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Why such variation in med's and treatments
- Thread starter creation301
- Start date
Our feeling is to make sure anything that is recommended is truly needed. I want to know why they recommend something and what the potential down sides are. I want to know if there is a natural way to achieve the same results. Then I want to try that first. So for example, if I keep general inflammation down by using an anti-inflammatory diet, using probiotics, supplements like GSH ect...will he need the albuterol they recommend. Perhaps yes, but perhaps no. Will he require pulmozyme if he does GSH? Perhaps yes, but perhaps no. I just feel the natural approach is not even given a chance or it is looked at as a "nice thing to do" but not a serious approach to health. This has been our experience in talking with our CF doctors (whom I am happy to say are more tentative).
When it comes to illnesses, I want my son's own immune system to have a chance at defending itself before antibiotics are just thrown our way "just in case." I believe in his ability to be healthy and our ability to research and find solutions to issues like inflammation and gut health that most doctors won't even know about. I give myself permission to look at his health from a holistic perspective, not from just the traditional symptom=drug approach. They all have their role, their place in health, but prevention and protection of health comes in many forms, many of which traditional medicine is not educated about. It is then my job as his protector to look at things from all angles and then make the best choices I can. They do not all work the way I hope...but many do their job better than expected.
We all have choices to make for our children and long-term drug use is always something to think about. It is all an experiment regardless of if the solution to an issue comes from nature or from a drug company or some mix of both. CF has no concrete solutions and each person goes through CF differently. No blanket approach just the one that works for your child.
When it comes to illnesses, I want my son's own immune system to have a chance at defending itself before antibiotics are just thrown our way "just in case." I believe in his ability to be healthy and our ability to research and find solutions to issues like inflammation and gut health that most doctors won't even know about. I give myself permission to look at his health from a holistic perspective, not from just the traditional symptom=drug approach. They all have their role, their place in health, but prevention and protection of health comes in many forms, many of which traditional medicine is not educated about. It is then my job as his protector to look at things from all angles and then make the best choices I can. They do not all work the way I hope...but many do their job better than expected.
We all have choices to make for our children and long-term drug use is always something to think about. It is all an experiment regardless of if the solution to an issue comes from nature or from a drug company or some mix of both. CF has no concrete solutions and each person goes through CF differently. No blanket approach just the one that works for your child.
Our feeling is to make sure anything that is recommended is truly needed. I want to know why they recommend something and what the potential down sides are. I want to know if there is a natural way to achieve the same results. Then I want to try that first. So for example, if I keep general inflammation down by using an anti-inflammatory diet, using probiotics, supplements like GSH ect...will he need the albuterol they recommend. Perhaps yes, but perhaps no. Will he require pulmozyme if he does GSH? Perhaps yes, but perhaps no. I just feel the natural approach is not even given a chance or it is looked at as a "nice thing to do" but not a serious approach to health. This has been our experience in talking with our CF doctors (whom I am happy to say are more tentative).
When it comes to illnesses, I want my son's own immune system to have a chance at defending itself before antibiotics are just thrown our way "just in case." I believe in his ability to be healthy and our ability to research and find solutions to issues like inflammation and gut health that most doctors won't even know about. I give myself permission to look at his health from a holistic perspective, not from just the traditional symptom=drug approach. They all have their role, their place in health, but prevention and protection of health comes in many forms, many of which traditional medicine is not educated about. It is then my job as his protector to look at things from all angles and then make the best choices I can. They do not all work the way I hope...but many do their job better than expected.
We all have choices to make for our children and long-term drug use is always something to think about. It is all an experiment regardless of if the solution to an issue comes from nature or from a drug company or some mix of both. CF has no concrete solutions and each person goes through CF differently. No blanket approach just the one that works for your child.
When it comes to illnesses, I want my son's own immune system to have a chance at defending itself before antibiotics are just thrown our way "just in case." I believe in his ability to be healthy and our ability to research and find solutions to issues like inflammation and gut health that most doctors won't even know about. I give myself permission to look at his health from a holistic perspective, not from just the traditional symptom=drug approach. They all have their role, their place in health, but prevention and protection of health comes in many forms, many of which traditional medicine is not educated about. It is then my job as his protector to look at things from all angles and then make the best choices I can. They do not all work the way I hope...but many do their job better than expected.
We all have choices to make for our children and long-term drug use is always something to think about. It is all an experiment regardless of if the solution to an issue comes from nature or from a drug company or some mix of both. CF has no concrete solutions and each person goes through CF differently. No blanket approach just the one that works for your child.
