Hi all, <br><br>I am a supporting girlfriend to a father of a 13 yr old CF child. She's a double D508 and recently diagnosed with CFRD this year. Prior to this year she had a baseline of 90! and was only needing a tune-up once a year. This has been a terrible year, she just got admitted for the 5th time. Typically when she get's admitted, you can tell she's sick. The past several times, there's been no real indication, except low PFTs in the ~66 range. Her cultures test for PA each time with no other new growths. After each visit, she hasn't been completely bouncing back like she had before. She'll get her PFT's back up to around 79 but not much higher and then two months later, we are back in the hospital.<br><br>The docs have no clue why there's such a sudden change. =( So now we are all looking around for any advice, maybe someone here has been through something similar and has some suggestions? I did read some posts about patients running into issues with Tobi after a while. Jessica is currently on a regimen of one month Tobi, one month cayston. I'm wondering if that's a possibility here.<br><br>Any help would be much appreciated!<br><br>Taylor<br>
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Can't seem to shake the PA.. 5th hosp visit this year.
- Thread starter Jemza
- Start date
Hi all, <br><br>I am a supporting girlfriend to a father of a 13 yr old CF child. She's a double D508 and recently diagnosed with CFRD this year. Prior to this year she had a baseline of 90! and was only needing a tune-up once a year. This has been a terrible year, she just got admitted for the 5th time. Typically when she get's admitted, you can tell she's sick. The past several times, there's been no real indication, except low PFTs in the ~66 range. Her cultures test for PA each time with no other new growths. After each visit, she hasn't been completely bouncing back like she had before. She'll get her PFT's back up to around 79 but not much higher and then two months later, we are back in the hospital.<br><br>The docs have no clue why there's such a sudden change. =( So now we are all looking around for any advice, maybe someone here has been through something similar and has some suggestions? I did read some posts about patients running into issues with Tobi after a while. Jessica is currently on a regimen of one month Tobi, one month cayston. I'm wondering if that's a possibility here.<br><br>Any help would be much appreciated!<br><br>Taylor<br>
Hi all, <br><br>I am a supporting girlfriend to a father of a 13 yr old CF child. She's a double D508 and recently diagnosed with CFRD this year. Prior to this year she had a baseline of 90! and was only needing a tune-up once a year. This has been a terrible year, she just got admitted for the 5th time. Typically when she get's admitted, you can tell she's sick. The past several times, there's been no real indication, except low PFTs in the ~66 range. Her cultures test for PA each time with no other new growths. After each visit, she hasn't been completely bouncing back like she had before. She'll get her PFT's back up to around 79 but not much higher and then two months later, we are back in the hospital.<br><br>The docs have no clue why there's such a sudden change. =( So now we are all looking around for any advice, maybe someone here has been through something similar and has some suggestions? I did read some posts about patients running into issues with Tobi after a while. Jessica is currently on a regimen of one month Tobi, one month cayston. I'm wondering if that's a possibility here.<br><br>Any help would be much appreciated!<br><br>Taylor<br>
Are her cultures still sensitive to Tobra and Aztreonam? If not, then maybe they are not working like they used to.
I am sure after so many exacerbations close together her body is pretty run down and weak. I know I have had this happen a couple times in my life where I did not get my strength back between exacerbations and it is really a downward spiral. I would really suggest when she starts feeling better to really start an exercise regiment. Start slow and then add more each time to build her muscles and cardio back up. Maybe even look into pulmonary rehab to get started. Secondly make sure she is eating healthy and is getting lots of nutrition. If she has CFRD make sure it is under control. If not, make sure she is tested that she does not have it. Exercise and Nutrition are really so important, antibiotics can only do so much and over time they do become less effective. Finally, if she is not already, make sure she is compliant with nebs and vest/chest PT.
