Burkholderia cepacia

Terry · Mar 7, 2008

Hi Tammy,

Sorry, I guess we were replying at the same time so I missed your post.

"Does your daughter cultured Cepacia, or are you just nervous about it?"

Marissa does not culture it yet. I am trying to find out about how to prevent it so I can do my best to see to it that she doesn't. It scares me as well.

She is positive for MRSA and has had PA several times. We don't know how she came about the MRSA and PA. She spent a lot of time in hospitals for "asthma" related issues before she was diagnosed when she was almost 4. By the time she was diagnosed she already had them. I wish there were more medical links that spoke in plain English about the things that affect CFers. But you have to be a scientist to figure this all out.

Terry · Mar 7, 2008

Hi Tammy,

Sorry, I guess we were replying at the same time so I missed your post.

"Does your daughter cultured Cepacia, or are you just nervous about it?"

Marissa does not culture it yet. I am trying to find out about how to prevent it so I can do my best to see to it that she doesn't. It scares me as well.

She is positive for MRSA and has had PA several times. We don't know how she came about the MRSA and PA. She spent a lot of time in hospitals for "asthma" related issues before she was diagnosed when she was almost 4. By the time she was diagnosed she already had them. I wish there were more medical links that spoke in plain English about the things that affect CFers. But you have to be a scientist to figure this all out.

Terry · Mar 7, 2008

Hi Tammy,

Sorry, I guess we were replying at the same time so I missed your post.

"Does your daughter cultured Cepacia, or are you just nervous about it?"

Marissa does not culture it yet. I am trying to find out about how to prevent it so I can do my best to see to it that she doesn't. It scares me as well.

She is positive for MRSA and has had PA several times. We don't know how she came about the MRSA and PA. She spent a lot of time in hospitals for "asthma" related issues before she was diagnosed when she was almost 4. By the time she was diagnosed she already had them. I wish there were more medical links that spoke in plain English about the things that affect CFers. But you have to be a scientist to figure this all out.

Terry · Mar 7, 2008

Hi Tammy,

Sorry, I guess we were replying at the same time so I missed your post.

"Does your daughter cultured Cepacia, or are you just nervous about it?"

Marissa does not culture it yet. I am trying to find out about how to prevent it so I can do my best to see to it that she doesn't. It scares me as well.

She is positive for MRSA and has had PA several times. We don't know how she came about the MRSA and PA. She spent a lot of time in hospitals for "asthma" related issues before she was diagnosed when she was almost 4. By the time she was diagnosed she already had them. I wish there were more medical links that spoke in plain English about the things that affect CFers. But you have to be a scientist to figure this all out.

Terry · Mar 7, 2008

Hi Tammy,
 
 Sorry, I guess we were replying at the same time so I missed your post.
 
 "Does your daughter cultured Cepacia, or are you just nervous about it?"
 
 Marissa does not culture it yet. I am trying to find out about how to prevent it so I can do my best to see to it that she doesn't. It scares me as well.
 
 She is positive for MRSA and has had PA several times. We don't know how she came about the MRSA and PA. She spent a lot of time in hospitals for "asthma" related issues before she was diagnosed when she was almost 4. By the time she was diagnosed she already had them. I wish there were more medical links that spoke in plain English about the things that affect CFers. But you have to be a scientist to figure this all out.

pjspiegle · Mar 7, 2008

I did not know about the onion specifically but I did know about the buffets.

Nathan had a burk cepacia scare a couple of years ago when it grew in one of his cultures. The good news is that it turned out to be a containment and he did not actually have it. But his doctors did tell us about buffets at that time and asked if we could avoid them as much as possible. His docs seemed to be more concerned with buffets than with a specific food. Buffets seemed to also be the concern because they are germ and bacteria magnets according to them. Which makes sense when you consider all the people handling, touching, putting back, sneezing, and coughing all over the food in a buffet. They are not fans of the salad bars at the hospital cafeteria for that reason as well.

I personally avoid rotten foods and do not let Nathan handle them at home already and he loves onions. In the home setting we have a little more control in that we can throw them if they are bad and wash all fresh fruits and vegetables before serving and we have the control over who is handling the food and knowing that hands are washed.

We do avoid buffets and never eat at them anymore since the B. Cepacia scare. For the reason that his docs asked us too and because after they explained why, it is so disgusting to even consider eating at a buffet now that I don't think I could do it without making myself sick thinking about it. I would be looking around the restraunt probably judging everyone and getting upset everytime someone sneezed or coughed while we were there. There are enough other options for eating out that a buffet just is not worth it to us.