Our feeling is to make sure anything that is recommended is truly needed. I want to know why they recommend something and what the potential down sides are. I want to know if there is a natural way to achieve the same results. Then I want to try that first. So for example, if I keep general inflammation down by using an anti-inflammatory diet, using probiotics, supplements like GSH ect...will he need the albuterol they recommend. Perhaps yes, but perhaps no. Will he require pulmozyme if he does GSH? Perhaps yes, but perhaps no. I just feel the natural approach is not even given a chance or it is looked at as a "nice thing to do" but not a serious approach to health. This has been our experience in talking with our CF doctors (whom I am happy to say are more tentative).
When it comes to illnesses, I want my son's own immune system to have a chance at defending itself before antibiotics are just thrown our way "just in case." I believe in his ability to be healthy and our ability to research and find solutions to issues like inflammation and gut health that most doctors won't even know about. I give myself permission to look at his health from a holistic perspective, not from just the traditional symptom=drug approach. They all have their role, their place in health, but prevention and protection of health comes in many forms, many of which traditional medicine is not educated about. It is then my job as his protector to look at things from all angles and then make the best choices I can. They do not all work the way I hope...but many do their job better than expected.
We all have choices to make for our children and long-term drug use is always something to think about. It is all an experiment regardless of if the solution to an issue comes from nature or from a drug company or some mix of both. CF has no concrete solutions and each person goes through CF differently. No blanket approach just the one that works for your child.
When it comes to illnesses, I want my son's own immune system to have a chance at defending itself before antibiotics are just thrown our way "just in case." I believe in his ability to be healthy and our ability to research and find solutions to issues like inflammation and gut health that most doctors won't even know about. I give myself permission to look at his health from a holistic perspective, not from just the traditional symptom=drug approach. They all have their role, their place in health, but prevention and protection of health comes in many forms, many of which traditional medicine is not educated about. It is then my job as his protector to look at things from all angles and then make the best choices I can. They do not all work the way I hope...but many do their job better than expected.
We all have choices to make for our children and long-term drug use is always something to think about. It is all an experiment regardless of if the solution to an issue comes from nature or from a drug company or some mix of both. CF has no concrete solutions and each person goes through CF differently. No blanket approach just the one that works for your child.
damiensmom
New member
My son has basically the same regiment.
3x xopenex
3x actigal
3x zantac
aquadek 2 ml
pulmazyme
3x cpt
also we have done 1 round of tobi. he has not cultured it again. he has also taken bactium. So I would say no it doesnt sound like to much. actigal for the liver, vitamins, and anti acid , and respitory meds . All are needed. It is alot for the kids but very needed. God Bless.
3x xopenex
3x actigal
3x zantac
aquadek 2 ml
pulmazyme
3x cpt
also we have done 1 round of tobi. he has not cultured it again. he has also taken bactium. So I would say no it doesnt sound like to much. actigal for the liver, vitamins, and anti acid , and respitory meds . All are needed. It is alot for the kids but very needed. God Bless.
damiensmom
New member
My son has basically the same regiment.
3x xopenex
3x actigal
3x zantac
aquadek 2 ml
pulmazyme
3x cpt
also we have done 1 round of tobi. he has not cultured it again. he has also taken bactium. So I would say no it doesnt sound like to much. actigal for the liver, vitamins, and anti acid , and respitory meds . All are needed. It is alot for the kids but very needed. God Bless.
3x xopenex
3x actigal
3x zantac
aquadek 2 ml
pulmazyme
3x cpt
also we have done 1 round of tobi. he has not cultured it again. he has also taken bactium. So I would say no it doesnt sound like to much. actigal for the liver, vitamins, and anti acid , and respitory meds . All are needed. It is alot for the kids but very needed. God Bless.
damiensmom
New member
My son has basically the same regiment.
3x xopenex
3x actigal
3x zantac
aquadek 2 ml
pulmazyme
3x cpt
also we have done 1 round of tobi. he has not cultured it again. he has also taken bactium. So I would say no it doesnt sound like to much. actigal for the liver, vitamins, and anti acid , and respitory meds . All are needed. It is alot for the kids but very needed. God Bless.
3x xopenex
3x actigal
3x zantac
aquadek 2 ml
pulmazyme
3x cpt
also we have done 1 round of tobi. he has not cultured it again. he has also taken bactium. So I would say no it doesnt sound like to much. actigal for the liver, vitamins, and anti acid , and respitory meds . All are needed. It is alot for the kids but very needed. God Bless.
damiensmom
New member
OOps I forgot flonase. ! x daily
damiensmom
New member
OOps I forgot flonase. ! x daily
damiensmom
New member
OOps I forgot flonase. ! x daily
DS's primary CF doctor is also an infectious disease specialist. DS is 3 1/2. His doctor is very proactive, stresses the importance of proper lung care, keeping infections at bay... Last month a parent of a 1 year old who goes to the local clinic said they just did cpt for the first time because DS was hospitalized with pneumonia and they still didn't prescribe nebs.
