choking is when she eats,,and she has lost 2 lbs...The mucous is so thick, you'll see her constantly licking her lips,,clearing her throat, and coughing more,but the cough sounds different than I've ever heard before,sounds like a seal,,then it will get more productive ,and back to the seal sound.We go back in July to FU again.

The other clinic would always give her a 10 day course of steroids at least 2times a year,and the last year we were there they wouldn't do it,, they just kept giving more antibiotics...
I don't know if this is part of what is suppose to happen with this disease,,,she's been sicker this pass year than ever...I think possibly with the change in the clinics ,,they are not as familiar with her yet...I think I need to be more aggresive at getting some snswers ,,,or I don't know if I'm just panicing ...I've just seen some very different changes in her health,, and I think the doc maybe missing something ...
Can anyone tell me what their lung functions are???

MaksNana · Jun 5, 2009

Makailyn had always been good on her PFT's until last July.She was useally at 110%,and then had a major drop down to 78%.The doctor put her on 2 antibiotics, (along with her other agressive regimen), and I returned the following month, and they went to high 80's after 2 treatments in the office,and the doctor said she is declineing !! She put her on more antibiotics,,and cont. her on antibiotics through Dec...
The doctor would just tell us it was a big drop in numbers so suddenly,and didn't know why.And said, there are no guaranties ever with CF.I couldn't say anything, because the last time I heard a doctor tell me there are no guaranties it was with my mother and she passed away 5 monts later....

We ended up at another CF Clinic and when they tested her they were still down especially the #'s that show lower lungs,,down in the 50%. They gave her 2extra xopenex treatments, and Advair,,and her lower lung function went from 50%up to like 98%,,,but her FEV1 only went up to 88%.

They also put her on more antibiotics,,and said she has the Asthma Componet..Which I knew she had, had asthma when she was younger until she started all the meds.This clinic said she needed to be on a medication that had a cortal(?) steroid in it,and didn't know why the other clinic didn't have her on it..
Makailyn has had alot of inflammation problems,for several months ,that she will choke just eating icecream..She has had 2 chest x-rays within a month apart and the 2nd one was worst than the first.It said she had overinflated lungs and air trapping,,along with the normal stuff on the xrays.

I don't think they are listening when I tell them how bad her choking is when she eats,,and she has lost 2 lbs...The mucous is so thick, you'll see her constantly licking her lips,,clearing her throat, and coughing more,but the cough sounds different than I've ever heard before,sounds like a seal,,then it will get more productive ,and back to the seal sound.We go back in July to FU again.

The other clinic would always give her a 10 day course of steroids at least 2times a year,and the last year we were there they wouldn't do it,, they just kept giving more antibiotics...
I don't know if this is part of what is suppose to happen with this disease,,,she's been sicker this pass year than ever...I think possibly with the change in the clinics ,,they are not as familiar with her yet...I think I need to be more aggresive at getting some snswers ,,,or I don't know if I'm just panicing ...I've just seen some very different changes in her health,, and I think the doc maybe missing something ...
Can anyone tell me what their lung functions are???

MaksNana · Jun 5, 2009

Makailyn had always been good on her PFT's until last July.She was useally at 110%,and then had a major drop down to 78%.The doctor put her on 2 antibiotics, (along with her other agressive regimen), and I returned the following month, and they went to high 80's after 2 treatments in the office,and the doctor said she is declineing !! She put her on more antibiotics,,and cont. her on antibiotics through Dec...
The doctor would just tell us it was a big drop in numbers so suddenly,and didn't know why.And said, there are no guaranties ever with CF.I couldn't say anything, because the last time I heard a doctor tell me there are no guaranties it was with my mother and she passed away 5 monts later....

We ended up at another CF Clinic and when they tested her they were still down especially the #'s that show lower lungs,,down in the 50%. They gave her 2extra xopenex treatments, and Advair,,and her lower lung function went from 50%up to like 98%,,,but her FEV1 only went up to 88%.

They also put her on more antibiotics,,and said she has the Asthma Componet..Which I knew she had, had asthma when she was younger until she started all the meds.This clinic said she needed to be on a medication that had a cortal(?) steroid in it,and didn't know why the other clinic didn't have her on it..
Makailyn has had alot of inflammation problems,for several months ,that she will choke just eating icecream..She has had 2 chest x-rays within a month apart and the 2nd one was worst than the first.It said she had overinflated lungs and air trapping,,along with the normal stuff on the xrays.