I am aware that not all restruants are much better in handling of the food, but there are fewer people handling the food in a non-buffet restrauant. We ate at Red Lobster last night and he had the crab legs, which nonbody but him touched the actual meat because he had to crack em and pull it out. Then his shrimp came out still sizziling in the scampi sauce so the heat was killing anything there, the only risk was his mashed potatoes. Anyways, lots less risk than a buffet.

As much as I hate our ER, I am learning to be grateful for ours because if we have to take Nathan to the ER, they take him to a private room immediately upon arrival as if he had some very contagious disease to protect him from everyone else. They have never had us or allowed us to sit with the rest of the sick people, we get treated like the cancer patients, immonosuppressed and they often apologize if we are sitting in the waiting room for more than 5 minutes. We don't always get seen right away but we are at least separated from the rest of the patients.

pjspiegle · Mar 7, 2008

I did not know about the onion specifically but I did know about the buffets.

Nathan had a burk cepacia scare a couple of years ago when it grew in one of his cultures. The good news is that it turned out to be a containment and he did not actually have it. But his doctors did tell us about buffets at that time and asked if we could avoid them as much as possible. His docs seemed to be more concerned with buffets than with a specific food. Buffets seemed to also be the concern because they are germ and bacteria magnets according to them. Which makes sense when you consider all the people handling, touching, putting back, sneezing, and coughing all over the food in a buffet. They are not fans of the salad bars at the hospital cafeteria for that reason as well.

I personally avoid rotten foods and do not let Nathan handle them at home already and he loves onions. In the home setting we have a little more control in that we can throw them if they are bad and wash all fresh fruits and vegetables before serving and we have the control over who is handling the food and knowing that hands are washed.

We do avoid buffets and never eat at them anymore since the B. Cepacia scare. For the reason that his docs asked us too and because after they explained why, it is so disgusting to even consider eating at a buffet now that I don't think I could do it without making myself sick thinking about it. I would be looking around the restraunt probably judging everyone and getting upset everytime someone sneezed or coughed while we were there. There are enough other options for eating out that a buffet just is not worth it to us.

I am aware that not all restruants are much better in handling of the food, but there are fewer people handling the food in a non-buffet restrauant. We ate at Red Lobster last night and he had the crab legs, which nonbody but him touched the actual meat because he had to crack em and pull it out. Then his shrimp came out still sizziling in the scampi sauce so the heat was killing anything there, the only risk was his mashed potatoes. Anyways, lots less risk than a buffet.

As much as I hate our ER, I am learning to be grateful for ours because if we have to take Nathan to the ER, they take him to a private room immediately upon arrival as if he had some very contagious disease to protect him from everyone else. They have never had us or allowed us to sit with the rest of the sick people, we get treated like the cancer patients, immonosuppressed and they often apologize if we are sitting in the waiting room for more than 5 minutes. We don't always get seen right away but we are at least separated from the rest of the patients.

pjspiegle · Mar 7, 2008

I did not know about the onion specifically but I did know about the buffets.

Nathan had a burk cepacia scare a couple of years ago when it grew in one of his cultures. The good news is that it turned out to be a containment and he did not actually have it. But his doctors did tell us about buffets at that time and asked if we could avoid them as much as possible. His docs seemed to be more concerned with buffets than with a specific food. Buffets seemed to also be the concern because they are germ and bacteria magnets according to them. Which makes sense when you consider all the people handling, touching, putting back, sneezing, and coughing all over the food in a buffet. They are not fans of the salad bars at the hospital cafeteria for that reason as well.

I personally avoid rotten foods and do not let Nathan handle them at home already and he loves onions. In the home setting we have a little more control in that we can throw them if they are bad and wash all fresh fruits and vegetables before serving and we have the control over who is handling the food and knowing that hands are washed.

We do avoid buffets and never eat at them anymore since the B. Cepacia scare. For the reason that his docs asked us too and because after they explained why, it is so disgusting to even consider eating at a buffet now that I don't think I could do it without making myself sick thinking about it. I would be looking around the restraunt probably judging everyone and getting upset everytime someone sneezed or coughed while we were there. There are enough other options for eating out that a buffet just is not worth it to us.

