I have two girsl with CF. They are ages 9 and 7. My 7yr old just cultured the mycobacterium abscesses and we are waiting for a second culture. She has had intermitten fevers for over a year with no symptoms other than the fever. I just wonder if there is anyone out there experiencing this that I could run some questions by. She is very young to have cultured this, I know that. I have exhausted all the medical research papers and case studies online and would like to talk to someone that is living it.
mycobacterum abscesses
- Thread starter momuv2cf
- Start date
What our your child's symptoms, and have they been treated? It's just that I think we are heading into a whole knew world of CF now that this has come up. She is growing so many bugs and up to this point she has not had to have the mediport or a G tube. She does pulmozyme, TOBI every other, Colistine every other, Cephalexin, Hypertonic 10%, and the other basic CF care drugs like enzymes and Vitamins. She is allergic to Sulfa which makes it hard to treat her Stenotrophomonis. AGH! Otherwise she looks like a healthy kid and does normal kid stuff, you know how that is. I just wondered what I should be looking for and if it has affected your childrens lives in any way. I will check out the thread on the adult website too.
Thank you for responding
Gretchen
Meghan 9 w/cf
Faith 7 w/cf
Thank you for responding
Gretchen
Meghan 9 w/cf
Faith 7 w/cf
Actually when Luke cultured the bug we thought he was going to have a fantastic check-up and were very shocked. However, after looking back his PFT's were slowly declining and his weight dropped a bit. He has always been extremely healthy and in normal activities (baseball, soccer etc) M.abseccus is a complicated bug and therefore, our doctors have consulted with the North Carolina and Denver clinics and just recently doctors in France. Please feel free to e-mail and ask me any specifics that you might want to know.
Michelle
Michelle
I just went back and reread your questions and realized I didn't answer all of them. Luke does has a port now and is treated with Amakacin and Cefoxitin through IV's and Biaxcin orally. Like I said it is very complicated so as you progress with your daughter's treatment please feel free to ask questions. We have contact with an adult CF'er that has answered so many of ours. Don't panic and stay in there.
Try this link for a forum for mycobacteria information. It is very helpful.
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My sons have a mycobacteria similar to m. abscesses. We've been dealing with a number of treatments. It IS very frustrating.
Keep us up to date!
Jane
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My sons have a mycobacteria similar to m. abscesses. We've been dealing with a number of treatments. It IS very frustrating.
Keep us up to date!
Jane
Thank you Jane. After going to the adult discussions I did go to this website and it is very helpful. Michelle it is good to hear that you are seeking help in Denver because that is our clinic so she will be in good hands from the sounds of it. I will post as I am updated about her condition and if she ends up doing the treatment. Right now we are just dealing witht the fevers and tiredness, but "she doesn't need a nap!"
Gretchen -
Just wanting to see how the abcessus thing was going.
We talked to someone about an alternative treatment in Denver (KC ???) and our 7 yr. old was the youngest she had heard about with abcessus. We are considering going to Denver for a second opinion.
Are you dealing with the CF center or the NTM specaility center at National Jewish. I belive the NTM center treats mainly adults.
I was just curious as to what meds you all are on. Our son started to lose some hearing caused by the IV amakacin so we are off iv's for now and on oral bactrium and inhaled amakacin.
Just wanting to see how the abcessus thing was going.
We talked to someone about an alternative treatment in Denver (KC ???) and our 7 yr. old was the youngest she had heard about with abcessus. We are considering going to Denver for a second opinion.
Are you dealing with the CF center or the NTM specaility center at National Jewish. I belive the NTM center treats mainly adults.
I was just curious as to what meds you all are on. Our son started to lose some hearing caused by the IV amakacin so we are off iv's for now and on oral bactrium and inhaled amakacin.
My mycobacteria was discovered after a hospital stay 5 years ago. They couldn't tell me when I got it because you have to do a special sputum culuture to discover it (I used to only get routine cultures).
Anyhoo, I was told that while it is hard to treat/get rid of, it could be kept 'sleeping' with nebbed Amikacin, so I've been doing that for 5 years along with my general oral anitbotic (zithromax).
I haven't gotten sick again since 2001 (beside the random cold or congestion), and I haven't noticed much change in my health or routine. I do find I get tired easier at the end of the day - but that could just be my age sneaking up on me <img src="i/expressions/face-icon-small-smile.gif" border="0">
I do cough more because my throat gets irritated from the Amikacin - its a feeling you get used to, but when I was off of it for a couple of weeks (insurance issues) and my throat went back to normal, it was the most amazing feeling! I could take bigger clearer breathes without feeling any restriction - almost nice enough to want to skip treatments, but too afraid of the bacteria eating away at my lungs.
It is a nasty bug - I'm sorry to hear your daughter caught it so young. I guess the good part (hopefully) is that your daughter is young enough to not be overly drug-resistent yet. Theres very little I can take now outside of IVs to treat any future infections.
I wish your family the best - I know it must worry you a lot.