I don't think they are listening when I tell them how bad her choking is when she eats,,and she has lost 2 lbs...The mucous is so thick, you'll see her constantly licking her lips,,clearing her throat, and coughing more,but the cough sounds different than I've ever heard before,sounds like a seal,,then it will get more productive ,and back to the seal sound.We go back in July to FU again.

The other clinic would always give her a 10 day course of steroids at least 2times a year,and the last year we were there they wouldn't do it,, they just kept giving more antibiotics...
I don't know if this is part of what is suppose to happen with this disease,,,she's been sicker this pass year than ever...I think possibly with the change in the clinics ,,they are not as familiar with her yet...I think I need to be more aggresive at getting some snswers ,,,or I don't know if I'm just panicing ...I've just seen some very different changes in her health,, and I think the doc maybe missing something ...
Can anyone tell me what their lung functions are???

MaksNana · Jun 5, 2009

Makailyn had always been good on her PFT's until last July.She was useally at 110%,and then had a major drop down to 78%.The doctor put her on 2 antibiotics, (along with her other agressive regimen), and I returned the following month, and they went to high 80's after 2 treatments in the office,and the doctor said she is declineing !! She put her on more antibiotics,,and cont. her on antibiotics through Dec...
The doctor would just tell us it was a big drop in numbers so suddenly,and didn't know why.And said, there are no guaranties ever with CF.I couldn't say anything, because the last time I heard a doctor tell me there are no guaranties it was with my mother and she passed away 5 monts later....

We ended up at another CF Clinic and when they tested her they were still down especially the #'s that show lower lungs,,down in the 50%. They gave her 2extra xopenex treatments, and Advair,,and her lower lung function went from 50%up to like 98%,,,but her FEV1 only went up to 88%.

They also put her on more antibiotics,,and said she has the Asthma Componet..Which I knew she had, had asthma when she was younger until she started all the meds.This clinic said she needed to be on a medication that had a cortal(?) steroid in it,and didn't know why the other clinic didn't have her on it..
Makailyn has had alot of inflammation problems,for several months ,that she will choke just eating icecream..She has had 2 chest x-rays within a month apart and the 2nd one was worst than the first.It said she had overinflated lungs and air trapping,,along with the normal stuff on the xrays.

I don't think they are listening when I tell them how bad her choking is when she eats,,and she has lost 2 lbs...The mucous is so thick, you'll see her constantly licking her lips,,clearing her throat, and coughing more,but the cough sounds different than I've ever heard before,sounds like a seal,,then it will get more productive ,and back to the seal sound.We go back in July to FU again.

The other clinic would always give her a 10 day course of steroids at least 2times a year,and the last year we were there they wouldn't do it,, they just kept giving more antibiotics...
I don't know if this is part of what is suppose to happen with this disease,,,she's been sicker this pass year than ever...I think possibly with the change in the clinics ,,they are not as familiar with her yet...I think I need to be more aggresive at getting some snswers ,,,or I don't know if I'm just panicing ...I've just seen some very different changes in her health,, and I think the doc maybe missing something ...
Can anyone tell me what their lung functions are???

MaksNana · Jun 5, 2009

Makailyn had always been good on her PFT's until last July.She was useally at 110%,and then had a major drop down to 78%.The doctor put her on 2 antibiotics, (along with her other agressive regimen), and I returned the following month, and they went to high 80's after 2 treatments in the office,and the doctor said she is declineing !! She put her on more antibiotics,,and cont. her on antibiotics through Dec...
 The doctor would just tell us it was a big drop in numbers so suddenly,and didn't know why.And said, there are no guaranties ever with CF.I couldn't say anything, because the last time I heard a doctor tell me there are no guaranties it was with my mother and she passed away 5 monts later....
 
 We ended up at another CF Clinic and when they tested her they were still down especially the #'s that show lower lungs,,down in the 50%. They gave her 2extra xopenex treatments, and Advair,,and her lower lung function went from 50%up to like 98%,,,but her FEV1 only went up to 88%.
 
 They also put her on more antibiotics,,and said she has the Asthma Componet..Which I knew she had, had asthma when she was younger until she started all the meds.This clinic said she needed to be on a medication that had a cortal(?) steroid in it,and didn't know why the other clinic didn't have her on it..
 Makailyn has had alot of inflammation problems,for several months ,that she will choke just eating icecream..She has had 2 chest x-rays within a month apart and the 2nd one was worst than the first.It said she had overinflated lungs and air trapping,,along with the normal stuff on the xrays.
 