I am aware that not all restruants are much better in handling of the food, but there are fewer people handling the food in a non-buffet restrauant. We ate at Red Lobster last night and he had the crab legs, which nonbody but him touched the actual meat because he had to crack em and pull it out. Then his shrimp came out still sizziling in the scampi sauce so the heat was killing anything there, the only risk was his mashed potatoes. Anyways, lots less risk than a buffet.

As much as I hate our ER, I am learning to be grateful for ours because if we have to take Nathan to the ER, they take him to a private room immediately upon arrival as if he had some very contagious disease to protect him from everyone else. They have never had us or allowed us to sit with the rest of the sick people, we get treated like the cancer patients, immonosuppressed and they often apologize if we are sitting in the waiting room for more than 5 minutes. We don't always get seen right away but we are at least separated from the rest of the patients.

pjspiegle · Mar 7, 2008

I did not know about the onion specifically but I did know about the buffets.

Nathan had a burk cepacia scare a couple of years ago when it grew in one of his cultures. The good news is that it turned out to be a containment and he did not actually have it. But his doctors did tell us about buffets at that time and asked if we could avoid them as much as possible. His docs seemed to be more concerned with buffets than with a specific food. Buffets seemed to also be the concern because they are germ and bacteria magnets according to them. Which makes sense when you consider all the people handling, touching, putting back, sneezing, and coughing all over the food in a buffet. They are not fans of the salad bars at the hospital cafeteria for that reason as well.

I personally avoid rotten foods and do not let Nathan handle them at home already and he loves onions. In the home setting we have a little more control in that we can throw them if they are bad and wash all fresh fruits and vegetables before serving and we have the control over who is handling the food and knowing that hands are washed.

We do avoid buffets and never eat at them anymore since the B. Cepacia scare. For the reason that his docs asked us too and because after they explained why, it is so disgusting to even consider eating at a buffet now that I don't think I could do it without making myself sick thinking about it. I would be looking around the restraunt probably judging everyone and getting upset everytime someone sneezed or coughed while we were there. There are enough other options for eating out that a buffet just is not worth it to us.

I am aware that not all restruants are much better in handling of the food, but there are fewer people handling the food in a non-buffet restrauant. We ate at Red Lobster last night and he had the crab legs, which nonbody but him touched the actual meat because he had to crack em and pull it out. Then his shrimp came out still sizziling in the scampi sauce so the heat was killing anything there, the only risk was his mashed potatoes. Anyways, lots less risk than a buffet.

As much as I hate our ER, I am learning to be grateful for ours because if we have to take Nathan to the ER, they take him to a private room immediately upon arrival as if he had some very contagious disease to protect him from everyone else. They have never had us or allowed us to sit with the rest of the sick people, we get treated like the cancer patients, immonosuppressed and they often apologize if we are sitting in the waiting room for more than 5 minutes. We don't always get seen right away but we are at least separated from the rest of the patients.

pjspiegle · Mar 7, 2008

I did not know about the onion specifically but I did know about the buffets.
 
 Nathan had a burk cepacia scare a couple of years ago when it grew in one of his cultures. The good news is that it turned out to be a containment and he did not actually have it. But his doctors did tell us about buffets at that time and asked if we could avoid them as much as possible. His docs seemed to be more concerned with buffets than with a specific food. Buffets seemed to also be the concern because they are germ and bacteria magnets according to them. Which makes sense when you consider all the people handling, touching, putting back, sneezing, and coughing all over the food in a buffet. They are not fans of the salad bars at the hospital cafeteria for that reason as well.
 
 I personally avoid rotten foods and do not let Nathan handle them at home already and he loves onions. In the home setting we have a little more control in that we can throw them if they are bad and wash all fresh fruits and vegetables before serving and we have the control over who is handling the food and knowing that hands are washed.
 
 We do avoid buffets and never eat at them anymore since the B. Cepacia scare. For the reason that his docs asked us too and because after they explained why, it is so disgusting to even consider eating at a buffet now that I don't think I could do it without making myself sick thinking about it. I would be looking around the restraunt probably judging everyone and getting upset everytime someone sneezed or coughed while we were there. There are enough other options for eating out that a buffet just is not worth it to us.
 
 I am aware that not all restruants are much better in handling of the food, but there are fewer people handling the food in a non-buffet restrauant. We ate at Red Lobster last night and he had the crab legs, which nonbody but him touched the actual meat because he had to crack em and pull it out. Then his shrimp came out still sizziling in the scampi sauce so the heat was killing anything there, the only risk was his mashed potatoes. Anyways, lots less risk than a buffet.
 
