Any ideas as to what's wrong

[tammykrumrey]

My 15 year old nephew (with CF) is in hospital, admitted because he just wasn't feeling well. He went in on January 26th with his FEV being at 60%. He was started on three IV antibiotics (not sure which ones), doing two inhaled antibiotics, etc. After one week, he dropped to 43% FEV. What the heck is going on!!?? And he still isn't feeling great, and has pain in his lungs when he coughs. He will be doing PFT's again this Friday and then make a new game plan. This is just so frustrating for him and his parents (and the rest of us as well!)

He does culture basically everything possible, including B. Cepacia (which he has had now for about 7 years). In 2005 his baseline FEV was in the low 80s. Last year dropped into the 60s as a baseline (never could get them back up to the 80s).

Any ideas? Has anyone had this dramatic of a drop in FEV in one week, while on IVs? Thanks in advance for any insight.

Worried Aunt-

 

[tammykrumrey]

My 15 year old nephew (with CF) is in hospital, admitted because he just wasn't feeling well. He went in on January 26th with his FEV being at 60%. He was started on three IV antibiotics (not sure which ones), doing two inhaled antibiotics, etc. After one week, he dropped to 43% FEV. What the heck is going on!!?? And he still isn't feeling great, and has pain in his lungs when he coughs. He will be doing PFT's again this Friday and then make a new game plan. This is just so frustrating for him and his parents (and the rest of us as well!)

He does culture basically everything possible, including B. Cepacia (which he has had now for about 7 years). In 2005 his baseline FEV was in the low 80s. Last year dropped into the 60s as a baseline (never could get them back up to the 80s).

Any ideas? Has anyone had this dramatic of a drop in FEV in one week, while on IVs? Thanks in advance for any insight.

Worried Aunt-

 

[tammykrumrey]

My 15 year old nephew (with CF) is in hospital, admitted because he just wasn't feeling well. He went in on January 26th with his FEV being at 60%. He was started on three IV antibiotics (not sure which ones), doing two inhaled antibiotics, etc. After one week, he dropped to 43% FEV. What the heck is going on!!?? And he still isn't feeling great, and has pain in his lungs when he coughs. He will be doing PFT's again this Friday and then make a new game plan. This is just so frustrating for him and his parents (and the rest of us as well!)

He does culture basically everything possible, including B. Cepacia (which he has had now for about 7 years). In 2005 his baseline FEV was in the low 80s. Last year dropped into the 60s as a baseline (never could get them back up to the 80s).

Any ideas? Has anyone had this dramatic of a drop in FEV in one week, while on IVs? Thanks in advance for any insight.

Worried Aunt-

 

[mum2kj]

I'm so sorry your nephew is sick. I hope he can get his lung function back up again. it seems funny that his pft's could drop that much whilst on all of those meds.

My best wishes to Him <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[mum2kj]

I'm so sorry your nephew is sick. I hope he can get his lung function back up again. it seems funny that his pft's could drop that much whilst on all of those meds.

My best wishes to Him <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[mum2kj]

I'm so sorry your nephew is sick. I hope he can get his lung function back up again. it seems funny that his pft's could drop that much whilst on all of those meds.

My best wishes to Him <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[KrazyKat]

my instincts would be either a) allergies b) aspergillus (can cause a dramatic and quick drop in lung function or c) a mico bacteria of some sort.
Pain in lungs is not something i've ever experienced but would usually be linked to either pneumonia, pleurisy or possibly a clot or collapsed/partially collapsed lung.

sorry to hear he's not doing so good and will pray for his recovery.

 

[KrazyKat]

my instincts would be either a) allergies b) aspergillus (can cause a dramatic and quick drop in lung function or c) a mico bacteria of some sort.
Pain in lungs is not something i've ever experienced but would usually be linked to either pneumonia, pleurisy or possibly a clot or collapsed/partially collapsed lung.

sorry to hear he's not doing so good and will pray for his recovery.

 

[KrazyKat]

my instincts would be either a) allergies b) aspergillus (can cause a dramatic and quick drop in lung function or c) a mico bacteria of some sort.
Pain in lungs is not something i've ever experienced but would usually be linked to either pneumonia, pleurisy or possibly a clot or collapsed/partially collapsed lung.

sorry to hear he's not doing so good and will pray for his recovery.

 

[tammykrumrey]

He does have aspergillus, although being treated for it. He did suffer last year with a hole in his lung. He literally had a coughing fit, while in the hospital about this time last year, and 'popped' a hole in his lung. All of the sudden he was in major pain. My sister is a RN at the Childrens Hospital that he goes to, and was taking her break in his room and noticed he was having a tough time breathing and low in behold, she could hear little air movement on the one side.

Thanks for the input.

 

[tammykrumrey]

He does have aspergillus, although being treated for it. He did suffer last year with a hole in his lung. He literally had a coughing fit, while in the hospital about this time last year, and 'popped' a hole in his lung. All of the sudden he was in major pain. My sister is a RN at the Childrens Hospital that he goes to, and was taking her break in his room and noticed he was having a tough time breathing and low in behold, she could hear little air movement on the one side.