 I don't think they are listening when I tell them how bad her choking is when she eats,,and she has lost 2 lbs...The mucous is so thick, you'll see her constantly licking her lips,,clearing her throat, and coughing more,but the cough sounds different than I've ever heard before,sounds like a seal,,then it will get more productive ,and back to the seal sound.We go back in July to FU again.
 
 The other clinic would always give her a 10 day course of steroids at least 2times a year,and the last year we were there they wouldn't do it,, they just kept giving more antibiotics...
 I don't know if this is part of what is suppose to happen with this disease,,,she's been sicker this pass year than ever...I think possibly with the change in the clinics ,,they are not as familiar with her yet...I think I need to be more aggresive at getting some snswers ,,,or I don't know if I'm just panicing ...I've just seen some very different changes in her health,, and I think the doc maybe missing something ...
 Can anyone tell me what their lung functions are???

dasjsmum · Jun 5, 2009

Hi

Just wondering if your dr has tried azithromycin? My son had heaps of problems and continuously had infections for 18mths,just finish one lot of nebs and had to start another then I asked he be placed on Azithro because my oldest was on it...it has made a huge difference to him.

The reason it made a difference was because it treats inflammation.it might help and is worth a try <img src="i/expressions/face-icon-small-smile.gif" border="0">

I cant remember what his lung funcion was at the time, but it was all over the place because he had continuous infections, like I said, 18mths. That was a few years ago, now he is back on a few lots of nebbed anti's a year and his FEV1 is back up at 100% now <img src="i/expressions/face-icon-small-smile.gif" border="0">

dasjsmum · Jun 5, 2009

Hi

Just wondering if your dr has tried azithromycin? My son had heaps of problems and continuously had infections for 18mths,just finish one lot of nebs and had to start another then I asked he be placed on Azithro because my oldest was on it...it has made a huge difference to him.

The reason it made a difference was because it treats inflammation.it might help and is worth a try <img src="i/expressions/face-icon-small-smile.gif" border="0">

I cant remember what his lung funcion was at the time, but it was all over the place because he had continuous infections, like I said, 18mths. That was a few years ago, now he is back on a few lots of nebbed anti's a year and his FEV1 is back up at 100% now <img src="i/expressions/face-icon-small-smile.gif" border="0">

dasjsmum · Jun 5, 2009

Hi

Just wondering if your dr has tried azithromycin? My son had heaps of problems and continuously had infections for 18mths,just finish one lot of nebs and had to start another then I asked he be placed on Azithro because my oldest was on it...it has made a huge difference to him.

The reason it made a difference was because it treats inflammation.it might help and is worth a try <img src="i/expressions/face-icon-small-smile.gif" border="0">

I cant remember what his lung funcion was at the time, but it was all over the place because he had continuous infections, like I said, 18mths. That was a few years ago, now he is back on a few lots of nebbed anti's a year and his FEV1 is back up at 100% now <img src="i/expressions/face-icon-small-smile.gif" border="0">

dasjsmum · Jun 5, 2009

Hi

Just wondering if your dr has tried azithromycin? My son had heaps of problems and continuously had infections for 18mths,just finish one lot of nebs and had to start another then I asked he be placed on Azithro because my oldest was on it...it has made a huge difference to him.

The reason it made a difference was because it treats inflammation.it might help and is worth a try <img src="i/expressions/face-icon-small-smile.gif" border="0">

I cant remember what his lung funcion was at the time, but it was all over the place because he had continuous infections, like I said, 18mths. That was a few years ago, now he is back on a few lots of nebbed anti's a year and his FEV1 is back up at 100% now <img src="i/expressions/face-icon-small-smile.gif" border="0">

dasjsmum · Jun 5, 2009

Hi
 
 Just wondering if your dr has tried azithromycin? My son had heaps of problems and continuously had infections for 18mths,just finish one lot of nebs and had to start another then I asked he be placed on Azithro because my oldest was on it...it has made a huge difference to him.
 
