My 10 yr old is having a horrible year..

C

ClairesMom

Guest
My 10 year old daughter has had the worst year of her life so far. I am really at my wits end and hate to see her struggling so much. She's been in the hospital every other month w/ the same symptoms..green mucous, coughing, some fevers, no appetite, etc...the only thing they treat is the MRSA. In year past, she would go in for these same symptoms about 3 times a year. Last stay they did a bronch to test for any microbacteria as well as a PH Probe to test for more reflux, even though she has a Nissen. Much to our chagrin, everything came back negative so they just let us out saying "this is just the progression of the disease". We are having a hard time believing they haven't missed something. Maybe we're in denial?? She gets out of the hospital and then sometimes even a week later she's coughing a lot again. I know all cases are very different, but could this just be the beginning of the "hard times"? Anyone out there going through this? I have seen a few CF'ers on this site that had transplants in their 20's...did you start to pretty much "stay sick" the last few years before the tx? I would love any feedback. THANKS SO MUCH!

Melissa
Claire's Mom, 10 year old w/ CF
 
C

ClairesMom

Guest
My 10 year old daughter has had the worst year of her life so far. I am really at my wits end and hate to see her struggling so much. She's been in the hospital every other month w/ the same symptoms..green mucous, coughing, some fevers, no appetite, etc...the only thing they treat is the MRSA. In year past, she would go in for these same symptoms about 3 times a year. Last stay they did a bronch to test for any microbacteria as well as a PH Probe to test for more reflux, even though she has a Nissen. Much to our chagrin, everything came back negative so they just let us out saying "this is just the progression of the disease". We are having a hard time believing they haven't missed something. Maybe we're in denial?? She gets out of the hospital and then sometimes even a week later she's coughing a lot again. I know all cases are very different, but could this just be the beginning of the "hard times"? Anyone out there going through this? I have seen a few CF'ers on this site that had transplants in their 20's...did you start to pretty much "stay sick" the last few years before the tx? I would love any feedback. THANKS SO MUCH!

Melissa
Claire's Mom, 10 year old w/ CF
 
C

ClairesMom

Guest
My 10 year old daughter has had the worst year of her life so far. I am really at my wits end and hate to see her struggling so much. She's been in the hospital every other month w/ the same symptoms..green mucous, coughing, some fevers, no appetite, etc...the only thing they treat is the MRSA. In year past, she would go in for these same symptoms about 3 times a year. Last stay they did a bronch to test for any microbacteria as well as a PH Probe to test for more reflux, even though she has a Nissen. Much to our chagrin, everything came back negative so they just let us out saying "this is just the progression of the disease". We are having a hard time believing they haven't missed something. Maybe we're in denial?? She gets out of the hospital and then sometimes even a week later she's coughing a lot again. I know all cases are very different, but could this just be the beginning of the "hard times"? Anyone out there going through this? I have seen a few CF'ers on this site that had transplants in their 20's...did you start to pretty much "stay sick" the last few years before the tx? I would love any feedback. THANKS SO MUCH!

Melissa
Claire's Mom, 10 year old w/ CF
 
C

ClairesMom

Guest
My 10 year old daughter has had the worst year of her life so far. I am really at my wits end and hate to see her struggling so much. She's been in the hospital every other month w/ the same symptoms..green mucous, coughing, some fevers, no appetite, etc...the only thing they treat is the MRSA. In year past, she would go in for these same symptoms about 3 times a year. Last stay they did a bronch to test for any microbacteria as well as a PH Probe to test for more reflux, even though she has a Nissen. Much to our chagrin, everything came back negative so they just let us out saying "this is just the progression of the disease". We are having a hard time believing they haven't missed something. Maybe we're in denial?? She gets out of the hospital and then sometimes even a week later she's coughing a lot again. I know all cases are very different, but could this just be the beginning of the "hard times"? Anyone out there going through this? I have seen a few CF'ers on this site that had transplants in their 20's...did you start to pretty much "stay sick" the last few years before the tx? I would love any feedback. THANKS SO MUCH!