We do the vest/cpt 3 times a day with Duoneb (albuterol/atrovent) - bronciodialtors
Tobi nebs twice a day, every other month.
Pulmozyme once a day.
Oral meds are adeks -- 1 ml 2x a day
drop of vitamin E (400) and vitamin A (10000) in his carnation instant breakfast once a day
7.5 ml actigal 3 x a day
2.5 ml zithromax 1 day
5 ml Keflex 4 x day
1 tablet Vitamin K once a week
We do the vest/cpt 3 times a day with Duoneb (albuterol/atrovent) - bronciodialtors
Tobi nebs twice a day, every other month.
Pulmozyme once a day.
Oral meds are adeks -- 1 ml 2x a day
drop of vitamin E (400) and vitamin A (10000) in his carnation instant breakfast once a day
7.5 ml actigal 3 x a day
2.5 ml zithromax 1 day
5 ml Keflex 4 x day
1 tablet Vitamin K once a week
DS's primary CF doctor is also an infectious disease specialist. DS is 3 1/2. His doctor is very proactive, stresses the importance of proper lung care, keeping infections at bay... Last month a parent of a 1 year old who goes to the local clinic said they just did cpt for the first time because DS was hospitalized with pneumonia and they still didn't prescribe nebs.
We do the vest/cpt 3 times a day with Duoneb (albuterol/atrovent) - bronciodialtors
Tobi nebs twice a day, every other month.
Pulmozyme once a day.
Oral meds are adeks -- 1 ml 2x a day
drop of vitamin E (400) and vitamin A (10000) in his carnation instant breakfast once a day
7.5 ml actigal 3 x a day
2.5 ml zithromax 1 day
5 ml Keflex 4 x day
1 tablet Vitamin K once a week
We do the vest/cpt 3 times a day with Duoneb (albuterol/atrovent) - bronciodialtors
Tobi nebs twice a day, every other month.
Pulmozyme once a day.
Oral meds are adeks -- 1 ml 2x a day
drop of vitamin E (400) and vitamin A (10000) in his carnation instant breakfast once a day
7.5 ml actigal 3 x a day
2.5 ml zithromax 1 day
5 ml Keflex 4 x day
1 tablet Vitamin K once a week
DS's primary CF doctor is also an infectious disease specialist. DS is 3 1/2. His doctor is very proactive, stresses the importance of proper lung care, keeping infections at bay... Last month a parent of a 1 year old who goes to the local clinic said they just did cpt for the first time because DS was hospitalized with pneumonia and they still didn't prescribe nebs.
We do the vest/cpt 3 times a day with Duoneb (albuterol/atrovent) - bronciodialtors
Tobi nebs twice a day, every other month.
Pulmozyme once a day.
Oral meds are adeks -- 1 ml 2x a day
drop of vitamin E (400) and vitamin A (10000) in his carnation instant breakfast once a day
7.5 ml actigal 3 x a day
2.5 ml zithromax 1 day
5 ml Keflex 4 x day
1 tablet Vitamin K once a week
We do the vest/cpt 3 times a day with Duoneb (albuterol/atrovent) - bronciodialtors
Tobi nebs twice a day, every other month.
Pulmozyme once a day.
Oral meds are adeks -- 1 ml 2x a day
drop of vitamin E (400) and vitamin A (10000) in his carnation instant breakfast once a day
7.5 ml actigal 3 x a day
2.5 ml zithromax 1 day
5 ml Keflex 4 x day
1 tablet Vitamin K once a week
posts like liza's make my day <img src=""> <img src=""> <img src="">
I heard a story the other night from a family outside the US... the 1 year old is sick but they don't even know what the kid is colonized with because gov't won't do a sputum culture or bronchoscopy. Stories like that just make me want to die.
But I feel so happy when I hear stories like Liza's
I heard a story the other night from a family outside the US... the 1 year old is sick but they don't even know what the kid is colonized with because gov't won't do a sputum culture or bronchoscopy. Stories like that just make me want to die.
But I feel so happy when I hear stories like Liza's
posts like liza's make my day <img src=""> <img src=""> <img src="">
I heard a story the other night from a family outside the US... the 1 year old is sick but they don't even know what the kid is colonized with because gov't won't do a sputum culture or bronchoscopy. Stories like that just make me want to die.