 The reason it made a difference was because it treats inflammation.it might help and is worth a try <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
 I cant remember what his lung funcion was at the time, but it was all over the place because he had continuous infections, like I said, 18mths. That was a few years ago, now he is back on a few lots of nebbed anti's a year and his FEV1 is back up at 100% now <img src="i/expressions/face-icon-small-smile.gif" border="0">

JazzysMom · Jun 5, 2009

It definitely sounds like an inflammation issue. Does she take Nexium or anything for GERD?

The nighttime acid can do a number on our breathing even if we dont "feel" the symptoms. Another thought also is sugars.....even if she doesnt have CFRD certain foods that can raise your sugars like carbs etc might trigger inflammation.

Then, of course, there is all the usual allergies/astmtha things like pollen, dust etc.

Steroids work well for the short term, but often its a liftstyle change of some sort when you are in the "anti inflammation mode" for the long haul.

I hope you can figure it out, but I would definitely focus on the inflammation because all the antibiotics in the world wont help if things are so inflammed she cant get the junk up!!

HUGS

JazzysMom · Jun 5, 2009

It definitely sounds like an inflammation issue. Does she take Nexium or anything for GERD?

The nighttime acid can do a number on our breathing even if we dont "feel" the symptoms. Another thought also is sugars.....even if she doesnt have CFRD certain foods that can raise your sugars like carbs etc might trigger inflammation.

Then, of course, there is all the usual allergies/astmtha things like pollen, dust etc.

Steroids work well for the short term, but often its a liftstyle change of some sort when you are in the "anti inflammation mode" for the long haul.

I hope you can figure it out, but I would definitely focus on the inflammation because all the antibiotics in the world wont help if things are so inflammed she cant get the junk up!!

HUGS

JazzysMom · Jun 5, 2009

It definitely sounds like an inflammation issue. Does she take Nexium or anything for GERD?

The nighttime acid can do a number on our breathing even if we dont "feel" the symptoms. Another thought also is sugars.....even if she doesnt have CFRD certain foods that can raise your sugars like carbs etc might trigger inflammation.

Then, of course, there is all the usual allergies/astmtha things like pollen, dust etc.

Steroids work well for the short term, but often its a liftstyle change of some sort when you are in the "anti inflammation mode" for the long haul.

I hope you can figure it out, but I would definitely focus on the inflammation because all the antibiotics in the world wont help if things are so inflammed she cant get the junk up!!

HUGS

JazzysMom · Jun 5, 2009

It definitely sounds like an inflammation issue. Does she take Nexium or anything for GERD?

The nighttime acid can do a number on our breathing even if we dont "feel" the symptoms. Another thought also is sugars.....even if she doesnt have CFRD certain foods that can raise your sugars like carbs etc might trigger inflammation.

Then, of course, there is all the usual allergies/astmtha things like pollen, dust etc.

Steroids work well for the short term, but often its a liftstyle change of some sort when you are in the "anti inflammation mode" for the long haul.

I hope you can figure it out, but I would definitely focus on the inflammation because all the antibiotics in the world wont help if things are so inflammed she cant get the junk up!!

HUGS

JazzysMom · Jun 5, 2009

It definitely sounds like an inflammation issue. Does she take Nexium or anything for GERD?
 
 The nighttime acid can do a number on our breathing even if we dont "feel" the symptoms. Another thought also is sugars.....even if she doesnt have CFRD certain foods that can raise your sugars like carbs etc might trigger inflammation.
 
 Then, of course, there is all the usual allergies/astmtha things like pollen, dust etc.
 
 Steroids work well for the short term, but often its a liftstyle change of some sort when you are in the "anti inflammation mode" for the long haul.
 
 I hope you can figure it out, but I would definitely focus on the inflammation because all the antibiotics in the world wont help if things are so inflammed she cant get the junk up!!
 
 HUGS

JORDYSMOM · Jun 5, 2009

My son has an asthma component. That and his allergies cause him the most trouble. He takes Asmanex and zyrtec, and he uses Veramyst daily. He did take singulair for a while, but he's not using it now. If Makailyn has an asthma component, they should be treating it IMO. I think you need to be very agressive in getting them to do something.

Also, have the done a sputum culture? Is she growing some bacteria that needs to be treated? Have all the abx been oral? It may be time for IV abx. Something to mention to them anyway.

Also, you said she licks her lips a lot. Jordan did this constantly when he was little, because he was always breathing through his mouth, and it dried his lips. He was breathing through his mouth because he couldn't breathe through his nose. Have they checked for polyps? If she has sinus drainage, it could be draining into her lungs, and that can cause major problems. The acid reflux/GERD that Mel mentioned can also cause problems.

