Guest guest Posted November 17, 2002 Report Share Posted November 17, 2002 If CPT was pointless the the doctors would not have us doing it 2 to 3 times daily. There are many varying degrees of illness in CF. Where we have all dealt with it, and all have opinions, your doctor knows best. If you have concerns by all means ask you doctor for alternatives. But dont expect what works for someone else to always work for you. Just think, if you feel guilty doing what is required to keep her healthy, how would you feel if you stopped and her lungs were damaged. I was told with each infection brings scarring. These areas dont become " un-scarred " . So these areas become useless. Where I am sure all of the advice is well ment, on every CF group they advise not changing or stopping any form of treatment without asking your doctor. So until you get a chance to see the doctor and address your concerns, hang in there. Last night as my 18 mo. old attempted to kick out my teeth for daring to take her out of the tub before she was ready, I thought of you. I wondered how the evening had gone for you. I checked out your little angel in the photo album a few days ago, she is so precious! Who would of thought she is so spunky!! I hope the doc has some answers for you. Until then, remember you are doing it because you love her...all will be well. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2002 Report Share Posted November 17, 2002 ---Hi Shanna, Just my two cents! For the most part my daughter is not productive with CPT unless she has an infection. My understanding is that you do the CPT for maintenance to keep them clear. Maintenance CPT we do once a day and when she has an infection, cold etc. I double up on it and I find that 2X a day is the most mine will tolerate and that is where I draw the line as well. Hope this helps. J. In cfparents@y..., Chaos Angel wrote: > So pretty much, all of this CPT is pointless if she's not actually sick? (She's come down with something right now...me too for that matter...grrr...my head feels like a bowling ball.) The docs told me we needed to do it 2x-3x per day, more if she's sick. Even when she had the small lung infection in the hospital, she didn't cough up much. I just don't get it...how's any of this supposed to help her? > > Triana didn't like to be upside down before she was dx'd. We can't figure out why she doesn't like it... > > > > Shanna > mom of Triana, age 2 wcf > > > Re: Re: Battle Royal > > > Hi Shanna, > > >>Ok, so how do you get the stuff to get out of her lungs with the balls?<< > > What stuff? In your intro you wrote that Triana doesn't cough and doesn't > have other kinds of lung involvement. Your child has been without CPT for > two years prior to the dx. So if you think that there is crud in Triana's > lung and CPT is the only way to get it out, then it's very surprising that > she had no lung problems before the dx. > > But if Triana doesn't like to be upside down and feeling unstable, a physio > ball might not be okay for her. On the other hand, when she is beaten > everytime she is upside down, I understand why she doesn't like it. > > Hope your doc comes up with a few ideas how to handle the problem. I would > mention the point that Triana hasn't had any lung involvement so far. > > > Peace > Torsten, dad of Fiona 5wcf > e-mail: torstenkrafft@w... > > > PLEASE do not post religious emails to the list. > > > ------------------------------------------- > > > The opinions and information exchanged on this list should > IN NO WAY > be construed as medical advice. > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. > > -------------------------------------------------- > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2002 Report Share Posted November 17, 2002 ---Hi Shanna, Just my two cents! For the most part my daughter is not productive with CPT unless she has an infection. My understanding is that you do the CPT for maintenance to keep them clear. Maintenance CPT we do once a day and when she has an infection, cold etc. I double up on it and I find that 2X a day is the most mine will tolerate and that is where I draw the line as well. Hope this helps. J. In cfparents@y..., Chaos Angel wrote: > So pretty much, all of this CPT is pointless if she's not actually sick? (She's come down with something right now...me too for that matter...grrr...my head feels like a bowling ball.) The docs told me we needed to do it 2x-3x per day, more if she's sick. Even when she had the small lung infection in the hospital, she didn't cough up much. I just don't get it...how's any of this supposed to help her? > > Triana didn't like to be upside down before she was dx'd. We can't figure out why she doesn't like it... > > > > Shanna > mom of Triana, age 2 wcf > > > Re: Re: Battle Royal > > > Hi Shanna, > > >>Ok, so how do you get the stuff to get out of her lungs with the balls?