Breathing Treatments?

kitomd21 · Nov 24, 2009

Deidre - I would strongly consider a CF accredited center, if you can. As an FYI, many CF doctors DO NOT treat staph unless there is sign of infection (e.g., increased cough). Staph actually carries a protective characteristic against pseudomonas. Perhaps your son's pulmonologist is aware of this fact. Trying to eradicate staph isn't necessarily a good thing....historically, these individuals are believed to culture PA earlier in life. This is not to say that your son won't develop a PA infection, regardless. However, it's something to consider. Also, the popular approach is to supplement salt. It's a given that CF individuals lose a lot of sodium by the simple fact that their CFTR protein doesn't function properly. Does your son's doctor abide by the CFF standards of weight to length percentage? There are different weight guidelines for a child with CF as opposed to one without CF.

There are many other things to consider with regard to seeing an accredited CF doctor (i.e., center). Not that all of them are great - in fact, there are definitely some substandard ones, but there are definitely guidelines a "regular" pulmonologist might not be aware of....

kitomd21 · Nov 24, 2009

Deidre - I would strongly consider a CF accredited center, if you can. As an FYI, many CF doctors DO NOT treat staph unless there is sign of infection (e.g., increased cough). Staph actually carries a protective characteristic against pseudomonas. Perhaps your son's pulmonologist is aware of this fact. Trying to eradicate staph isn't necessarily a good thing....historically, these individuals are believed to culture PA earlier in life. This is not to say that your son won't develop a PA infection, regardless. However, it's something to consider. Also, the popular approach is to supplement salt. It's a given that CF individuals lose a lot of sodium by the simple fact that their CFTR protein doesn't function properly. Does your son's doctor abide by the CFF standards of weight to length percentage? There are different weight guidelines for a child with CF as opposed to one without CF.

There are many other things to consider with regard to seeing an accredited CF doctor (i.e., center). Not that all of them are great - in fact, there are definitely some substandard ones, but there are definitely guidelines a "regular" pulmonologist might not be aware of....

kitomd21 · Nov 24, 2009

Deidre - I would strongly consider a CF accredited center, if you can. As an FYI, many CF doctors DO NOT treat staph unless there is sign of infection (e.g., increased cough). Staph actually carries a protective characteristic against pseudomonas. Perhaps your son's pulmonologist is aware of this fact. Trying to eradicate staph isn't necessarily a good thing....historically, these individuals are believed to culture PA earlier in life. This is not to say that your son won't develop a PA infection, regardless. However, it's something to consider. Also, the popular approach is to supplement salt. It's a given that CF individuals lose a lot of sodium by the simple fact that their CFTR protein doesn't function properly. Does your son's doctor abide by the CFF standards of weight to length percentage? There are different weight guidelines for a child with CF as opposed to one without CF.

There are many other things to consider with regard to seeing an accredited CF doctor (i.e., center). Not that all of them are great - in fact, there are definitely some substandard ones, but there are definitely guidelines a "regular" pulmonologist might not be aware of....

kitomd21 · Nov 24, 2009

Deidre - I would strongly consider a CF accredited center, if you can. As an FYI, many CF doctors DO NOT treat staph unless there is sign of infection (e.g., increased cough). Staph actually carries a protective characteristic against pseudomonas. Perhaps your son's pulmonologist is aware of this fact. Trying to eradicate staph isn't necessarily a good thing....historically, these individuals are believed to culture PA earlier in life. This is not to say that your son won't develop a PA infection, regardless. However, it's something to consider. Also, the popular approach is to supplement salt. It's a given that CF individuals lose a lot of sodium by the simple fact that their CFTR protein doesn't function properly. Does your son's doctor abide by the CFF standards of weight to length percentage? There are different weight guidelines for a child with CF as opposed to one without CF.

There are many other things to consider with regard to seeing an accredited CF doctor (i.e., center). Not that all of them are great - in fact, there are definitely some substandard ones, but there are definitely guidelines a "regular" pulmonologist might not be aware of....

kitomd21 · Nov 24, 2009

Deidre - I would strongly consider a CF accredited center, if you can. As an FYI, many CF doctors DO NOT treat staph unless there is sign of infection (e.g., increased cough). Staph actually carries a protective characteristic against pseudomonas. Perhaps your son's pulmonologist is aware of this fact. Trying to eradicate staph isn't necessarily a good thing....historically, these individuals are believed to culture PA earlier in life. This is not to say that your son won't develop a PA infection, regardless. However, it's something to consider. Also, the popular approach is to supplement salt. It's a given that CF individuals lose a lot of sodium by the simple fact that their CFTR protein doesn't function properly. Does your son's doctor abide by the CFF standards of weight to length percentage? There are different weight guidelines for a child with CF as opposed to one without CF.
 
