My 10 yr old is having a horrible year..

[ClairesMom]

Thank you both so much for your responses. Yes, we are at an accredited CF center, Children's Hospital Los Angeles, and I know they are a large, well established center with tons of CF kids. She has had pseudomonas before which we treated with a month on/month off of inhaled Tobi and it hasn't grown again for a few years..hopefully it won't come back. She also has Aspergilllus, MRSA, and Stenotrophamonus..all of which they treat with IV antibiotics during her hospital stays. The thing I am really excited to look in to is this Hypertonic Saline information - I realize now that all this started about when she started the HS!! That is very helpful information and I wonder if the MRSA is just coming right back every time because they have us on the HS two times a day! Thanks a mil for your help.
She woke up today again with slight fever and lots of night coughing - we have to do something different, that's for sure!
Melissa

 

[ClairesMom]

Thank you both so much for your responses. Yes, we are at an accredited CF center, Children's Hospital Los Angeles, and I know they are a large, well established center with tons of CF kids. She has had pseudomonas before which we treated with a month on/month off of inhaled Tobi and it hasn't grown again for a few years..hopefully it won't come back. She also has Aspergilllus, MRSA, and Stenotrophamonus..all of which they treat with IV antibiotics during her hospital stays. The thing I am really excited to look in to is this Hypertonic Saline information - I realize now that all this started about when she started the HS!! That is very helpful information and I wonder if the MRSA is just coming right back every time because they have us on the HS two times a day! Thanks a mil for your help.
She woke up today again with slight fever and lots of night coughing - we have to do something different, that's for sure!
Melissa

 

[ClairesMom]

Thank you both so much for your responses. Yes, we are at an accredited CF center, Children's Hospital Los Angeles, and I know they are a large, well established center with tons of CF kids. She has had pseudomonas before which we treated with a month on/month off of inhaled Tobi and it hasn't grown again for a few years..hopefully it won't come back. She also has Aspergilllus, MRSA, and Stenotrophamonus..all of which they treat with IV antibiotics during her hospital stays. The thing I am really excited to look in to is this Hypertonic Saline information - I realize now that all this started about when she started the HS!! That is very helpful information and I wonder if the MRSA is just coming right back every time because they have us on the HS two times a day! Thanks a mil for your help.
She woke up today again with slight fever and lots of night coughing - we have to do something different, that's for sure!
Melissa

 

[ClairesMom]

Thank you both so much for your responses. Yes, we are at an accredited CF center, Children's Hospital Los Angeles, and I know they are a large, well established center with tons of CF kids. She has had pseudomonas before which we treated with a month on/month off of inhaled Tobi and it hasn't grown again for a few years..hopefully it won't come back. She also has Aspergilllus, MRSA, and Stenotrophamonus..all of which they treat with IV antibiotics during her hospital stays. The thing I am really excited to look in to is this Hypertonic Saline information - I realize now that all this started about when she started the HS!! That is very helpful information and I wonder if the MRSA is just coming right back every time because they have us on the HS two times a day! Thanks a mil for your help.
She woke up today again with slight fever and lots of night coughing - we have to do something different, that's for sure!
Melissa

 

[ClairesMom]

Thank you both so much for your responses. Yes, we are at an accredited CF center, Children's Hospital Los Angeles, and I know they are a large, well established center with tons of CF kids. She has had pseudomonas before which we treated with a month on/month off of inhaled Tobi and it hasn't grown again for a few years..hopefully it won't come back. She also has Aspergilllus, MRSA, and Stenotrophamonus..all of which they treat with IV antibiotics during her hospital stays. The thing I am really excited to look in to is this Hypertonic Saline information - I realize now that all this started about when she started the HS!! That is very helpful information and I wonder if the MRSA is just coming right back every time because they have us on the HS two times a day! Thanks a mil for your help.
She woke up today again with slight fever and lots of night coughing - we have to do something different, that's for sure!
Melissa

 

[Jane]

It does sound like they're being thorough, but its frustrating when nothing comes up. I understand what its like too. My son had a similar year last year but we knew it was a mycobacteria causing the problems.

I would recommend seeking another opinion too. The more people you have looking for answers the better.

Good luck

 

[Jane]

It does sound like they're being thorough, but its frustrating when nothing comes up. I understand what its like too. My son had a similar year last year but we knew it was a mycobacteria causing the problems.

I would recommend seeking another opinion too. The more people you have looking for answers the better.