<< > > What stuff? In your intro you wrote that Triana doesn't cough and doesn't > have other kinds of lung involvement. Your child has been without CPT for > two years prior to the dx. So if you think that there is crud in Triana's > lung and CPT is the only way to get it out, then it's very surprising that > she had no lung problems before the dx. > > But if Triana doesn't like to be upside down and feeling unstable, a physio > ball might not be okay for her. On the other hand, when she is beaten > everytime she is upside down, I understand why she doesn't like it. > > Hope your doc comes up with a few ideas how to handle the problem. I would > mention the point that Triana hasn't had any lung involvement so far. > > > Peace > Torsten, dad of Fiona 5wcf > e-mail: torstenkrafft@w... > > > PLEASE do not post religious emails to the list. > > > ------------------------------------------- > > > The opinions and information exchanged on this list should > IN NO WAY > be construed as medical advice. > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. > > -------------------------------------------------- > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2002 Report Share Posted November 17, 2002 ---Hi Shanna, Just my two cents! For the most part my daughter is not productive with CPT unless she has an infection. My understanding is that you do the CPT for maintenance to keep them clear. Maintenance CPT we do once a day and when she has an infection, cold etc. I double up on it and I find that 2X a day is the most mine will tolerate and that is where I draw the line as well. Hope this helps. J. In cfparents@y..., Chaos Angel wrote: > So pretty much, all of this CPT is pointless if she's not actually sick? (She's come down with something right now...me too for that matter...grrr...my head feels like a bowling ball.) The docs told me we needed to do it 2x-3x per day, more if she's sick. Even when she had the small lung infection in the hospital, she didn't cough up much. I just don't get it...how's any of this supposed to help her? > > Triana didn't like to be upside down before she was dx'd. We can't figure out why she doesn't like it... > > > > Shanna > mom of Triana, age 2 wcf > > > Re: Re: Battle Royal > > > Hi Shanna, > > >>Ok, so how do you get the stuff to get out of her lungs with the balls?<< > > What stuff? In your intro you wrote that Triana doesn't cough and doesn't > have other kinds of lung involvement. Your child has been without CPT for > two years prior to the dx. So if you think that there is crud in Triana's > lung and CPT is the only way to get it out, then it's very surprising that > she had no lung problems before the dx. > > But if Triana doesn't like to be upside down and feeling unstable, a physio > ball might not be okay for her. On the other hand, when she is beaten > everytime she is upside down, I understand why she doesn't like it. > > Hope your doc comes up with a few ideas how to handle the problem. I would > mention the point that Triana hasn't had any lung involvement so far. > > > Peace > Torsten, dad of Fiona 5wcf > e-mail: torstenkrafft@w... > > > PLEASE do not post religious emails to the list. > > > ------------------------------------------- > > > The opinions and information exchanged on this list should > IN NO WAY > be construed as medical advice. > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. > > -------------------------------------------------- > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2002 Report Share Posted November 17, 2002 Shanna and , Many years ago my mom told me that shortly after she married my dad, her mother took her aside and told her to my dad handle all the family finances -- paying the bills, tax returns, investments, etc. When my mom asked why, her mother (who has a masters degree and is a devout Catholic) told her that if the husband handles all the finances and anything should go wrong, then the blame could be solely placed at the feet of the man. For the first 23 years of their marriage, my mom worked as a nurse, and each month she would turn her meager paycheck over to my dad. He'd paid the bills that he could and stuff the rest in drawers when he ran out of money; he filed income tax returns and extensions; he slammed the phone down on debt collectors, and when he ran low on money he'd send my mom to one of us daughters asking to borrow our babysitting money to buy groceries. He had--still has--an ego big as all outdoors. Eventually, he started his own business--able to afford two Mercedes, built an indoor pool, went on a cruise, had a small staff of employees and a very good accountant. But he would listen to no one. And within a couple years when the Oklahoma oil bust hit, he was bankrupt. They sold whatever they could and moved -- unable to sell their home, they left it behind for the bank. Because my mother had listened to her mother's advice -- letting