Melissa
Claire's Mom, 10 year old w/ CF
 
C

ClairesMom

Guest
My 10 year old daughter has had the worst year of her life so far. I am really at my wits end and hate to see her struggling so much. She's been in the hospital every other month w/ the same symptoms..green mucous, coughing, some fevers, no appetite, etc...the only thing they treat is the MRSA. In year past, she would go in for these same symptoms about 3 times a year. Last stay they did a bronch to test for any microbacteria as well as a PH Probe to test for more reflux, even though she has a Nissen. Much to our chagrin, everything came back negative so they just let us out saying "this is just the progression of the disease". We are having a hard time believing they haven't missed something. Maybe we're in denial?? She gets out of the hospital and then sometimes even a week later she's coughing a lot again. I know all cases are very different, but could this just be the beginning of the "hard times"? Anyone out there going through this? I have seen a few CF'ers on this site that had transplants in their 20's...did you start to pretty much "stay sick" the last few years before the tx? I would love any feedback. THANKS SO MUCH!

Melissa
Claire's Mom, 10 year old w/ CF
 
T

TonyaH

Guest
Oh Melissa,
I'm so sorry you are going through all of this! I do not have much to offer you, but I did notice the mention of green mucus. Doesn't that signal pseudomonas? My son has recently been growing increased staph and his mucus has been yellow, which I hear is typical staph. I have always been told that green usually means pseudomonas. Have your doctors said anything about that?

Please keep us posted on your daughter. This must all be very difficult for her.
Tonya
 
T

TonyaH

Guest
Oh Melissa,
I'm so sorry you are going through all of this! I do not have much to offer you, but I did notice the mention of green mucus. Doesn't that signal pseudomonas? My son has recently been growing increased staph and his mucus has been yellow, which I hear is typical staph. I have always been told that green usually means pseudomonas. Have your doctors said anything about that?

Please keep us posted on your daughter. This must all be very difficult for her.
Tonya
 
T

TonyaH

Guest
Oh Melissa,
I'm so sorry you are going through all of this! I do not have much to offer you, but I did notice the mention of green mucus. Doesn't that signal pseudomonas? My son has recently been growing increased staph and his mucus has been yellow, which I hear is typical staph. I have always been told that green usually means pseudomonas. Have your doctors said anything about that?

Please keep us posted on your daughter. This must all be very difficult for her.
Tonya
 
T

TonyaH

Guest
Oh Melissa,
I'm so sorry you are going through all of this! I do not have much to offer you, but I did notice the mention of green mucus. Doesn't that signal pseudomonas? My son has recently been growing increased staph and his mucus has been yellow, which I hear is typical staph. I have always been told that green usually means pseudomonas. Have your doctors said anything about that?

Please keep us posted on your daughter. This must all be very difficult for her.
Tonya
 
T

TonyaH

Guest
Oh Melissa,
I'm so sorry you are going through all of this! I do not have much to offer you, but I did notice the mention of green mucus. Doesn't that signal pseudomonas? My son has recently been growing increased staph and his mucus has been yellow, which I hear is typical staph. I have always been told that green usually means pseudomonas. Have your doctors said anything about that?

Please keep us posted on your daughter. This must all be very difficult for her.
Tonya
 
T

TonyaH

Guest
Melissa,
Another question...does Claire see a CF care center, or a regalar pulmonologist? If you are not currently at a CFF accredited care center, I would suggest you visit one in your area for a second oppinion. I don't think "It's just the progression of the disease." is a comment an accredited center would make. Protocol from the CFF nowadays is to eradicate everything as soon as possible to keep those lungs clear.
Best of Luck,
Tonya
 
T

TonyaH

Guest
Melissa,
Another question...does Claire see a CF care center, or a regalar pulmonologist? If you are not currently at a CFF accredited care center, I would suggest you visit one in your area for a second oppinion. I don't think "It's just the progression of the disease." is a comment an accredited center would make. Protocol from the CFF nowadays is to eradicate everything as soon as possible to keep those lungs clear.
Best of Luck,
Tonya
 
T

TonyaH

Guest
Melissa,
Another question...does Claire see a CF care center, or a regalar pulmonologist? If you are not currently at a CFF accredited care center, I would suggest you visit one in your area for a second oppinion. I don't think "It's just the progression of the disease." is a comment an accredited center would make. Protocol from the CFF nowadays is to eradicate everything as soon as possible to keep those lungs clear.
Best of Luck,
Tonya
 
T

TonyaH

Guest
Melissa,
Another question...does Claire see a CF care center, or a regalar pulmonologist? If you are not currently at a CFF accredited care center, I would suggest you visit one in your area for a second oppinion. I don't think "It's just the progression of the disease." is a comment an accredited center would make. Protocol from the CFF nowadays is to eradicate everything as soon as possible to keep those lungs clear.
Best of Luck,
Tonya
 