--Wallflower, 34 w/cf
Anyhoo, I was told that while it is hard to treat/get rid of, it could be kept 'sleeping' with nebbed Amikacin, so I've been doing that for 5 years along with my general oral anitbotic (zithromax).
I haven't gotten sick again since 2001 (beside the random cold or congestion), and I haven't noticed much change in my health or routine. I do find I get tired easier at the end of the day - but that could just be my age sneaking up on me <img src="i/expressions/face-icon-small-smile.gif" border="0">
I do cough more because my throat gets irritated from the Amikacin - its a feeling you get used to, but when I was off of it for a couple of weeks (insurance issues) and my throat went back to normal, it was the most amazing feeling! I could take bigger clearer breathes without feeling any restriction - almost nice enough to want to skip treatments, but too afraid of the bacteria eating away at my lungs.
It is a nasty bug - I'm sorry to hear your daughter caught it so young. I guess the good part (hopefully) is that your daughter is young enough to not be overly drug-resistent yet. Theres very little I can take now outside of IVs to treat any future infections.
I wish your family the best - I know it must worry you a lot.
--Wallflower, 34 w/cf
Wallflower -
Thanks for the response.
Which Mycobacteria do you have?
Sounds like Gretchen's daughter and our son are the same age and both have abcessus. This seems very rare in children. We are just trying to get as much info. as possible.
Glad to hear you are doing good in the inhaled Amakicin - That certainly gives us hope
Thanks for the response.
Which Mycobacteria do you have?
Sounds like Gretchen's daughter and our son are the same age and both have abcessus. This seems very rare in children. We are just trying to get as much info. as possible.
Glad to hear you are doing good in the inhaled Amakicin - That certainly gives us hope
beautifulsoul
Super Moderator
Hi momuv2cf,
Im 14 years old and I have been growing Mycobacteria for quite a long time now. Im not sure which kind it is but its the one thats really difficult to get rid of. I have been on Amakacin and cefoxitin I.V. just like the other anonymous poster. The doctors have tried many other things through out the years. I could probably take a whole page up telling you everything we've tried. So if you have any questions for me you can private message me or email me. My blog is beautifulsoul. have a nice day. <img src="i/expressions/face-icon-small-smile.gif" border="0"> Have faith! *BELIEVE*
-----------------
Amber/ turning 15 in August,yeah!
w/CF/CFRD
Im 14 years old and I have been growing Mycobacteria for quite a long time now. Im not sure which kind it is but its the one thats really difficult to get rid of. I have been on Amakacin and cefoxitin I.V. just like the other anonymous poster. The doctors have tried many other things through out the years. I could probably take a whole page up telling you everything we've tried. So if you have any questions for me you can private message me or email me. My blog is beautifulsoul. have a nice day. <img src="i/expressions/face-icon-small-smile.gif" border="0"> Have faith! *BELIEVE*
-----------------
Amber/ turning 15 in August,yeah!
w/CF/CFRD
I had to quit coming on this website for a while because it was really getting me down. I just revisted all of your posts' and I am very grateful for the information. Faith stopped culturing the Mycobacterium for a while and now she has had her third culture in the past year. We are trying one more month of Astreanam sp? inhaled and then she might have to do the port and IV meds. How are is your son Michelle? Amber, how are you feeling? Faith is coughing a little more lately and I think my mother's instinct is telling me that we are soon going to be heading down the road to treatment for this bug. I feel like I have processed it over time and can talk about it now without getting too down and trying to focus on our faith and staying positive. Faith has, and will, push all the boundaries when it comes to overcoming something. She is a fighter.
Gretchen
Gretchen
I had to quit coming on this website for a while because it was really getting me down. I just revisted all of your posts' and I am very grateful for the information. Faith stopped culturing the Mycobacterium for a while and now she has had her third culture in the past year. We are trying one more month of Astreanam sp? inhaled and then she might have to do the port and IV meds. How are is your son Michelle? Amber, how are you feeling? Faith is coughing a little more lately and I think my mother's instinct is telling me that we are soon going to be heading down the road to treatment for this bug. I feel like I have processed it over time and can talk about it now without getting too down and trying to focus on our faith and staying positive. Faith has, and will, push all the boundaries when it comes to overcoming something. She is a fighter.
Gretchen
Gretchen
I had to quit coming on this website for a while because it was really getting me down. I just revisted all of your posts' and I am very grateful for the information. Faith stopped culturing the Mycobacterium for a while and now she has had her third culture in the past year. We are trying one more month of Astreanam sp? inhaled and then she might have to do the port and IV meds. How are is your son Michelle? Amber, how are you feeling? Faith is coughing a little more lately and I think my mother's instinct is telling me that we are soon going to be heading down the road to treatment for this bug. I feel like I have processed it over time and can talk about it now without getting too down and trying to focus on our faith and staying positive. Faith has, and will, push all the boundaries when it comes to overcoming something. She is a fighter.
Gretchen
Gretchen