My son with Cf who is 17 has become very defiant with his illness. He refuses to do his treatments or take his medicines. His lung functions are failing. His functions dropped from 78% n Jan to 54 % in April. After two week in the hospital they came back up to 76%. They did a culture on him and he cultured the neisseria elongata bacillformis. They said is was a micro bacteria and would be hard to treat. He still refuses to do his meds. He coughs constantly. It is so sad to hear him coughing the way he does. We went back to the dr in June and his functions were back down to 58%. They redid the culture and it showed this same result. We have to go back on July 26. I don't know what to do. They say they can't even begin to treat this new bug till he starts doing his treatments. No amt of counseling or rewards are helping. We even sent his off 9 mths ago to in treatment for 2mths of counseling and how to deal with his Cf. Has anyone every heard of this culture. Sorry this is so long.
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Neisseria elongata/bacilliformis
- Thread starter kandim
- Start date
My son with Cf who is 17 has become very defiant with his illness. He refuses to do his treatments or take his medicines. His lung functions are failing. His functions dropped from 78% n Jan to 54 % in April. After two week in the hospital they came back up to 76%. They did a culture on him and he cultured the neisseria elongata bacillformis. They said is was a micro bacteria and would be hard to treat. He still refuses to do his meds. He coughs constantly. It is so sad to hear him coughing the way he does. We went back to the dr in June and his functions were back down to 58%. They redid the culture and it showed this same result. We have to go back on July 26. I don't know what to do. They say they can't even begin to treat this new bug till he starts doing his treatments. No amt of counseling or rewards are helping. We even sent his off 9 mths ago to in treatment for 2mths of counseling and how to deal with his Cf. Has anyone every heard of this culture. Sorry this is so long.
My son with Cf who is 17 has become very defiant with his illness. He refuses to do his treatments or take his medicines. His lung functions are failing. His functions dropped from 78% n Jan to 54 % in April. After two week in the hospital they came back up to 76%. They did a culture on him and he cultured the neisseria elongata bacillformis. They said is was a micro bacteria and would be hard to treat. He still refuses to do his meds. He coughs constantly. It is so sad to hear him coughing the way he does. We went back to the dr in June and his functions were back down to 58%. They redid the culture and it showed this same result. We have to go back on July 26. I don't know what to do. They say they can't even begin to treat this new bug till he starts doing his treatments. No amt of counseling or rewards are helping. We even sent his off 9 mths ago to in treatment for 2mths of counseling and how to deal with his Cf. Has anyone every heard of this culture. Sorry this is so long.
Hi, I don't know anything about the culture. But I do understand it's very hard when they don't want to do what's necessary for their health. My ds, 16, started creon and aquadeks and extra vitamins a few months ago. He doesn't mind the aquadeks and vitamins too much as I think he can tell they make him feel better. But he doesn't like taking the creon and says he doesn't think he needs them. I think at this age they really don't want to feel different from their friends.
It sounds like you are doing everything you can to help your son. I really hope you can find some way to get him to do his treatments.
Good luck<img src="i/expressions/face-icon-small-smile.gif" border="0">
It sounds like you are doing everything you can to help your son. I really hope you can find some way to get him to do his treatments.
Good luck<img src="i/expressions/face-icon-small-smile.gif" border="0">
Hi, I don't know anything about the culture. But I do understand it's very hard when they don't want to do what's necessary for their health. My ds, 16, started creon and aquadeks and extra vitamins a few months ago. He doesn't mind the aquadeks and vitamins too much as I think he can tell they make him feel better. But he doesn't like taking the creon and says he doesn't think he needs them. I think at this age they really don't want to feel different from their friends.
It sounds like you are doing everything you can to help your son. I really hope you can find some way to get him to do his treatments.
Good luck<img src="i/expressions/face-icon-small-smile.gif" border="0">
It sounds like you are doing everything you can to help your son. I really hope you can find some way to get him to do his treatments.
Good luck<img src="i/expressions/face-icon-small-smile.gif" border="0">
Hi, I don't know anything about the culture. But I do understand it's very hard when they don't want to do what's necessary for their health. My ds, 16, started creon and aquadeks and extra vitamins a few months ago. He doesn't mind the aquadeks and vitamins too much as I think he can tell they make him feel better. But he doesn't like taking the creon and says he doesn't think he needs them. I think at this age they really don't want to feel different from their friends.