my father make all the financial decisions -- she said she could easily blame all their financial problems on him. Her hands were clean. And now that they had hit rock bottom and fate had borne out, my mother took over. She went back to nursing--something my father promised her she could quit when he finally made it big. Hospitals were desperate for nurses when this happened in 1986 (they still are). She was immediately hired at $60,000 a year with a $3,000 sign-on bonus, incredible health insurance and company-paid retirement. Each month she'd take $200 off the top to put into her own private savings account--she didn't tell my dad this account existed. Then she would write the checks to pay bills. She said it was HER turn to take over. She turned things around based upon her own instincts, knowledge and convictions. My dad was very humbled, he struggled to find work in his profession and when it finally came he was a changed man -- finally recognizing that the best work is teamwork. The moral to the story is that often when facing new, life-altering hurdles -- such as the diagnosis of a strange, intricate, chronic illness -- that's it is much easier to turn over all the decision-making to one person. Then, if anything goes wrong you are absolved from blame. The blame won't lie at your feet, you were only doing what doctors told you. Well, sadly you can't put all the decision-making on doctors. They are human and don't know everything. They don't follow your children around 24-hours a day. They don't know the individual make up of your child and your family situation. Doctors sometimes omit telling you things, often because they just don't think to bring it up. How many of you had doctors that told you about the Zithromax studies after the trials were completed? Some doctors do things as standard protocal because that's what someone else told them to do. Again, let someone else make all the decisions then if anything goes wrong, you lay the blame at someone elses feet. If I'd listened to the five different doctors who said nothing was wrong with my child, then who knows how long it would have continued before I finally read about CF and demanded a sweat test -- taking everyone of those doctors by surprise. If I'd put blind faith in doctors, then I would have stopped pursuing the reason for my son's sudden lung bleeds. But I persevered, found the cause, and stopped it. If I'd put blind faith in doctors, I wouldn't have pressured my son's doctor into putting him on daily Zithromax in April 1999, years before the CFF thought to undertake their own study. It was the persisting reports that some of us renegade parents were seeing dramatic effects due to Zithromax that helped propel the study that you benefit from today. If I'd put blind faith in doctors, then in the summer of 2001, my daughter would have been dismissed from the ER without having a CT scan. But I persevered and the scan confirmed my suspicion that she'd fractured her skull, which resulted in downgrading her condition and immediate transfer by ambulance to an out-of-town hospital. If I'd put blind faith in doctors who said magnesium deficiency isn't much a problem with people with CF, then my son's health would have continued deteriorating. Instead, within less than two months time -- following my instincts using only a special nutritious diet, mineral supplements and essential oils -- my son's health completely turned around and we killed off a bacteria and fungus that had suddenly invaded his lungs that HIS doctor had chosen not to treat. I agree that CPT is important. But I equally agree that doctors and parents must not ever assume a cookie-cutter approach to any chronic illness treatment. In a 2-year old that is producing little mucus, I believe there is more harm than good in forcing CPT twice a day, especially in a downward position that is likely scary to her. We all have some sort of phobia--my phobia is heights. If someone were to dangle me off a ladder saying it's for my own health, I'd say forget it; find another option. Yes it is important to jiggle loose the mucus; I am not disagreeing! But there are many people with CF who are well today using alternative airway clearnance methods. You CAN do the same for a 2-year old. When my son was first diagnosed, his pulmonary doctor said to do CPT twice a day. But no amount of pounding produced results. So I dropped it to a nightly session. BUT, this was something I monitored on a daily basis. During allergy season when sinus drainage affected his lungs, I would add a quickie morning session. This could easily be done with him standing up. I would stand behind him and he would raise his arms away from his body; I'd cup my hands and clap the sides of his ribcage. This usually produced a lot of coughing and he could easily spit out whatever he coughed up. I kept doing this until he didn't cough up anything else -- it would take no more than five minutes. But during times of severe CF flare ups he' get what I called a " faucet effect. " There would be so much over-production of mucus that as soon as I finished a session, within minutes I could easily have done another one. Those times are heartbreaking; you'd do anything to know how to turn off that faucet so your child will get better. It takes less effort when we put all our faith in doctors instead of learning for ourselves the many different medicines and treatments that exist in the world. Western medicine is not perfect, and indeed many things we see coming out of Western medicine have so many side-effects that it actually causes a downward spiral in health. I hate seeing that happen to our children. Years ago, my son and I were asked to judge two separate studies involving children (and later, teens) and their parents handle CF issues regarding meds and treatment disagreements and compliance. When I asked my son's doctor why we were picked as judges, not study subjects, he grinned and said, well it's because whatever you're doing is working. I know CF is progressive, but I know in most cases you can slow the progression. You have to first know basic things about the body -- you have to make it your business to learn about inflammation and how it starts and what causes it and how you can change it. It's more intricate than you think but easier to manage than you realize. But does your doctor share these things with you? Most doctors are pressed for time and it's just easier for them to say " Do as I say. " The doctor prescribes an antibiotic and most parents don't know whether that's even the right antibiotic or combination of antibiotics. And most parents go right on giving the antibiotics without doing the first thing to squelch the underlying inflammation. I know there are certain medicines my son has to take, just as I've learned there are certain things the doctors never look for until I bring it up! How maddening this is! They're supposed to be the doctors and one thing I have learned this past year is that most doctors are not even reading the research of their colleagues or demanding their patients (or parents) become more knowledgeable to help with the decision-making. Chronic illness is a lot more than just holding someone else's hand and sympathizing when the going gets rough. It's about being courageous enough to take back some of that 100% blind faith you put in your doctors and putting it in yourself. Kim Mom to (23 with asthma and CF) and (20 asthma, no CF) Hi Shanna, this all reminds me a lot of our experience with albuterol. After we had given it for one year to Fiona I found out that it is a short time acting bronchodilator. Since Fiona never had RAD or bronchoconstrictions of any kind I wondered why albuterol was prescribed. I asked the doc, whether she thinks that albuterol helps Fiona. She said " no " . I asked what will happen when we stop to use it. She said " nothing, but it's standard treatment for pwcf in our clinic " . We discontinued the albuterol the next day and our doc was right, nothing changed. I would ask the doc why it is necessary to do CPT at least two times a day. I think that the docs just cover their butt and couldn't care less about the side-effects of their orders. Peace Torsten, dad of Fiona 5wcf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2002 Report Share Posted November 17, 2002 Shanna and , Many years ago my mom told me that shortly after she married my dad, her mother took her aside and told her to my dad handle all the family finances -- paying the bills, tax returns, investments, etc. When my mom asked why, her mother (who has a masters degree and is a devout Catholic) told her that if the husband handles all the finances and anything should go wrong, then the blame could be solely placed at the feet of the man. For the first 23 years of their marriage, my mom worked as a nurse, and each month she would turn her meager paycheck over to my dad. He'd paid the bills that he could and stuff the rest in drawers when he ran out of money; he filed income tax returns and extensions; he slammed the phone down on debt collectors, and when he ran low on money he'd send my mom to one of us daughters asking to borrow our babysitting money to buy groceries. He had--still has--an ego big as all outdoors. Eventually, he started his own business--able to afford two Mercedes, built an indoor pool, went on a cruise, had a small staff of employees and a very good accountant. But he would listen to no one. And within a couple years when the Oklahoma oil bust hit, he was bankrupt. They sold whatever they could and moved -- unable to sell their home, they left it behind for the bank. Because my mother had listened to her mother's advice -- letting my father make all the financial decisions -- she said she could easily blame all their financial