 There are many other things to consider with regard to seeing an accredited CF doctor (i.e., center). Not that all of them are great - in fact, there are definitely some substandard ones, but there are definitely guidelines a "regular" pulmonologist might not be aware of....

petnurse · Nov 25, 2009

I agree. I think it would be a better idea to find a CF center. We see a pediatric pulmonologist atthe center, however we also see a nutritionist, physical therapist, and they have a psychologist. The nutritionist is CRUCIAL to a CF baby. Plus, if there are new treatments or trials, the CF center will know first. Good Luck!

petnurse · Nov 25, 2009

I agree. I think it would be a better idea to find a CF center. We see a pediatric pulmonologist atthe center, however we also see a nutritionist, physical therapist, and they have a psychologist. The nutritionist is CRUCIAL to a CF baby. Plus, if there are new treatments or trials, the CF center will know first. Good Luck!

petnurse · Nov 25, 2009

I agree. I think it would be a better idea to find a CF center. We see a pediatric pulmonologist atthe center, however we also see a nutritionist, physical therapist, and they have a psychologist. The nutritionist is CRUCIAL to a CF baby. Plus, if there are new treatments or trials, the CF center will know first. Good Luck!

petnurse · Nov 25, 2009

I agree. I think it would be a better idea to find a CF center. We see a pediatric pulmonologist atthe center, however we also see a nutritionist, physical therapist, and they have a psychologist. The nutritionist is CRUCIAL to a CF baby. Plus, if there are new treatments or trials, the CF center will know first. Good Luck!

petnurse · Nov 25, 2009

I agree. I think it would be a better idea to find a CF center. We see a pediatric pulmonologist atthe center, however we also see a nutritionist, physical therapist, and they have a psychologist. The nutritionist is CRUCIAL to a CF baby. Plus, if there are new treatments or trials, the CF center will know first. Good Luck!

hmw · Nov 25, 2009

Lyndsi~ I would think given all the colds/viruses he's had already that he might benefit from some kind of treatment along with his cpt to help open up his airways so he can better bring up whatever junk he has down there. I'd also talk to his dr about his sick plan- do you increase his cpt when he's congested or sick? It is often recommended to give cpt 3-4x/day when the kids are sick (along with whatever nebs are done with cpt to help open things up.)

Deidre~ I strongly agree with going to an accredited center as well... Often, centers have more than just one doctor, which can be quite beneficial. The doctors at our clinic conference weekly on all the patients being seen so we benefit from their collective wisdom, not just the thoughts of the one dr. we see when there for our visit.

I strongly believe that the support staff there is just as valuable too- the social worker has done so much for us through this first year post-dx, has wonderful programs for the kids as they grow in helping them cope with their condition and in helping them learn to take a role in caring for themselves (as well as in helping keep me sane!) The nutritionist specializes in the issues unique to CF & sees us at each visit- this is a really important area, as nutritional status/growth is proven to affect pulmonary health as they get older; there is a research nurse there that coordinates all the stuff involved w/ the patients taking part in clinical trials (which I hope we can take part in someday!) Then there is the nurse, RT, PT... visits take us 2 hours, sometimes more- but it is well worth it. I feel we are getting total-child care that is absolutely vital when dealing with a disease that affects the body in so many ways.

Our clinic doesn't consider staph to be 'normal' flora but we don't treat it either unless it's making Emily sick- Emily's drs told us exactly what Katie posted re. staph vs PA. There is also the concern for building resistance to abx.

hmw · Nov 25, 2009

Lyndsi~ I would think given all the colds/viruses he's had already that he might benefit from some kind of treatment along with his cpt to help open up his airways so he can better bring up whatever junk he has down there. I'd also talk to his dr about his sick plan- do you increase his cpt when he's congested or sick? It is often recommended to give cpt 3-4x/day when the kids are sick (along with whatever nebs are done with cpt to help open things up.)

Deidre~ I strongly agree with going to an accredited center as well... Often, centers have more than just one doctor, which can be quite beneficial. The doctors at our clinic conference weekly on all the patients being seen so we benefit from their collective wisdom, not just the thoughts of the one dr. we see when there for our visit.