T

TonyaH

Guest
Melissa,
Another question...does Claire see a CF care center, or a regalar pulmonologist? If you are not currently at a CFF accredited care center, I would suggest you visit one in your area for a second oppinion. I don't think "It's just the progression of the disease." is a comment an accredited center would make. Protocol from the CFF nowadays is to eradicate everything as soon as possible to keep those lungs clear.
Best of Luck,
Tonya
 
S

sdelorenzo

Guest
Sorry to hear about all that Claire has been going through. I could see our cf center saying "it is just the progression of the disease." What is your daughter's IGE levels? My nephew has been having a tough time in the past two months and his parents were just told that he has had aspergillus for quite a while now but they didn't know that. He gets fevers as well. Has your daughter started hypteronic saline a yr or so ago? My daughter has had a tough time this past yr as well. A cf mom on another site mentioned that she thought based on a few research articles that those who just culture staph (like my kids and nephew) might have some problems with hs due to the fact that staph grows in hypertonic conditions. My daughter had almost no problems with her lungs until she started hs. I have been wondering if hs was causing her inflammation, so this idea that staph growth in hs has me wondering. Just an idea....
Sharon, mom of Sophia, 6 and Jack, 4 both with cf, aunt to Joseph, 10 with cf
 
S

sdelorenzo

Guest
Sorry to hear about all that Claire has been going through. I could see our cf center saying "it is just the progression of the disease." What is your daughter's IGE levels? My nephew has been having a tough time in the past two months and his parents were just told that he has had aspergillus for quite a while now but they didn't know that. He gets fevers as well. Has your daughter started hypteronic saline a yr or so ago? My daughter has had a tough time this past yr as well. A cf mom on another site mentioned that she thought based on a few research articles that those who just culture staph (like my kids and nephew) might have some problems with hs due to the fact that staph grows in hypertonic conditions. My daughter had almost no problems with her lungs until she started hs. I have been wondering if hs was causing her inflammation, so this idea that staph growth in hs has me wondering. Just an idea....
Sharon, mom of Sophia, 6 and Jack, 4 both with cf, aunt to Joseph, 10 with cf
 
S

sdelorenzo

Guest
Sorry to hear about all that Claire has been going through. I could see our cf center saying "it is just the progression of the disease." What is your daughter's IGE levels? My nephew has been having a tough time in the past two months and his parents were just told that he has had aspergillus for quite a while now but they didn't know that. He gets fevers as well. Has your daughter started hypteronic saline a yr or so ago? My daughter has had a tough time this past yr as well. A cf mom on another site mentioned that she thought based on a few research articles that those who just culture staph (like my kids and nephew) might have some problems with hs due to the fact that staph grows in hypertonic conditions. My daughter had almost no problems with her lungs until she started hs. I have been wondering if hs was causing her inflammation, so this idea that staph growth in hs has me wondering. Just an idea....
Sharon, mom of Sophia, 6 and Jack, 4 both with cf, aunt to Joseph, 10 with cf
 
S

sdelorenzo

Guest
Sorry to hear about all that Claire has been going through. I could see our cf center saying "it is just the progression of the disease." What is your daughter's IGE levels? My nephew has been having a tough time in the past two months and his parents were just told that he has had aspergillus for quite a while now but they didn't know that. He gets fevers as well. Has your daughter started hypteronic saline a yr or so ago? My daughter has had a tough time this past yr as well. A cf mom on another site mentioned that she thought based on a few research articles that those who just culture staph (like my kids and nephew) might have some problems with hs due to the fact that staph grows in hypertonic conditions. My daughter had almost no problems with her lungs until she started hs. I have been wondering if hs was causing her inflammation, so this idea that staph growth in hs has me wondering. Just an idea....
Sharon, mom of Sophia, 6 and Jack, 4 both with cf, aunt to Joseph, 10 with cf
 
S

sdelorenzo

Guest
Sorry to hear about all that Claire has been going through. I could see our cf center saying "it is just the progression of the disease." What is your daughter's IGE levels? My nephew has been having a tough time in the past two months and his parents were just told that he has had aspergillus for quite a while now but they didn't know that. He gets fevers as well. Has your daughter started hypteronic saline a yr or so ago? My daughter has had a tough time this past yr as well. A cf mom on another site mentioned that she thought based on a few research articles that those who just culture staph (like my kids and nephew) might have some problems with hs due to the fact that staph grows in hypertonic conditions. My daughter had almost no problems with her lungs until she started hs. I have been wondering if hs was causing her inflammation, so this idea that staph growth in hs has me wondering. Just an idea....
Sharon, mom of Sophia, 6 and Jack, 4 both with cf, aunt to Joseph, 10 with cf
 
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