problems on him. Her hands were clean. And now that they had hit rock bottom and fate had borne out, my mother took over. She went back to nursing--something my father promised her she could quit when he finally made it big. Hospitals were desperate for nurses when this happened in 1986 (they still are). She was immediately hired at $60,000 a year with a $3,000 sign-on bonus, incredible health insurance and company-paid retirement. Each month she'd take $200 off the top to put into her own private savings account--she didn't tell my dad this account existed. Then she would write the checks to pay bills. She said it was HER turn to take over. She turned things around based upon her own instincts, knowledge and convictions. My dad was very humbled, he struggled to find work in his profession and when it finally came he was a changed man -- finally recognizing that the best work is teamwork. The moral to the story is that often when facing new, life-altering hurdles -- such as the diagnosis of a strange, intricate, chronic illness -- that's it is much easier to turn over all the decision-making to one person. Then, if anything goes wrong you are absolved from blame. The blame won't lie at your feet, you were only doing what doctors told you. Well, sadly you can't put all the decision-making on doctors. They are human and don't know everything. They don't follow your children around 24-hours a day. They don't know the individual make up of your child and your family situation. Doctors sometimes omit telling you things, often because they just don't think to bring it up. How many of you had doctors that told you about the Zithromax studies after the trials were completed? Some doctors do things as standard protocal because that's what someone else told them to do. Again, let someone else make all the decisions then if anything goes wrong, you lay the blame at someone elses feet. If I'd listened to the five different doctors who said nothing was wrong with my child, then who knows how long it would have continued before I finally read about CF and demanded a sweat test -- taking everyone of those doctors by surprise. If I'd put blind faith in doctors, then I would have stopped pursuing the reason for my son's sudden lung bleeds. But I persevered, found the cause, and stopped it. If I'd put blind faith in doctors, I wouldn't have pressured my son's doctor into putting him on daily Zithromax in April 1999, years before the CFF thought to undertake their own study. It was the persisting reports that some of us renegade parents were seeing dramatic effects due to Zithromax that helped propel the study that you benefit from today. If I'd put blind faith in doctors, then in the summer of 2001, my daughter would have been dismissed from the ER without having a CT scan. But I persevered and the scan confirmed my suspicion that she'd fractured her skull, which resulted in downgrading her condition and immediate transfer by ambulance to an out-of-town hospital. If I'd put blind faith in doctors who said magnesium deficiency isn't much a problem with people with CF, then my son's health would have continued deteriorating. Instead, within less than two months time -- following my instincts using only a special nutritious diet, mineral supplements and essential oils -- my son's health completely turned around and we killed off a bacteria and fungus that had suddenly invaded his lungs that HIS doctor had chosen not to treat. I agree that CPT is important. But I equally agree that doctors and parents must not ever assume a cookie-cutter approach to any chronic illness treatment. In a 2-year old that is producing little mucus, I believe there is more harm than good in forcing CPT twice a day, especially in a downward position that is likely scary to her. We all have some sort of phobia--my phobia is heights. If someone were to dangle me off a ladder saying it's for my own health, I'd say forget it; find another option. Yes it is important to jiggle loose the mucus; I am not disagreeing! But there are many people with CF who are well today using alternative airway clearnance methods. You CAN do the same for a 2-year old. When my son was first diagnosed, his pulmonary doctor said to do CPT twice a day. But no amount of pounding produced results. So I dropped it to a nightly session. BUT, this was something I monitored on a daily basis. During allergy season when sinus drainage affected his lungs, I would add a quickie morning session. This could easily be done with him standing up. I would stand behind him and he would raise his arms away from his body; I'd cup my hands and clap the sides of his ribcage. This usually produced a lot of coughing and he could easily spit out whatever he coughed up. I kept doing this until he didn't cough up anything else -- it would take no more than five minutes. But during times of severe CF flare ups he' get what I called