I strongly believe that the support staff there is just as valuable too- the social worker has done so much for us through this first year post-dx, has wonderful programs for the kids as they grow in helping them cope with their condition and in helping them learn to take a role in caring for themselves (as well as in helping keep me sane!) The nutritionist specializes in the issues unique to CF & sees us at each visit- this is a really important area, as nutritional status/growth is proven to affect pulmonary health as they get older; there is a research nurse there that coordinates all the stuff involved w/ the patients taking part in clinical trials (which I hope we can take part in someday!) Then there is the nurse, RT, PT... visits take us 2 hours, sometimes more- but it is well worth it. I feel we are getting total-child care that is absolutely vital when dealing with a disease that affects the body in so many ways.

Our clinic doesn't consider staph to be 'normal' flora but we don't treat it either unless it's making Emily sick- Emily's drs told us exactly what Katie posted re. staph vs PA. There is also the concern for building resistance to abx.

hmw · Nov 25, 2009

Lyndsi~ I would think given all the colds/viruses he's had already that he might benefit from some kind of treatment along with his cpt to help open up his airways so he can better bring up whatever junk he has down there. I'd also talk to his dr about his sick plan- do you increase his cpt when he's congested or sick? It is often recommended to give cpt 3-4x/day when the kids are sick (along with whatever nebs are done with cpt to help open things up.)

Deidre~ I strongly agree with going to an accredited center as well... Often, centers have more than just one doctor, which can be quite beneficial. The doctors at our clinic conference weekly on all the patients being seen so we benefit from their collective wisdom, not just the thoughts of the one dr. we see when there for our visit.

I strongly believe that the support staff there is just as valuable too- the social worker has done so much for us through this first year post-dx, has wonderful programs for the kids as they grow in helping them cope with their condition and in helping them learn to take a role in caring for themselves (as well as in helping keep me sane!) The nutritionist specializes in the issues unique to CF & sees us at each visit- this is a really important area, as nutritional status/growth is proven to affect pulmonary health as they get older; there is a research nurse there that coordinates all the stuff involved w/ the patients taking part in clinical trials (which I hope we can take part in someday!) Then there is the nurse, RT, PT... visits take us 2 hours, sometimes more- but it is well worth it. I feel we are getting total-child care that is absolutely vital when dealing with a disease that affects the body in so many ways.

Our clinic doesn't consider staph to be 'normal' flora but we don't treat it either unless it's making Emily sick- Emily's drs told us exactly what Katie posted re. staph vs PA. There is also the concern for building resistance to abx.

hmw · Nov 25, 2009

Lyndsi~ I would think given all the colds/viruses he's had already that he might benefit from some kind of treatment along with his cpt to help open up his airways so he can better bring up whatever junk he has down there. I'd also talk to his dr about his sick plan- do you increase his cpt when he's congested or sick? It is often recommended to give cpt 3-4x/day when the kids are sick (along with whatever nebs are done with cpt to help open things up.)

Deidre~ I strongly agree with going to an accredited center as well... Often, centers have more than just one doctor, which can be quite beneficial. The doctors at our clinic conference weekly on all the patients being seen so we benefit from their collective wisdom, not just the thoughts of the one dr. we see when there for our visit.

I strongly believe that the support staff there is just as valuable too- the social worker has done so much for us through this first year post-dx, has wonderful programs for the kids as they grow in helping them cope with their condition and in helping them learn to take a role in caring for themselves (as well as in helping keep me sane!) The nutritionist specializes in the issues unique to CF & sees us at each visit- this is a really important area, as nutritional status/growth is proven to affect pulmonary health as they get older; there is a research nurse there that coordinates all the stuff involved w/ the patients taking part in clinical trials (which I hope we can take part in someday!) Then there is the nurse, RT, PT... visits take us 2 hours, sometimes more- but it is well worth it. I feel we are getting total-child care that is absolutely vital when dealing with a disease that affects the body in so many ways.

Our clinic doesn't consider staph to be 'normal' flora but we don't treat it either unless it's making Emily sick- Emily's drs told us exactly what Katie posted re. staph vs PA. There is also the concern for building resistance to abx.

hmw · Nov 25, 2009

Lyndsi~ I would think given all the colds/viruses he's had already that he might benefit from some kind of treatment along with his cpt to help open up his airways so he can better bring up whatever junk he has down there. I'd also talk to his dr about his sick plan- do you increase his cpt when he's congested or sick? It is often recommended to give cpt 3-4x/day when the kids are sick (along with whatever nebs are done with cpt to help open things up.)
 
 Deidre~ I strongly agree with going to an accredited center as well... Often, centers have more than just one doctor, which can be quite beneficial. The doctors at our clinic conference weekly on all the patients being seen so we benefit from their collective wisdom, not just the thoughts of the one dr. we see when there for our visit.
 