Thanks for the input.

 

[tammykrumrey]

He does have aspergillus, although being treated for it. He did suffer last year with a hole in his lung. He literally had a coughing fit, while in the hospital about this time last year, and 'popped' a hole in his lung. All of the sudden he was in major pain. My sister is a RN at the Childrens Hospital that he goes to, and was taking her break in his room and noticed he was having a tough time breathing and low in behold, she could hear little air movement on the one side.

Thanks for the input.

 

[thefrogprincess]

I'm not a doctor of course, but maybe he is having a reaction to one of the meds, he's on a lot. I know Tobi can cause a drop in lung function (it does in me but its slight). I hope things improve for him soon.

 

[thefrogprincess]

I'm not a doctor of course, but maybe he is having a reaction to one of the meds, he's on a lot. I know Tobi can cause a drop in lung function (it does in me but its slight). I hope things improve for him soon.

 

[thefrogprincess]

I'm not a doctor of course, but maybe he is having a reaction to one of the meds, he's on a lot. I know Tobi can cause a drop in lung function (it does in me but its slight). I hope things improve for him soon.

 

[ReneeP]

Tammy,

I'm sorry your nephew is having all this trouble. I know how scary and frustrating it can be. It's made even worse when you don't know what's wrong because you can't fix it.

My 12 year old daughter suddenly got really sick in December. It was almost overnight that her PFT's dropped dramatically with no noticable reason. Some of her numbers dropped more than 80%. They admitted her on IV's but she just wouldn't improve. She wasn't culturing anything at all, not even the staph she normally cultures. I was terrified. Even after 10 days in the hospital her pfts were way down (they went up a little but no where near what her normal is). They let her go home on oral antibiotics and extra treatments after 10 days, even though her PFTs were still way down. I took her back a week later and did PFT's again and they were WAY up. Not quite back to her normal, but at least back into the normal range. The only thing they could determine is that she had a virus. We really don't know exactly what happened. That was the first time she had been sick in 9 years and it hit her really hard.

I know your nephew is in a different situation because of the things he already cultures, but if it were a virus that was causing his problem, that may explain why the antibiotics aren't producing results. Just a thought. I wish (and all of you) the best. I hope he feels much better very soon.

 

[ReneeP]

Tammy,

I'm sorry your nephew is having all this trouble. I know how scary and frustrating it can be. It's made even worse when you don't know what's wrong because you can't fix it.

My 12 year old daughter suddenly got really sick in December. It was almost overnight that her PFT's dropped dramatically with no noticable reason. Some of her numbers dropped more than 80%. They admitted her on IV's but she just wouldn't improve. She wasn't culturing anything at all, not even the staph she normally cultures. I was terrified. Even after 10 days in the hospital her pfts were way down (they went up a little but no where near what her normal is). They let her go home on oral antibiotics and extra treatments after 10 days, even though her PFTs were still way down. I took her back a week later and did PFT's again and they were WAY up. Not quite back to her normal, but at least back into the normal range. The only thing they could determine is that she had a virus. We really don't know exactly what happened. That was the first time she had been sick in 9 years and it hit her really hard.

I know your nephew is in a different situation because of the things he already cultures, but if it were a virus that was causing his problem, that may explain why the antibiotics aren't producing results. Just a thought. I wish (and all of you) the best. I hope he feels much better very soon.

 

[ReneeP]

Tammy,

I'm sorry your nephew is having all this trouble. I know how scary and frustrating it can be. It's made even worse when you don't know what's wrong because you can't fix it.

My 12 year old daughter suddenly got really sick in December. It was almost overnight that her PFT's dropped dramatically with no noticable reason. Some of her numbers dropped more than 80%. They admitted her on IV's but she just wouldn't improve. She wasn't culturing anything at all, not even the staph she normally cultures. I was terrified. Even after 10 days in the hospital her pfts were way down (they went up a little but no where near what her normal is). They let her go home on oral antibiotics and extra treatments after 10 days, even though her PFTs were still way down. I took her back a week later and did PFT's again and they were WAY up. Not quite back to her normal, but at least back into the normal range. The only thing they could determine is that she had a virus. We really don't know exactly what happened. That was the first time she had been sick in 9 years and it hit her really hard.

I know your nephew is in a different situation because of the things he already cultures, but if it were a virus that was causing his problem, that may explain why the antibiotics aren't producing results. Just a thought. I wish (and all of you) the best. I hope he feels much better very soon.

 

[my65roses4me]

Everytime I get put into the hospital they do chest xrays. Does your nephews Dr do the same thing? Its sounds to me like he may have a partial collapsed lung which can be seen on an xray or a ct scan. Just a thought. Im not a Dr so dont take it to heart its just what I thought when I read you post.

 

[my65roses4me]

Everytime I get put into the hospital they do chest xrays. Does your nephews Dr do the same thing? Its sounds to me like he may have a partial collapsed lung which can be seen on an xray or a ct scan. Just a thought. Im not a Dr so dont take it to heart its just what I thought when I read you post.