I am sure after so many exacerbations close together her body is pretty run down and weak. I know I have had this happen a couple times in my life where I did not get my strength back between exacerbations and it is really a downward spiral. I would really suggest when she starts feeling better to really start an exercise regiment. Start slow and then add more each time to build her muscles and cardio back up. Maybe even look into pulmonary rehab to get started. Secondly make sure she is eating healthy and is getting lots of nutrition. If she has CFRD make sure it is under control. If not, make sure she is tested that she does not have it. Exercise and Nutrition are really so important, antibiotics can only do so much and over time they do become less effective. Finally, if she is not already, make sure she is compliant with nebs and vest/chest PT.
Are her cultures still sensitive to Tobra and Aztreonam? If not, then maybe they are not working like they used to.
I am sure after so many exacerbations close together her body is pretty run down and weak. I know I have had this happen a couple times in my life where I did not get my strength back between exacerbations and it is really a downward spiral. I would really suggest when she starts feeling better to really start an exercise regiment. Start slow and then add more each time to build her muscles and cardio back up. Maybe even look into pulmonary rehab to get started. Secondly make sure she is eating healthy and is getting lots of nutrition. If she has CFRD make sure it is under control. If not, make sure she is tested that she does not have it. Exercise and Nutrition are really so important, antibiotics can only do so much and over time they do become less effective. Finally, if she is not already, make sure she is compliant with nebs and vest/chest PT.
I am sure after so many exacerbations close together her body is pretty run down and weak. I know I have had this happen a couple times in my life where I did not get my strength back between exacerbations and it is really a downward spiral. I would really suggest when she starts feeling better to really start an exercise regiment. Start slow and then add more each time to build her muscles and cardio back up. Maybe even look into pulmonary rehab to get started. Secondly make sure she is eating healthy and is getting lots of nutrition. If she has CFRD make sure it is under control. If not, make sure she is tested that she does not have it. Exercise and Nutrition are really so important, antibiotics can only do so much and over time they do become less effective. Finally, if she is not already, make sure she is compliant with nebs and vest/chest PT.
Are her cultures still sensitive to Tobra and Aztreonam? If not, then maybe they are not working like they used to.
<br />
<br />I am sure after so many exacerbations close together her body is pretty run down and weak. I know I have had this happen a couple times in my life where I did not get my strength back between exacerbations and it is really a downward spiral. I would really suggest when she starts feeling better to really start an exercise regiment. Start slow and then add more each time to build her muscles and cardio back up. Maybe even look into pulmonary rehab to get started. Secondly make sure she is eating healthy and is getting lots of nutrition. If she has CFRD make sure it is under control. If not, make sure she is tested that she does not have it. Exercise and Nutrition are really so important, antibiotics can only do so much and over time they do become less effective. Finally, if she is not already, make sure she is compliant with nebs and vest/chest PT.
<br />
<br />I am sure after so many exacerbations close together her body is pretty run down and weak. I know I have had this happen a couple times in my life where I did not get my strength back between exacerbations and it is really a downward spiral. I would really suggest when she starts feeling better to really start an exercise regiment. Start slow and then add more each time to build her muscles and cardio back up. Maybe even look into pulmonary rehab to get started. Secondly make sure she is eating healthy and is getting lots of nutrition. If she has CFRD make sure it is under control. If not, make sure she is tested that she does not have it. Exercise and Nutrition are really so important, antibiotics can only do so much and over time they do become less effective. Finally, if she is not already, make sure she is compliant with nebs and vest/chest PT.
