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Question about Cepacia.......
- Thread starter anonymous
- Start date
Angie-
I have a 19 year old son tha began growing Cepacia 2 years ago. It the beginning it was completely devasting due to the fact that all of the information you read about it is rather scary and people tend to run and hide at the mere mention of the word.
My advice. Infection Control and lots of it. You can't change the fact that he is growing it but you can do your part in making sure it isn't spread to another person. I have been known to stand on a soap box on that issue and have really ticked some people off in the process but when it comes to the spread of Cepacia, it is really important.
My doctor was the best source of information. He wouldn't stand for the only printed information. He made calls across the country and treats him very aggressively. Due to this, he has really stabilized( His lung functions were dropping rapidly in the beginning). In a lot of ways we don't do much different in the regular treatment of CF. I am even more cautious about keeping sick people away. We jump on IV antibiotics a lot quicker and have found a great inhaled medication that really helped. Once the test results come back and they find the strain of Cepacia and what antibiotics he is resistant to, it will help guide your doctor in the best treatment. Just know that with Cepacia, sometimes they reat with antibiotics that the cultures say he should be resistant to but with a "cocktail" of antibiotics they actually work very well. Don't let what you little you read scare you. Infection control and aggressive treatment seem to be the key.
I don't have all the answers and seem fairly new to the bacteria myself. If you to the Adult section, there have been some post on Cepacia there. Diane seems to have not only a great attitude with dealing with it but also very knowledgable. Her words really helped me. Thanks Diane if your are there.
Michelle
I have a 19 year old son tha began growing Cepacia 2 years ago. It the beginning it was completely devasting due to the fact that all of the information you read about it is rather scary and people tend to run and hide at the mere mention of the word.
My advice. Infection Control and lots of it. You can't change the fact that he is growing it but you can do your part in making sure it isn't spread to another person. I have been known to stand on a soap box on that issue and have really ticked some people off in the process but when it comes to the spread of Cepacia, it is really important.
My doctor was the best source of information. He wouldn't stand for the only printed information. He made calls across the country and treats him very aggressively. Due to this, he has really stabilized( His lung functions were dropping rapidly in the beginning). In a lot of ways we don't do much different in the regular treatment of CF. I am even more cautious about keeping sick people away. We jump on IV antibiotics a lot quicker and have found a great inhaled medication that really helped. Once the test results come back and they find the strain of Cepacia and what antibiotics he is resistant to, it will help guide your doctor in the best treatment. Just know that with Cepacia, sometimes they reat with antibiotics that the cultures say he should be resistant to but with a "cocktail" of antibiotics they actually work very well. Don't let what you little you read scare you. Infection control and aggressive treatment seem to be the key.
I don't have all the answers and seem fairly new to the bacteria myself. If you to the Adult section, there have been some post on Cepacia there. Diane seems to have not only a great attitude with dealing with it but also very knowledgable. Her words really helped me. Thanks Diane if your are there.
Michelle
Thanks Michelle,
We are just really aggravated because Brady is only 4 years old and he seems to get the raw deal on everything with the crappy disease. It is like we try our best to keep things clean and not let him get this and now he is growing it. I don't understand how he got it. I read alot of the others posts here and I get really scared because I feel that he is on the more severe side of this CF, he has already had 3 clean-outs in his life and has been in the hospital at least 125 day of his life. That really scares me, I don't know what I would do without him and I am "usually" really positive about his cf --- but now I am getting scared.
Thanks again.
Angie
We are just really aggravated because Brady is only 4 years old and he seems to get the raw deal on everything with the crappy disease. It is like we try our best to keep things clean and not let him get this and now he is growing it. I don't understand how he got it. I read alot of the others posts here and I get really scared because I feel that he is on the more severe side of this CF, he has already had 3 clean-outs in his life and has been in the hospital at least 125 day of his life. That really scares me, I don't know what I would do without him and I am "usually" really positive about his cf --- but now I am getting scared.
Thanks again.
Angie
You are not alone in your feelings. it took my a long time before I get just get really pissed off. It was a saying in our family "if it is falls the small percent group, it will happen to Cory" Before Cory even hit 2, I tell everyone I was going to change my mailing address to the hospital, I think we were there more than home.
Every part of your body that this disease can affect, Cory has dealt with. Diabetes, kidney problems, sinus problems, bone problems. I love it when they ask at places to describe his symptoms, I never have enough space. I defiantely understand the "raw" deal. There are a lot of times I have a hard time being on message boards because I feel Cory has been cheated. He is a great kid (ok, Adult) with a winning smile and a fighter. He has a strong will and I am sure that is what has got him through the worse times.
Hang in there Angie. I can't promise you roses. But I am sure you too have a great fighter on your hands. Vent and cry wen you need to.
Anytime you need to talk, just let me know
Michelle
My email is mmohr67@yaoo.com
Every part of your body that this disease can affect, Cory has dealt with. Diabetes, kidney problems, sinus problems, bone problems. I love it when they ask at places to describe his symptoms, I never have enough space. I defiantely understand the "raw" deal. There are a lot of times I have a hard time being on message boards because I feel Cory has been cheated. He is a great kid (ok, Adult) with a winning smile and a fighter. He has a strong will and I am sure that is what has got him through the worse times.
Hang in there Angie. I can't promise you roses. But I am sure you too have a great fighter on your hands. Vent and cry wen you need to.
Anytime you need to talk, just let me know
Michelle
My email is mmohr67@yaoo.com
ok-I feel like an idot. I posted my e-mail twice. I know you are scared especially because the people you have read about are older and your son is still small. All in opinion, I think that is a positive thing. They have some new treatments out(not FDA approved but almost) and have learned different ways. so before he can develop a lot of lung damage and have Cepacia on top of it, he is still young enough to battle! Cepacia isn't a good thing but.........once you get the reports from his cultures back you will know a great deal more. Those reports will tell you what strain he has and what antibiotics he is resistant too. Personally, I have found that if you have a doctor that is very open and sharing with you, the more comfort you will have. If they don't demand it! If your doctor doesn't know the lastest in the Cepacia battle then insist he does, or do it for him and make the suggestions. Knowledge is a big key and you are well on your way but by reaching out and asking.
Michelle
Michelle