a " faucet effect. " There would be so much over-production of mucus that as soon as I finished a session, within minutes I could easily have done another one. Those times are heartbreaking; you'd do anything to know how to turn off that faucet so your child will get better. It takes less effort when we put all our faith in doctors instead of learning for ourselves the many different medicines and treatments that exist in the world. Western medicine is not perfect, and indeed many things we see coming out of Western medicine have so many side-effects that it actually causes a downward spiral in health. I hate seeing that happen to our children. Years ago, my son and I were asked to judge two separate studies involving children (and later, teens) and their parents handle CF issues regarding meds and treatment disagreements and compliance. When I asked my son's doctor why we were picked as judges, not study subjects, he grinned and said, well it's because whatever you're doing is working. I know CF is progressive, but I know in most cases you can slow the progression. You have to first know basic things about the body -- you have to make it your business to learn about inflammation and how it starts and what causes it and how you can change it. It's more intricate than you think but easier to manage than you realize. But does your doctor share these things with you? Most doctors are pressed for time and it's just easier for them to say " Do as I say. " The doctor prescribes an antibiotic and most parents don't know whether that's even the right antibiotic or combination of antibiotics. And most parents go right on giving the antibiotics without doing the first thing to squelch the underlying inflammation. I know there are certain medicines my son has to take, just as I've learned there are certain things the doctors never look for until I bring it up! How maddening this is! They're supposed to be the doctors and one thing I have learned this past year is that most doctors are not even reading the research of their colleagues or demanding their patients (or parents) become more knowledgeable to help with the decision-making. Chronic illness is a lot more than just holding someone else's hand and sympathizing when the going gets rough. It's about being courageous enough to take back some of that 100% blind faith you put in your doctors and putting it in yourself. Kim Mom to (23 with asthma and CF) and (20 asthma, no CF) Hi Shanna, this all reminds me a lot of our experience with albuterol. After we had given it for one year to Fiona I found out that it is a short time acting bronchodilator. Since Fiona never had RAD or bronchoconstrictions of any kind I wondered why albuterol was prescribed. I asked the doc, whether she thinks that albuterol helps Fiona. She said " no " . I asked what will happen when we stop to use it. She said " nothing, but it's standard treatment for pwcf in our clinic " . We discontinued the albuterol the next day and our doc was right, nothing changed. I would ask the doc why it is necessary to do CPT at least two times a day. I think that the docs just cover their butt and couldn't care less about the side-effects of their orders. Peace Torsten, dad of Fiona 5wcf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2002 Report Share Posted November 17, 2002 Shanna and , Many years ago my mom told me that shortly after she married my dad, her mother took her aside and told her to my dad handle all the family finances -- paying the bills, tax returns, investments, etc. When my mom asked why, her mother (who has a masters degree and is a devout Catholic) told her that if the husband handles all the finances and anything should go wrong, then the blame could be solely placed at the feet of the man. For the first 23 years of their marriage, my mom worked as a nurse, and each month she would turn her meager paycheck over to my dad. He'd paid the bills that he could and stuff the rest in drawers when he ran out of money; he filed income tax returns and extensions; he slammed the phone down on debt collectors, and when he ran low on money he'd send my mom to one of us daughters asking to borrow our babysitting money to buy groceries. He had--still has--an ego big as all outdoors. Eventually, he started his own business--able to afford two Mercedes, built an indoor pool, went on a cruise, had a small staff of employees and a very good accountant. But he would listen to no one. And within a couple years when the Oklahoma oil bust hit, he was bankrupt. They sold whatever they could and moved -- unable to sell their home, they left it behind for the bank. Because my mother had listened to her mother's advice -- letting my father make all the financial decisions -- she said she could easily blame all their financial problems on him. Her hands were clean. And now that they had hit rock bottom and fate had borne out, my