Good luck

 

[Jane]

It does sound like they're being thorough, but its frustrating when nothing comes up. I understand what its like too. My son had a similar year last year but we knew it was a mycobacteria causing the problems.

I would recommend seeking another opinion too. The more people you have looking for answers the better.

Good luck

 

[Jane]

It does sound like they're being thorough, but its frustrating when nothing comes up. I understand what its like too. My son had a similar year last year but we knew it was a mycobacteria causing the problems.

I would recommend seeking another opinion too. The more people you have looking for answers the better.

Good luck

 

[Jane]

It does sound like they're being thorough, but its frustrating when nothing comes up. I understand what its like too. My son had a similar year last year but we knew it was a mycobacteria causing the problems.

I would recommend seeking another opinion too. The more people you have looking for answers the better.

Good luck

 

[anon22]

Melissa,

You are not alone by no means...I am going through VERY similar times as your Claire. I am 19 years old. Have cultured Pseudo since I was 15 and had it for 2 years. Then I eradicated the pseudo. I constantly grow Staph.A, my mucous is green the whole time. Even after Iv's it is green, I was in hospital 6 times this year which is in line to my 8 times through 2006. Hopefully I dont beat 8 this year. I came out of hospital last week not that well. The doctors themselves have given up a little hope. I have been seen by one of the top CF pulmonologist in this country. I am going to see another great doctor in a few weeks to have a bronchoscopy as they think I whether have a mucus plug or might need a lobectomy of my left lobe. My lung function seems to be dropping also...20% down from this time last year. I am praying that they find something wrong in the bronchoscopy as I am on flufloxacillin all my life which aint working for me even though lab says it is the only thing that will kill the Staph.A. You are not alone, I am in a very similar position. Although I would push for other treatments as she is so young. How is her lung function? Is it stable? Sorry for the long post I dunno if I answered any of your questions although I hope you feel you aint alone when you finish reading my post as I felt that way reading your post. Kind of a nice feeling to know you aint alone even though it aint in the best of circumstances.

Thanks for reading the waffle.

 

[anon22]

Melissa,

You are not alone by no means...I am going through VERY similar times as your Claire. I am 19 years old. Have cultured Pseudo since I was 15 and had it for 2 years. Then I eradicated the pseudo. I constantly grow Staph.A, my mucous is green the whole time. Even after Iv's it is green, I was in hospital 6 times this year which is in line to my 8 times through 2006. Hopefully I dont beat 8 this year. I came out of hospital last week not that well. The doctors themselves have given up a little hope. I have been seen by one of the top CF pulmonologist in this country. I am going to see another great doctor in a few weeks to have a bronchoscopy as they think I whether have a mucus plug or might need a lobectomy of my left lobe. My lung function seems to be dropping also...20% down from this time last year. I am praying that they find something wrong in the bronchoscopy as I am on flufloxacillin all my life which aint working for me even though lab says it is the only thing that will kill the Staph.A. You are not alone, I am in a very similar position. Although I would push for other treatments as she is so young. How is her lung function? Is it stable? Sorry for the long post I dunno if I answered any of your questions although I hope you feel you aint alone when you finish reading my post as I felt that way reading your post. Kind of a nice feeling to know you aint alone even though it aint in the best of circumstances.

Thanks for reading the waffle.

 

[anon22]

Melissa,

You are not alone by no means...I am going through VERY similar times as your Claire. I am 19 years old. Have cultured Pseudo since I was 15 and had it for 2 years. Then I eradicated the pseudo. I constantly grow Staph.A, my mucous is green the whole time. Even after Iv's it is green, I was in hospital 6 times this year which is in line to my 8 times through 2006. Hopefully I dont beat 8 this year. I came out of hospital last week not that well. The doctors themselves have given up a little hope. I have been seen by one of the top CF pulmonologist in this country. I am going to see another great doctor in a few weeks to have a bronchoscopy as they think I whether have a mucus plug or might need a lobectomy of my left lobe. My lung function seems to be dropping also...20% down from this time last year. I am praying that they find something wrong in the bronchoscopy as I am on flufloxacillin all my life which aint working for me even though lab says it is the only thing that will kill the Staph.A. You are not alone, I am in a very similar position. Although I would push for other treatments as she is so young. How is her lung function? Is it stable? Sorry for the long post I dunno if I answered any of your questions although I hope you feel you aint alone when you finish reading my post as I felt that way reading your post. Kind of a nice feeling to know you aint alone even though it aint in the best of circumstances.