Thanks! We are definitely going to ask the docs about the culture sensitivities now!<br><br>She is a trooper and doesn't complain much about treatments and we stay on on her about them. She doesn't ever miss treatments, so that part is good. I would say there is a definite issue with exercise, she HATES it. We have tried lots of different activities to get her to be active but it doesn't work. She does love to swim and I've suggested possibly swim lessons but I know it can be risky and difficult to find a good pool that maintains the water properly. I think it's worth looking into because it's about the only active thing she appears to be interested in. Eating is also somewhat of an issue, she hates everything except grilled cheese, mac n cheese and popcorn. She does love pediasure still so I have bulk boxes shipped to the house so she can have several a day to make up for some of the nutrition. I've also recently gotten a new food processor and want to try hiding veggies inside of things like pizza sauce, etc.<br><br>I know the exercise would make a huge difference in her life and I do realize 66 pft is pretty high to many people but it's still so scary to see a drastic drop all of a sudden. =/ Thanks for the advice!<br>
Thanks! We are definitely going to ask the docs about the culture sensitivities now!<br><br>She is a trooper and doesn't complain much about treatments and we stay on on her about them. She doesn't ever miss treatments, so that part is good. I would say there is a definite issue with exercise, she HATES it. We have tried lots of different activities to get her to be active but it doesn't work. She does love to swim and I've suggested possibly swim lessons but I know it can be risky and difficult to find a good pool that maintains the water properly. I think it's worth looking into because it's about the only active thing she appears to be interested in. Eating is also somewhat of an issue, she hates everything except grilled cheese, mac n cheese and popcorn. She does love pediasure still so I have bulk boxes shipped to the house so she can have several a day to make up for some of the nutrition. I've also recently gotten a new food processor and want to try hiding veggies inside of things like pizza sauce, etc.<br><br>I know the exercise would make a huge difference in her life and I do realize 66 pft is pretty high to many people but it's still so scary to see a drastic drop all of a sudden. =/ Thanks for the advice!<br>
Thanks! We are definitely going to ask the docs about the culture sensitivities now!<br><br>She is a trooper and doesn't complain much about treatments and we stay on on her about them. She doesn't ever miss treatments, so that part is good. I would say there is a definite issue with exercise, she HATES it. We have tried lots of different activities to get her to be active but it doesn't work. She does love to swim and I've suggested possibly swim lessons but I know it can be risky and difficult to find a good pool that maintains the water properly. I think it's worth looking into because it's about the only active thing she appears to be interested in. Eating is also somewhat of an issue, she hates everything except grilled cheese, mac n cheese and popcorn. She does love pediasure still so I have bulk boxes shipped to the house so she can have several a day to make up for some of the nutrition. I've also recently gotten a new food processor and want to try hiding veggies inside of things like pizza sauce, etc.<br><br>I know the exercise would make a huge difference in her life and I do realize 66 pft is pretty high to many people but it's still so scary to see a drastic drop all of a sudden. =/ Thanks for the advice!<br>
Her nutritional needs need to be looked at. Most Cf's are not getting the right nutrition. I avoid gluten, sugar and processed foods. Try one month on a paleo diet and see if it helps.
<br>I also juice greens - brussel sprouts, broccoli, spinach etc
<br>I agressively get nutrients via g-tube - natural whole foods.
<br>look at my post here
<br>g-tube advantage in the nutrition posts
<br>
<br><a href="http://forums.cysticfibrosis.com/messageview.cfm?catid=903&threadid=611812&enterthread=y">http://forums.cysticfibrosis.com/messageview.cfm?catid=903&threadid=611812&enterthread=y</a><br>
<br>I also juice greens - brussel sprouts, broccoli, spinach etc
<br>I agressively get nutrients via g-tube - natural whole foods.
<br>look at my post here
<br>g-tube advantage in the nutrition posts
<br>
<br><a href="http://forums.cysticfibrosis.com/messageview.cfm?catid=903&threadid=611812&enterthread=y">http://forums.cysticfibrosis.com/messageview.cfm?catid=903&threadid=611812&enterthread=y</a><br>
Her nutritional needs need to be looked at. Most Cf's are not getting the right nutrition. I avoid gluten, sugar and processed foods. Try one month on a paleo diet and see if it helps.
<br>I also juice greens - brussel sprouts, broccoli, spinach etc
<br>I agressively get nutrients via g-tube - natural whole foods.
<br>look at my post here
<br>g-tube advantage in the nutrition posts
<br>
<br><a href="http://forums.cysticfibrosis.com/messageview.cfm?catid=903&threadid=611812&enterthread=y">http://forums.cysticfibrosis.com/messageview.cfm?catid=903&threadid=611812&enterthread=y</a><br>
<br>I also juice greens - brussel sprouts, broccoli, spinach etc
<br>I agressively get nutrients via g-tube - natural whole foods.