mother took over. She went back to nursing--something my father promised her she could quit when he finally made it big. Hospitals were desperate for nurses when this happened in 1986 (they still are). She was immediately hired at $60,000 a year with a $3,000 sign-on bonus, incredible health insurance and company-paid retirement. Each month she'd take $200 off the top to put into her own private savings account--she didn't tell my dad this account existed. Then she would write the checks to pay bills. She said it was HER turn to take over. She turned things around based upon her own instincts, knowledge and convictions. My dad was very humbled, he struggled to find work in his profession and when it finally came he was a changed man -- finally recognizing that the best work is teamwork. The moral to the story is that often when facing new, life-altering hurdles -- such as the diagnosis of a strange, intricate, chronic illness -- that's it is much easier to turn over all the decision-making to one person. Then, if anything goes wrong you are absolved from blame. The blame won't lie at your feet, you were only doing what doctors told you. Well, sadly you can't put all the decision-making on doctors. They are human and don't know everything. They don't follow your children around 24-hours a day. They don't know the individual make up of your child and your family situation. Doctors sometimes omit telling you things, often because they just don't think to bring it up. How many of you had doctors that told you about the Zithromax studies after the trials were completed? Some doctors do things as standard protocal because that's what someone else told them to do. Again, let someone else make all the decisions then if anything goes wrong, you lay the blame at someone elses feet. If I'd listened to the five different doctors who said nothing was wrong with my child, then who knows how long it would have continued before I finally read about CF and demanded a sweat test -- taking everyone of those doctors by surprise. If I'd put blind faith in doctors, then I would have stopped pursuing the reason for my son's sudden lung bleeds. But I persevered, found the cause, and stopped it. If I'd put blind faith in doctors, I wouldn't have pressured my son's doctor into putting him on daily Zithromax in April 1999, years before the CFF thought to undertake their own study. It was the persisting reports that some of us renegade parents were seeing dramatic effects due to Zithromax that helped propel the study that you benefit from today. If I'd put blind faith in doctors, then in the summer of 2001, my daughter would have been dismissed from the ER without having a CT scan. But I persevered and the scan confirmed my suspicion that she'd fractured her skull, which resulted in downgrading her condition and immediate transfer by ambulance to an out-of-town hospital. If I'd put blind faith in doctors who said magnesium deficiency isn't much a problem with people with CF, then my son's health would have continued deteriorating. Instead, within less than two months time -- following my instincts using only a special nutritious diet, mineral supplements and essential oils -- my son's health completely turned around and we killed off a bacteria and fungus that had suddenly invaded his lungs that HIS doctor had chosen not to treat. I agree that CPT is important. But I equally agree that doctors and parents must not ever assume a cookie-cutter approach to any chronic illness treatment. In a 2-year old that is producing little mucus, I believe there is more harm than good in forcing CPT twice a day, especially in a downward position that is likely scary to her. We all have some sort of phobia--my phobia is heights. If someone were to dangle me off a ladder saying it's for my own health, I'd say forget it; find another option. Yes it is important to jiggle loose the mucus; I am not disagreeing! But there are many people with CF who are well today using alternative airway clearnance methods. You CAN do the same for a 2-year old. When my son was first diagnosed, his pulmonary doctor said to do CPT twice a day. But no amount of pounding produced results. So I dropped it to a nightly session. BUT, this was something I monitored on a daily basis. During allergy season when sinus drainage affected his lungs, I would add a quickie morning session. This could easily be done with him standing up. I would stand behind him and he would raise his arms away from his body; I'd cup my hands and clap the sides of his ribcage. This usually produced a lot of coughing and he could easily spit out whatever he coughed up. I kept doing this until he didn't cough up anything else -- it would take no more than five minutes. But during times of severe CF flare ups he' get what I called a " faucet effect. " There would be so much over-production of mucus that as soon as I finished a