 I strongly believe that the support staff there is just as valuable too- the social worker has done so much for us through this first year post-dx, has wonderful programs for the kids as they grow in helping them cope with their condition and in helping them learn to take a role in caring for themselves (as well as in helping keep me sane!) The nutritionist specializes in the issues unique to CF & sees us at each visit- this is a really important area, as nutritional status/growth is proven to affect pulmonary health as they get older; there is a research nurse there that coordinates all the stuff involved w/ the patients taking part in clinical trials (which I hope we can take part in someday!) Then there is the nurse, RT, PT... visits take us 2 hours, sometimes more- but it is well worth it. I feel we are getting total-child care that is absolutely vital when dealing with a disease that affects the body in so many ways.
 
 Our clinic doesn't consider staph to be 'normal' flora but we don't treat it either unless it's making Emily sick- Emily's drs told us exactly what Katie posted re. staph vs PA. There is also the concern for building resistance to abx.

k8sbigfan · Nov 25, 2009

My daughter was dx'd @ 6 weeks old. We started things right away....enzymes,Zantac, Vitamax. We also started chest PT (clapping) and Albuterol nebulizer treatments 2 to 3x per day. Its important to be really proactive and aggressive about lung hygeine. Maintain it now and it'll (hopefully) be better for the future. When my daughter was 5 months old, I did discontinue the Albuterol and switched her to inhaled GSH in her nebulizers. For her, we see better results using GSH than we did using the Albuterol.
Discuss with your doc about nebulizer treatments.

Also, KK is healthy, 1 ear infection @ 9months. She's now 2yo (terible 2's!!)
You are your child's BEST ADVOCATE!!

k8sbigfan · Nov 25, 2009

My daughter was dx'd @ 6 weeks old. We started things right away....enzymes,Zantac, Vitamax. We also started chest PT (clapping) and Albuterol nebulizer treatments 2 to 3x per day. Its important to be really proactive and aggressive about lung hygeine. Maintain it now and it'll (hopefully) be better for the future. When my daughter was 5 months old, I did discontinue the Albuterol and switched her to inhaled GSH in her nebulizers. For her, we see better results using GSH than we did using the Albuterol.
Discuss with your doc about nebulizer treatments.

Also, KK is healthy, 1 ear infection @ 9months. She's now 2yo (terible 2's!!)
You are your child's BEST ADVOCATE!!

k8sbigfan · Nov 25, 2009

My daughter was dx'd @ 6 weeks old. We started things right away....enzymes,Zantac, Vitamax. We also started chest PT (clapping) and Albuterol nebulizer treatments 2 to 3x per day. Its important to be really proactive and aggressive about lung hygeine. Maintain it now and it'll (hopefully) be better for the future. When my daughter was 5 months old, I did discontinue the Albuterol and switched her to inhaled GSH in her nebulizers. For her, we see better results using GSH than we did using the Albuterol.
Discuss with your doc about nebulizer treatments.

Also, KK is healthy, 1 ear infection @ 9months. She's now 2yo (terible 2's!!)
You are your child's BEST ADVOCATE!!

k8sbigfan · Nov 25, 2009

My daughter was dx'd @ 6 weeks old. We started things right away....enzymes,Zantac, Vitamax. We also started chest PT (clapping) and Albuterol nebulizer treatments 2 to 3x per day. Its important to be really proactive and aggressive about lung hygeine. Maintain it now and it'll (hopefully) be better for the future. When my daughter was 5 months old, I did discontinue the Albuterol and switched her to inhaled GSH in her nebulizers. For her, we see better results using GSH than we did using the Albuterol.
Discuss with your doc about nebulizer treatments.

Also, KK is healthy, 1 ear infection @ 9months. She's now 2yo (terible 2's!!)
You are your child's BEST ADVOCATE!!

k8sbigfan · Nov 25, 2009

My daughter was dx'd @ 6 weeks old. We started things right away....enzymes,Zantac, Vitamax. We also started chest PT (clapping) and Albuterol nebulizer treatments 2 to 3x per day. Its important to be really proactive and aggressive about lung hygeine. Maintain it now and it'll (hopefully) be better for the future. When my daughter was 5 months old, I did discontinue the Albuterol and switched her to inhaled GSH in her nebulizers. For her, we see better results using GSH than we did using the Albuterol.
 Discuss with your doc about nebulizer treatments.
 
 Also, KK is healthy, 1 ear infection @ 9months. She's now 2yo (terible 2's!!)
 You are your child's BEST ADVOCATE!!

Breathing Treatments?

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