I have a 14 yr old daughter with CF dx at birth. She has been hospitalized so mnay times in 2011 I lost track. Her FEV 1 has gone down in the low 20's. After about 2 -3 weeks in the hospital her numbers start to come up and she comes home. After about a month being home she goes back into the hospital. I have to constantly be on top of her to take her meds and do her treatments. There are times I find her with the neb just hanging out her mouth. I work full time so I cant always be at her side while she is doing her treatments. I feel like I have failed. I am constantly thinking maybe her med combo is wrong. Maybe she only does well with IV antibiotics. Drs seem to believe she is just non compliant. I'm worried sick literally to try and get her healthy. Today she goes in for a bronch and her FEV 1 is only now at 36 after almost 3 weeks in hospital again. And another new bacteria found "microbacterium" I feel lost and helpless.
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- Thread starter cbritton
- Start date
I have a 14 yr old daughter with CF dx at birth. She has been hospitalized so mnay times in 2011 I lost track. Her FEV 1 has gone down in the low 20's. After about 2 -3 weeks in the hospital her numbers start to come up and she comes home. After about a month being home she goes back into the hospital. I have to constantly be on top of her to take her meds and do her treatments. There are times I find her with the neb just hanging out her mouth. I work full time so I cant always be at her side while she is doing her treatments. I feel like I have failed. I am constantly thinking maybe her med combo is wrong. Maybe she only does well with IV antibiotics. Drs seem to believe she is just non compliant. I'm worried sick literally to try and get her healthy. Today she goes in for a bronch and her FEV 1 is only now at 36 after almost 3 weeks in hospital again. And another new bacteria found "microbacterium" I feel lost and helpless.
T
TonyaH
Guest
I am so sorry you and your daughter are having such a rough time. Reading this is breaking my heart, partly because my son is 14 as well so I know the age well.
We are very compliant in our house. Andrew might miss a treatment here or there if he gets home late from a game, etc., but I would comfortably say he is about 95% compliant. So, I don't have alot of advice for you in helping your daughter help herself, other than to offer that Andrew has enjoyed watching some videos online from people like Gunnar Esiason and Ronnie Sharp(run, sickboy, run), about growing up with CF and doing treatments. They are role models for him. (And good ones, too!) There are some great young women who share their CF stories openly who might be a good fit for your daughter, too!
But my main concern with your post is your daughter's FEV1. Honestly, I don't think fev1 in the 20s and 30s is solely the response of poor compliance. May I ask how long her lung function has been that low? What is he lung function typically? It sounds to me there is an underlying issue, and mycobacterium may be the culprit.
My son grows mycobacterium abcessus. He has seen drops in his fev1 of up to 20% and has been on ivs on and off for a year and a half to treat the bug. He has rebounded quite nicely, but we are aware that m. abcessus rarely just 'goes away' and that we will probably have a need to treat it again. I would ask the doctors as much as you can about the mycobacterium she is culturing, what kind it is, and what their plan is. I would request a CT scan, as m. abcessus infiltration is quite visible on scans and can give a better idea of just how much infiltration has taken place.
Perhaps if your daughter has been feeling progressively worse, nebs and therapy don't seem to be helping her and doing treatments seems like a waste of time. Maybe if they can treat this infection and she starts to feel a bit better her outlook would change.
Please feel free to message me any time. I will be thinking of you both.
We are very compliant in our house. Andrew might miss a treatment here or there if he gets home late from a game, etc., but I would comfortably say he is about 95% compliant. So, I don't have alot of advice for you in helping your daughter help herself, other than to offer that Andrew has enjoyed watching some videos online from people like Gunnar Esiason and Ronnie Sharp(run, sickboy, run), about growing up with CF and doing treatments. They are role models for him. (And good ones, too!) There are some great young women who share their CF stories openly who might be a good fit for your daughter, too!
But my main concern with your post is your daughter's FEV1. Honestly, I don't think fev1 in the 20s and 30s is solely the response of poor compliance. May I ask how long her lung function has been that low? What is he lung function typically? It sounds to me there is an underlying issue, and mycobacterium may be the culprit.
My son grows mycobacterium abcessus. He has seen drops in his fev1 of up to 20% and has been on ivs on and off for a year and a half to treat the bug. He has rebounded quite nicely, but we are aware that m. abcessus rarely just 'goes away' and that we will probably have a need to treat it again. I would ask the doctors as much as you can about the mycobacterium she is culturing, what kind it is, and what their plan is. I would request a CT scan, as m. abcessus infiltration is quite visible on scans and can give a better idea of just how much infiltration has taken place.
Perhaps if your daughter has been feeling progressively worse, nebs and therapy don't seem to be helping her and doing treatments seems like a waste of time. Maybe if they can treat this infection and she starts to feel a bit better her outlook would change.
Please feel free to message me any time. I will be thinking of you both.
T
TonyaH
Guest
I am so sorry you and your daughter are having such a rough time. Reading this is breaking my heart, partly because my son is 14 as well so I know the age well.