 As much as I hate our ER, I am learning to be grateful for ours because if we have to take Nathan to the ER, they take him to a private room immediately upon arrival as if he had some very contagious disease to protect him from everyone else. They have never had us or allowed us to sit with the rest of the sick people, we get treated like the cancer patients, immonosuppressed and they often apologize if we are sitting in the waiting room for more than 5 minutes. We don't always get seen right away but we are at least separated from the rest of the patients.

Terry · Mar 7, 2008

Marissa is whisked away quickly in the ER as well. As soon as we go into any office other than her CF Clinic I tell them she has CF and they sit us somewhere by ourselves.

My other daughter doesn't have CF, she just has a friend who thinks it might be funny to pull chairs out from under people. My daughter had a dent instead of a knot in her head from that (when she went to sit on the stool that was no longer there she fell backwards and hit her head on the corner of a machine in tech ed) and her normal doctor said that a dent has to be seen in the ER. Luckily she only has "soft tissue" damage and not a scull fracture.

Terry · Mar 7, 2008

Marissa is whisked away quickly in the ER as well. As soon as we go into any office other than her CF Clinic I tell them she has CF and they sit us somewhere by ourselves.

My other daughter doesn't have CF, she just has a friend who thinks it might be funny to pull chairs out from under people. My daughter had a dent instead of a knot in her head from that (when she went to sit on the stool that was no longer there she fell backwards and hit her head on the corner of a machine in tech ed) and her normal doctor said that a dent has to be seen in the ER. Luckily she only has "soft tissue" damage and not a scull fracture.

Terry · Mar 7, 2008

Marissa is whisked away quickly in the ER as well. As soon as we go into any office other than her CF Clinic I tell them she has CF and they sit us somewhere by ourselves.

My other daughter doesn't have CF, she just has a friend who thinks it might be funny to pull chairs out from under people. My daughter had a dent instead of a knot in her head from that (when she went to sit on the stool that was no longer there she fell backwards and hit her head on the corner of a machine in tech ed) and her normal doctor said that a dent has to be seen in the ER. Luckily she only has "soft tissue" damage and not a scull fracture.

Terry · Mar 7, 2008

Marissa is whisked away quickly in the ER as well. As soon as we go into any office other than her CF Clinic I tell them she has CF and they sit us somewhere by ourselves.

My other daughter doesn't have CF, she just has a friend who thinks it might be funny to pull chairs out from under people. My daughter had a dent instead of a knot in her head from that (when she went to sit on the stool that was no longer there she fell backwards and hit her head on the corner of a machine in tech ed) and her normal doctor said that a dent has to be seen in the ER. Luckily she only has "soft tissue" damage and not a scull fracture.

Terry · Mar 7, 2008

Marissa is whisked away quickly in the ER as well. As soon as we go into any office other than her CF Clinic I tell them she has CF and they sit us somewhere by ourselves.
 
 My other daughter doesn't have CF, she just has a friend who thinks it might be funny to pull chairs out from under people. My daughter had a dent instead of a knot in her head from that (when she went to sit on the stool that was no longer there she fell backwards and hit her head on the corner of a machine in tech ed) and her normal doctor said that a dent has to be seen in the ER. Luckily she only has "soft tissue" damage and not a scull fracture.

pjspiegle · Mar 7, 2008

Ouch!!!!!! Sorry to hear that. Glad it was not a skull fracture. Hope she gets better soon.

I forget how differently it is when I have to take one of my other kids and the difference in treatment sometimes.

pjspiegle · Mar 7, 2008

Ouch!!!!!! Sorry to hear that. Glad it was not a skull fracture. Hope she gets better soon.

I forget how differently it is when I have to take one of my other kids and the difference in treatment sometimes.

pjspiegle · Mar 7, 2008

Ouch!!!!!! Sorry to hear that. Glad it was not a skull fracture. Hope she gets better soon.

I forget how differently it is when I have to take one of my other kids and the difference in treatment sometimes.

pjspiegle · Mar 7, 2008

Ouch!!!!!! Sorry to hear that. Glad it was not a skull fracture. Hope she gets better soon.

I forget how differently it is when I have to take one of my other kids and the difference in treatment sometimes.

pjspiegle · Mar 7, 2008

Ouch!!!!!! Sorry to hear that. Glad it was not a skull fracture. Hope she gets better soon.
 
 I forget how differently it is when I have to take one of my other kids and the difference in treatment sometimes.

Burkholderia cepacia

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