It's not okay to accept a decline in her numbers without a fight. I think you are right to be questioning their level of care, and you should keep searching until you get the answers you need. Please keep us posted.

Stacey

JORDYSMOM · Jun 5, 2009

My son has an asthma component. That and his allergies cause him the most trouble. He takes Asmanex and zyrtec, and he uses Veramyst daily. He did take singulair for a while, but he's not using it now. If Makailyn has an asthma component, they should be treating it IMO. I think you need to be very agressive in getting them to do something.

Also, have the done a sputum culture? Is she growing some bacteria that needs to be treated? Have all the abx been oral? It may be time for IV abx. Something to mention to them anyway.

Also, you said she licks her lips a lot. Jordan did this constantly when he was little, because he was always breathing through his mouth, and it dried his lips. He was breathing through his mouth because he couldn't breathe through his nose. Have they checked for polyps? If she has sinus drainage, it could be draining into her lungs, and that can cause major problems. The acid reflux/GERD that Mel mentioned can also cause problems.

It's not okay to accept a decline in her numbers without a fight. I think you are right to be questioning their level of care, and you should keep searching until you get the answers you need. Please keep us posted.

Stacey

JORDYSMOM · Jun 5, 2009

My son has an asthma component. That and his allergies cause him the most trouble. He takes Asmanex and zyrtec, and he uses Veramyst daily. He did take singulair for a while, but he's not using it now. If Makailyn has an asthma component, they should be treating it IMO. I think you need to be very agressive in getting them to do something.

Also, have the done a sputum culture? Is she growing some bacteria that needs to be treated? Have all the abx been oral? It may be time for IV abx. Something to mention to them anyway.

Also, you said she licks her lips a lot. Jordan did this constantly when he was little, because he was always breathing through his mouth, and it dried his lips. He was breathing through his mouth because he couldn't breathe through his nose. Have they checked for polyps? If she has sinus drainage, it could be draining into her lungs, and that can cause major problems. The acid reflux/GERD that Mel mentioned can also cause problems.

It's not okay to accept a decline in her numbers without a fight. I think you are right to be questioning their level of care, and you should keep searching until you get the answers you need. Please keep us posted.

Stacey

JORDYSMOM · Jun 5, 2009

My son has an asthma component. That and his allergies cause him the most trouble. He takes Asmanex and zyrtec, and he uses Veramyst daily. He did take singulair for a while, but he's not using it now. If Makailyn has an asthma component, they should be treating it IMO. I think you need to be very agressive in getting them to do something.

Also, have the done a sputum culture? Is she growing some bacteria that needs to be treated? Have all the abx been oral? It may be time for IV abx. Something to mention to them anyway.

Also, you said she licks her lips a lot. Jordan did this constantly when he was little, because he was always breathing through his mouth, and it dried his lips. He was breathing through his mouth because he couldn't breathe through his nose. Have they checked for polyps? If she has sinus drainage, it could be draining into her lungs, and that can cause major problems. The acid reflux/GERD that Mel mentioned can also cause problems.

It's not okay to accept a decline in her numbers without a fight. I think you are right to be questioning their level of care, and you should keep searching until you get the answers you need. Please keep us posted.

Stacey

JORDYSMOM · Jun 5, 2009

My son has an asthma component. That and his allergies cause him the most trouble. He takes Asmanex and zyrtec, and he uses Veramyst daily. He did take singulair for a while, but he's not using it now. If Makailyn has an asthma component, they should be treating it IMO. I think you need to be very agressive in getting them to do something.
 
 Also, have the done a sputum culture? Is she growing some bacteria that needs to be treated? Have all the abx been oral? It may be time for IV abx. Something to mention to them anyway.
 
 Also, you said she licks her lips a lot. Jordan did this constantly when he was little, because he was always breathing through his mouth, and it dried his lips. He was breathing through his mouth because he couldn't breathe through his nose. Have they checked for polyps? If she has sinus drainage, it could be draining into her lungs, and that can cause major problems. The acid reflux/GERD that Mel mentioned can also cause problems.
 
 It's not okay to accept a decline in her numbers without a fight. I think you are right to be questioning their level of care, and you should keep searching until you get the answers you need. Please keep us posted.
 
 Stacey

SCARED,need to know more about other kids FEV1#s

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