We are very compliant in our house. Andrew might miss a treatment here or there if he gets home late from a game, etc., but I would comfortably say he is about 95% compliant. So, I don't have alot of advice for you in helping your daughter help herself, other than to offer that Andrew has enjoyed watching some videos online from people like Gunnar Esiason and Ronnie Sharp(run, sickboy, run), about growing up with CF and doing treatments. They are role models for him. (And good ones, too!) There are some great young women who share their CF stories openly who might be a good fit for your daughter, too!
But my main concern with your post is your daughter's FEV1. Honestly, I don't think fev1 in the 20s and 30s is solely the response of poor compliance. May I ask how long her lung function has been that low? What is he lung function typically? It sounds to me there is an underlying issue, and mycobacterium may be the culprit.
My son grows mycobacterium abcessus. He has seen drops in his fev1 of up to 20% and has been on ivs on and off for a year and a half to treat the bug. He has rebounded quite nicely, but we are aware that m. abcessus rarely just 'goes away' and that we will probably have a need to treat it again. I would ask the doctors as much as you can about the mycobacterium she is culturing, what kind it is, and what their plan is. I would request a CT scan, as m. abcessus infiltration is quite visible on scans and can give a better idea of just how much infiltration has taken place.
Perhaps if your daughter has been feeling progressively worse, nebs and therapy don't seem to be helping her and doing treatments seems like a waste of time. Maybe if they can treat this infection and she starts to feel a bit better her outlook would change.
Please feel free to message me any time. I will be thinking of you both.
We are very compliant in our house. Andrew might miss a treatment here or there if he gets home late from a game, etc., but I would comfortably say he is about 95% compliant. So, I don't have alot of advice for you in helping your daughter help herself, other than to offer that Andrew has enjoyed watching some videos online from people like Gunnar Esiason and Ronnie Sharp(run, sickboy, run), about growing up with CF and doing treatments. They are role models for him. (And good ones, too!) There are some great young women who share their CF stories openly who might be a good fit for your daughter, too!
But my main concern with your post is your daughter's FEV1. Honestly, I don't think fev1 in the 20s and 30s is solely the response of poor compliance. May I ask how long her lung function has been that low? What is he lung function typically? It sounds to me there is an underlying issue, and mycobacterium may be the culprit.
My son grows mycobacterium abcessus. He has seen drops in his fev1 of up to 20% and has been on ivs on and off for a year and a half to treat the bug. He has rebounded quite nicely, but we are aware that m. abcessus rarely just 'goes away' and that we will probably have a need to treat it again. I would ask the doctors as much as you can about the mycobacterium she is culturing, what kind it is, and what their plan is. I would request a CT scan, as m. abcessus infiltration is quite visible on scans and can give a better idea of just how much infiltration has taken place.
Perhaps if your daughter has been feeling progressively worse, nebs and therapy don't seem to be helping her and doing treatments seems like a waste of time. Maybe if they can treat this infection and she starts to feel a bit better her outlook would change.
Please feel free to message me any time. I will be thinking of you both.
Her Fev 1 has been dropping for the last year. And today after her bronchoscopy I found out that the diagnosis of mycobacterium was from a culture that was taken in October, so her Doctor did say that this might be the cuprit. He is sending a culture that he took while doing her bronch to a lab in Denver, which supposedly tests and we will have a better idea of what antibiotic will work best. We have had a lung transplant eval and they are not too sure that transplant is right for her because of her compliancy issues. We have read stories together of other CF patients and their fight, which is why I am clueless on why she does not want to comply regularly. I stick to a strict schedule and I sometimes wonder if I am too strict, if that makes sense. It is a tough age. I do remember a time years ago that she was healthy and her fev 1 was in the 80's. I just hope the disease is not just taking over.
I will mention a CT scan to the doctor again, as its been a while since her last one.
Thank you for responding. My best to you and your family as well.
Christine
I will mention a CT scan to the doctor again, as its been a while since her last one.
Thank you for responding. My best to you and your family as well.
Christine
Her Fev 1 has been dropping for the last year. And today after her bronchoscopy I found out that the diagnosis of mycobacterium was from a culture that was taken in October, so her Doctor did say that this might be the cuprit. He is sending a culture that he took while doing her bronch to a lab in Denver, which supposedly tests and we will have a better idea of what antibiotic will work best. We have had a lung transplant eval and they are not too sure that transplant is right for her because of her compliancy issues. We have read stories together of other CF patients and their fight, which is why I am clueless on why she does not want to comply regularly. I stick to a strict schedule and I sometimes wonder if I am too strict, if that makes sense. It is a tough age. I do remember a time years ago that she was healthy and her fev 1 was in the 80's. I just hope the disease is not just taking over.
I will mention a CT scan to the doctor again, as its been a while since her last one.
Thank you for responding. My best to you and your family as well.
Christine
I will mention a CT scan to the doctor again, as its been a while since her last one.
Thank you for responding. My best to you and your family as well.
Christine