<br />
<br />It sounds like you are doing everything you can to help your son. I really hope you can find some way to get him to do his treatments.
<br />
<br />Good luck<img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />It sounds like you are doing everything you can to help your son. I really hope you can find some way to get him to do his treatments.
<br />
<br />Good luck<img src="i/expressions/face-icon-small-smile.gif" border="0">
N
NanaOf8GirlsAndCounting
Guest
Kandi, the teen yrs are the hardest. Even without CF it can be a very difficult period for all. What works with one teen won't with another, however, with all the gadgets that our teens have now, it would break my son's heart to part with any of them. TV, Cell phone, IPOD, computer, gaming systems, Car. But that is exactly what worked for my stubborn teens. Everything goes and when they earn them back they come back one at a time. Sure they are ticked off in the beginning but life is hard and it helped them realize I wasn't asking for alot compared to what they already had. A few days in their room with a book and walking made them alot more agreedable in the end. It might sound like blackmail but I call it parenting.
N
NanaOf8GirlsAndCounting
Guest
Kandi, the teen yrs are the hardest. Even without CF it can be a very difficult period for all. What works with one teen won't with another, however, with all the gadgets that our teens have now, it would break my son's heart to part with any of them. TV, Cell phone, IPOD, computer, gaming systems, Car. But that is exactly what worked for my stubborn teens. Everything goes and when they earn them back they come back one at a time. Sure they are ticked off in the beginning but life is hard and it helped them realize I wasn't asking for alot compared to what they already had. A few days in their room with a book and walking made them alot more agreedable in the end. It might sound like blackmail but I call it parenting.
N
NanaOf8GirlsAndCounting
Guest
Kandi, the teen yrs are the hardest. Even without CF it can be a very difficult period for all. What works with one teen won't with another, however, with all the gadgets that our teens have now, it would break my son's heart to part with any of them. TV, Cell phone, IPOD, computer, gaming systems, Car. But that is exactly what worked for my stubborn teens. Everything goes and when they earn them back they come back one at a time. Sure they are ticked off in the beginning but life is hard and it helped them realize I wasn't asking for alot compared to what they already had. A few days in their room with a book and walking made them alot more agreedable in the end. It might sound like blackmail but I call it parenting.
Thanks Nana of 8 girls (by the way what a blessing) i completly agree, Unfortunately I have taken everything electronic. Me and his dad has even agreed that until he takes responsibility for his life by doing his meds that he will not have a drivers license. We took him to get his learners when he was 15 and a half. Even though he is seventeen he has gotten the privelage of the freedom to leave on his own without walking. We feel if he can't trust him with his life and take responsibility of himself we can't trust him with driving a car. We told him when he shows us for atleast 3 mths of proper medical care on his part we would take him to get his dl. We have been waiting a year. Tough love its hard but must be done. Thank you
Thanks Nana of 8 girls (by the way what a blessing) i completly agree, Unfortunately I have taken everything electronic. Me and his dad has even agreed that until he takes responsibility for his life by doing his meds that he will not have a drivers license. We took him to get his learners when he was 15 and a half. Even though he is seventeen he has gotten the privelage of the freedom to leave on his own without walking. We feel if he can't trust him with his life and take responsibility of himself we can't trust him with driving a car. We told him when he shows us for atleast 3 mths of proper medical care on his part we would take him to get his dl. We have been waiting a year. Tough love its hard but must be done. Thank you
Thanks Nana of 8 girls (by the way what a blessing) i completly agree, Unfortunately I have taken everything electronic. Me and his dad has even agreed that until he takes responsibility for his life by doing his meds that he will not have a drivers license. We took him to get his learners when he was 15 and a half. Even though he is seventeen he has gotten the privelage of the freedom to leave on his own without walking. We feel if he can't trust him with his life and take responsibility of himself we can't trust him with driving a car. We told him when he shows us for atleast 3 mths of proper medical care on his part we would take him to get his dl. We have been waiting a year. Tough love its hard but must be done. Thank you