Thanks for reading the waffle.

 

[anon22]

Melissa,

You are not alone by no means...I am going through VERY similar times as your Claire. I am 19 years old. Have cultured Pseudo since I was 15 and had it for 2 years. Then I eradicated the pseudo. I constantly grow Staph.A, my mucous is green the whole time. Even after Iv's it is green, I was in hospital 6 times this year which is in line to my 8 times through 2006. Hopefully I dont beat 8 this year. I came out of hospital last week not that well. The doctors themselves have given up a little hope. I have been seen by one of the top CF pulmonologist in this country. I am going to see another great doctor in a few weeks to have a bronchoscopy as they think I whether have a mucus plug or might need a lobectomy of my left lobe. My lung function seems to be dropping also...20% down from this time last year. I am praying that they find something wrong in the bronchoscopy as I am on flufloxacillin all my life which aint working for me even though lab says it is the only thing that will kill the Staph.A. You are not alone, I am in a very similar position. Although I would push for other treatments as she is so young. How is her lung function? Is it stable? Sorry for the long post I dunno if I answered any of your questions although I hope you feel you aint alone when you finish reading my post as I felt that way reading your post. Kind of a nice feeling to know you aint alone even though it aint in the best of circumstances.

Thanks for reading the waffle.

 

[anon22]

Melissa,

You are not alone by no means...I am going through VERY similar times as your Claire. I am 19 years old. Have cultured Pseudo since I was 15 and had it for 2 years. Then I eradicated the pseudo. I constantly grow Staph.A, my mucous is green the whole time. Even after Iv's it is green, I was in hospital 6 times this year which is in line to my 8 times through 2006. Hopefully I dont beat 8 this year. I came out of hospital last week not that well. The doctors themselves have given up a little hope. I have been seen by one of the top CF pulmonologist in this country. I am going to see another great doctor in a few weeks to have a bronchoscopy as they think I whether have a mucus plug or might need a lobectomy of my left lobe. My lung function seems to be dropping also...20% down from this time last year. I am praying that they find something wrong in the bronchoscopy as I am on flufloxacillin all my life which aint working for me even though lab says it is the only thing that will kill the Staph.A. You are not alone, I am in a very similar position. Although I would push for other treatments as she is so young. How is her lung function? Is it stable? Sorry for the long post I dunno if I answered any of your questions although I hope you feel you aint alone when you finish reading my post as I felt that way reading your post. Kind of a nice feeling to know you aint alone even though it aint in the best of circumstances.

Thanks for reading the waffle.

 

[Beaz]

Hi Clairesmom!
I have a ten year old son with whom we have had a very similar experience, to wit, G-tube, Nissan, Staph, Pseudomonas, Stenotroph, Aspergillus, sinus surgery x 2 and the dreaded MRSA! The latter seems to have caused the most intractable problems for the last two years but we may (at last!!!) be seeing some light at the end of the tunnel (other than the oncoming train...).
Vanco. helped temporarily, but it's only IV. Zyvox (Linezolid) works like a charm, but can only be used for two weeks at a time. Clindamycin was as effective as water- a total bust. About three weeks ago we started him on Doxycycline, which piggybacked onto an ongoing course of Itraconazol and alternating day low dose steriod and he has been better than he's been in two years!
This whole long story is to encourage you to keep trying different things and different combinations. Things that appear ineffective in the lab can work in your kid and visa versa. We have also bugged our CF doc about at least researching some other drugs used in Europe for MRSA eradication, Rifampin and Fusidic Acid.
Don't give up. Don't take no for an answer. Keep asking your doc and anyone else whose ear you can bend at clinic. Try to find out if anyone at your clinic is studying MRSA. Try not to get too discouraged-that's easy to say, huh?
Good luck and keep us posted how she's doing.