<br>look at my post here
<br>g-tube advantage in the nutrition posts
<br>
<br><a href="http://forums.cysticfibrosis.com/messageview.cfm?catid=903&threadid=611812&enterthread=y">http://forums.cysticfibrosis.com/messageview.cfm?catid=903&threadid=611812&enterthread=y</a><br>
<p>Her nutritional needs need to be looked at. Most Cf's are not getting the right nutrition. I avoid gluten, sugar and processed foods. Try one month on a paleo diet and see if it helps.
<br>I also juice greens - brussel sprouts, broccoli, spinach etc
<br>I agressively get nutrients via g-tube - natural whole foods.
<br>look at my post here
<br>g-tube advantage in the nutrition posts
<br>
<br><a href="http://forums.cysticfibrosis.com/messageview.cfm?catid=903&threadid=611812&enterthread=y">http://forums.cysticfibrosis.com/messageview.cfm?catid=903&threadid=611812&enterthread=y</a><p><br>
<br>I also juice greens - brussel sprouts, broccoli, spinach etc
<br>I agressively get nutrients via g-tube - natural whole foods.
<br>look at my post here
<br>g-tube advantage in the nutrition posts
<br>
<br><a href="http://forums.cysticfibrosis.com/messageview.cfm?catid=903&threadid=611812&enterthread=y">http://forums.cysticfibrosis.com/messageview.cfm?catid=903&threadid=611812&enterthread=y</a><p><br>
Wow G-tube seems like it might be a little much for now. She's 13 and weighs almost 100 pounds but shes also only 4'10. Her nutrition is terrible.. I totally agree it needs a LOT of work. It's really difficult getting her to eat things she doesn't like so I'm looking for ways to hide the good things inside the things she will eat. I know as she gets a bit older, she will get better about this stuff but it's been an up hill battle. We've recently had some great success with natural smoothies enhanced with vitamins, so that's good.<br>
Wow G-tube seems like it might be a little much for now. She's 13 and weighs almost 100 pounds but shes also only 4'10. Her nutrition is terrible.. I totally agree it needs a LOT of work. It's really difficult getting her to eat things she doesn't like so I'm looking for ways to hide the good things inside the things she will eat. I know as she gets a bit older, she will get better about this stuff but it's been an up hill battle. We've recently had some great success with natural smoothies enhanced with vitamins, so that's good.<br>
Wow G-tube seems like it might be a little much for now. She's 13 and weighs almost 100 pounds but shes also only 4'10. Her nutrition is terrible.. I totally agree it needs a LOT of work. It's really difficult getting her to eat things she doesn't like so I'm looking for ways to hide the good things inside the things she will eat. I know as she gets a bit older, she will get better about this stuff but it's been an up hill battle. We've recently had some great success with natural smoothies enhanced with vitamins, so that's good.<br>
Other things to look at are different causes for low PFT's such as allergies/asthma for example. Also, do they test for Aspergillus and bacteria such as MAC? I hope she bounces back to her old self soon and that the docs find the right combination of treatment for her. This all must be very frustrating for all of you.
Hugs, Jenn 39 w/CF
Hugs, Jenn 39 w/CF
Other things to look at are different causes for low PFT's such as allergies/asthma for example. Also, do they test for Aspergillus and bacteria such as MAC? I hope she bounces back to her old self soon and that the docs find the right combination of treatment for her. This all must be very frustrating for all of you.
Hugs, Jenn 39 w/CF
Hugs, Jenn 39 w/CF
Other things to look at are different causes for low PFT's such as allergies/asthma for example. Also, do they test for Aspergillus and bacteria such as MAC? I hope she bounces back to her old self soon and that the docs find the right combination of treatment for her. This all must be very frustrating for all of you.
<br />
<br />Hugs, Jenn 39 w/CF
<br />
<br />Hugs, Jenn 39 w/CF