But I feel so happy when I hear stories like Liza's
I heard a story the other night from a family outside the US... the 1 year old is sick but they don't even know what the kid is colonized with because gov't won't do a sputum culture or bronchoscopy. Stories like that just make me want to die.
But I feel so happy when I hear stories like Liza's
posts like liza's make my day <img src=""> <img src=""> <img src="">
I heard a story the other night from a family outside the US... the 1 year old is sick but they don't even know what the kid is colonized with because gov't won't do a sputum culture or bronchoscopy. Stories like that just make me want to die.
But I feel so happy when I hear stories like Liza's
I heard a story the other night from a family outside the US... the 1 year old is sick but they don't even know what the kid is colonized with because gov't won't do a sputum culture or bronchoscopy. Stories like that just make me want to die.
But I feel so happy when I hear stories like Liza's
chattyfamily
New member
Since we are so new to this, it is good to hear other people's routines. Right now Porter is doing 2 albuterol treatments and 2 CPT's a day. Vitamins and enzymes too. That is all though. Is there anything preventative that he should be on that I don't know about. If someone can give me some info on what to ask when we go to clinic on May 17th. I am reading about all of these medicines some kids are on and wondering if they have been prescribed because of a flare up or purely preventative. I am trying to be an advocate for my son, but I am so confused, I don't even know what to ask for.
He has cultured staph the past 2 visits. He just finished 2 weeks of Chephlex. He seems fine lung wise. I am not looking to have him on more medicine, but I would hate to miss something he COULD be on that would help him later on. Like I said, everything is so new, I don't know if our drs. are agressive or cautious. How would I know?
He has cultured staph the past 2 visits. He just finished 2 weeks of Chephlex. He seems fine lung wise. I am not looking to have him on more medicine, but I would hate to miss something he COULD be on that would help him later on. Like I said, everything is so new, I don't know if our drs. are agressive or cautious. How would I know?
chattyfamily
New member
Since we are so new to this, it is good to hear other people's routines. Right now Porter is doing 2 albuterol treatments and 2 CPT's a day. Vitamins and enzymes too. That is all though. Is there anything preventative that he should be on that I don't know about. If someone can give me some info on what to ask when we go to clinic on May 17th. I am reading about all of these medicines some kids are on and wondering if they have been prescribed because of a flare up or purely preventative. I am trying to be an advocate for my son, but I am so confused, I don't even know what to ask for.
He has cultured staph the past 2 visits. He just finished 2 weeks of Chephlex. He seems fine lung wise. I am not looking to have him on more medicine, but I would hate to miss something he COULD be on that would help him later on. Like I said, everything is so new, I don't know if our drs. are agressive or cautious. How would I know?
He has cultured staph the past 2 visits. He just finished 2 weeks of Chephlex. He seems fine lung wise. I am not looking to have him on more medicine, but I would hate to miss something he COULD be on that would help him later on. Like I said, everything is so new, I don't know if our drs. are agressive or cautious. How would I know?
chattyfamily
New member
Since we are so new to this, it is good to hear other people's routines. Right now Porter is doing 2 albuterol treatments and 2 CPT's a day. Vitamins and enzymes too. That is all though. Is there anything preventative that he should be on that I don't know about. If someone can give me some info on what to ask when we go to clinic on May 17th. I am reading about all of these medicines some kids are on and wondering if they have been prescribed because of a flare up or purely preventative. I am trying to be an advocate for my son, but I am so confused, I don't even know what to ask for.
He has cultured staph the past 2 visits. He just finished 2 weeks of Chephlex. He seems fine lung wise. I am not looking to have him on more medicine, but I would hate to miss something he COULD be on that would help him later on. Like I said, everything is so new, I don't know if our drs. are agressive or cautious. How would I know?
He has cultured staph the past 2 visits. He just finished 2 weeks of Chephlex. He seems fine lung wise. I am not looking to have him on more medicine, but I would hate to miss something he COULD be on that would help him later on. Like I said, everything is so new, I don't know if our drs. are agressive or cautious. How would I know?
What might give you a good perspective is reading Dr. Warwick's Letter to me (he's the head of the CF clinic whose patients live the longest).
Click on my blog, scroll down to the bottom to where it says "categories." Click "Warwick's Letter" next. It's a long read, but worth it. It's a great way to understand how this CF doc treats his patients so successfully.
Click on my blog, scroll down to the bottom to where it says "categories." Click "Warwick's Letter" next. It's a long read, but worth it. It's a great way to understand how this CF doc treats his patients so successfully.