 

[Beaz]

Hi Clairesmom!
I have a ten year old son with whom we have had a very similar experience, to wit, G-tube, Nissan, Staph, Pseudomonas, Stenotroph, Aspergillus, sinus surgery x 2 and the dreaded MRSA! The latter seems to have caused the most intractable problems for the last two years but we may (at last!!!) be seeing some light at the end of the tunnel (other than the oncoming train...).
Vanco. helped temporarily, but it's only IV. Zyvox (Linezolid) works like a charm, but can only be used for two weeks at a time. Clindamycin was as effective as water- a total bust. About three weeks ago we started him on Doxycycline, which piggybacked onto an ongoing course of Itraconazol and alternating day low dose steriod and he has been better than he's been in two years!
This whole long story is to encourage you to keep trying different things and different combinations. Things that appear ineffective in the lab can work in your kid and visa versa. We have also bugged our CF doc about at least researching some other drugs used in Europe for MRSA eradication, Rifampin and Fusidic Acid.
Don't give up. Don't take no for an answer. Keep asking your doc and anyone else whose ear you can bend at clinic. Try to find out if anyone at your clinic is studying MRSA. Try not to get too discouraged-that's easy to say, huh?
Good luck and keep us posted how she's doing.

 

[Beaz]

Hi Clairesmom!
I have a ten year old son with whom we have had a very similar experience, to wit, G-tube, Nissan, Staph, Pseudomonas, Stenotroph, Aspergillus, sinus surgery x 2 and the dreaded MRSA! The latter seems to have caused the most intractable problems for the last two years but we may (at last!!!) be seeing some light at the end of the tunnel (other than the oncoming train...).
Vanco. helped temporarily, but it's only IV. Zyvox (Linezolid) works like a charm, but can only be used for two weeks at a time. Clindamycin was as effective as water- a total bust. About three weeks ago we started him on Doxycycline, which piggybacked onto an ongoing course of Itraconazol and alternating day low dose steriod and he has been better than he's been in two years!
This whole long story is to encourage you to keep trying different things and different combinations. Things that appear ineffective in the lab can work in your kid and visa versa. We have also bugged our CF doc about at least researching some other drugs used in Europe for MRSA eradication, Rifampin and Fusidic Acid.
Don't give up. Don't take no for an answer. Keep asking your doc and anyone else whose ear you can bend at clinic. Try to find out if anyone at your clinic is studying MRSA. Try not to get too discouraged-that's easy to say, huh?
Good luck and keep us posted how she's doing.

 

[Beaz]

Hi Clairesmom!
I have a ten year old son with whom we have had a very similar experience, to wit, G-tube, Nissan, Staph, Pseudomonas, Stenotroph, Aspergillus, sinus surgery x 2 and the dreaded MRSA! The latter seems to have caused the most intractable problems for the last two years but we may (at last!!!) be seeing some light at the end of the tunnel (other than the oncoming train...).
Vanco. helped temporarily, but it's only IV. Zyvox (Linezolid) works like a charm, but can only be used for two weeks at a time. Clindamycin was as effective as water- a total bust. About three weeks ago we started him on Doxycycline, which piggybacked onto an ongoing course of Itraconazol and alternating day low dose steriod and he has been better than he's been in two years!
This whole long story is to encourage you to keep trying different things and different combinations. Things that appear ineffective in the lab can work in your kid and visa versa. We have also bugged our CF doc about at least researching some other drugs used in Europe for MRSA eradication, Rifampin and Fusidic Acid.
Don't give up. Don't take no for an answer. Keep asking your doc and anyone else whose ear you can bend at clinic. Try to find out if anyone at your clinic is studying MRSA. Try not to get too discouraged-that's easy to say, huh?
Good luck and keep us posted how she's doing.

 

[Beaz]

Hi Clairesmom!
I have a ten year old son with whom we have had a very similar experience, to wit, G-tube, Nissan, Staph, Pseudomonas, Stenotroph, Aspergillus, sinus surgery x 2 and the dreaded MRSA! The latter seems to have caused the most intractable problems for the last two years but we may (at last!!!) be seeing some light at the end of the tunnel (other than the oncoming train...).
Vanco. helped temporarily, but it's only IV. Zyvox (Linezolid) works like a charm, but can only be used for two weeks at a time. Clindamycin was as effective as water- a total bust. About three weeks ago we started him on Doxycycline, which piggybacked onto an ongoing course of Itraconazol and alternating day low dose steriod and he has been better than he's been in two years!
This whole long story is to encourage you to keep trying different things and different combinations. Things that appear ineffective in the lab can work in your kid and visa versa. We have also bugged our CF doc about at least researching some other drugs used in Europe for MRSA eradication, Rifampin and Fusidic Acid.
Don't give up. Don't take no for an answer. Keep asking your doc and anyone else whose ear you can bend at clinic. Try to find out if anyone at your clinic is studying MRSA. Try not to get too discouraged-that's easy to say, huh?
Good luck and keep us posted how she's doing.