session, within minutes I could easily have done another one. Those times are heartbreaking; you'd do anything to know how to turn off that faucet so your child will get better. It takes less effort when we put all our faith in doctors instead of learning for ourselves the many different medicines and treatments that exist in the world. Western medicine is not perfect, and indeed many things we see coming out of Western medicine have so many side-effects that it actually causes a downward spiral in health. I hate seeing that happen to our children. Years ago, my son and I were asked to judge two separate studies involving children (and later, teens) and their parents handle CF issues regarding meds and treatment disagreements and compliance. When I asked my son's doctor why we were picked as judges, not study subjects, he grinned and said, well it's because whatever you're doing is working. I know CF is progressive, but I know in most cases you can slow the progression. You have to first know basic things about the body -- you have to make it your business to learn about inflammation and how it starts and what causes it and how you can change it. It's more intricate than you think but easier to manage than you realize. But does your doctor share these things with you? Most doctors are pressed for time and it's just easier for them to say " Do as I say. " The doctor prescribes an antibiotic and most parents don't know whether that's even the right antibiotic or combination of antibiotics. And most parents go right on giving the antibiotics without doing the first thing to squelch the underlying inflammation. I know there are certain medicines my son has to take, just as I've learned there are certain things the doctors never look for until I bring it up! How maddening this is! They're supposed to be the doctors and one thing I have learned this past year is that most doctors are not even reading the research of their colleagues or demanding their patients (or parents) become more knowledgeable to help with the decision-making. Chronic illness is a lot more than just holding someone else's hand and sympathizing when the going gets rough. It's about being courageous enough to take back some of that 100% blind faith you put in your doctors and putting it in yourself. Kim Mom to (23 with asthma and CF) and (20 asthma, no CF) Hi Shanna, this all reminds me a lot of our experience with albuterol. After we had given it for one year to Fiona I found out that it is a short time acting bronchodilator. Since Fiona never had RAD or bronchoconstrictions of any kind I wondered why albuterol was prescribed. I asked the doc, whether she thinks that albuterol helps Fiona. She said " no " . I asked what will happen when we stop to use it. She said " nothing, but it's standard treatment for pwcf in our clinic " . We discontinued the albuterol the next day and our doc was right, nothing changed. I would ask the doc why it is necessary to do CPT at least two times a day. I think that the docs just cover their butt and couldn't care less about the side-effects of their orders. Peace Torsten, dad of Fiona 5wcf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2002 Report Share Posted November 18, 2002 Hi Shanna, RAD is reactive airways disease. And albuterol is, as you said it right, an emergency drug. It opens up the airways at once and for a short time. I don't know how long the effect lasts (anyone else?), but it can only be helpful when you do the CPT within that time-span. You also asked what autogenic drainage is. There is a video about it at http://www.cfcare.com/autogenic.htm I don't have that real player installed on my computer, but maybe you can download it and watch. And below is a simple explanation from the Cystic-L Handbook. Since the vest isn't available here, it's the european alternative for independent lung clearance. Another advantage is, that you can do it everytime everywhere and don't have to haul half a ton of equipment. Kids learn it here when they are five or six. Peace Torsten, dad of Fiona 5wcf Autogenic Drainage Autogenic Drainage clears secretions further down the airways than can be reached by a cough. This method of airway clearance keeps the airways open, similar to the PEP mask theory. Autogenic Drainage uses a combination of breathing techniques at different levels to move the secretions up to where they can be " huff " coughed out. The first level is unsticking the mucus with a low-lung volume breathing, then collecting the secretions with mid-volume breathing, and finally removing the secretions with " huff " coughing at a higher level. This method of airway clearance needs to be taught to the patient and requires much discipline and concentration when performing. It has the advantage of allowing total independence; no equipment or other people are necessary to complete this form of airway clearance. It is a very gentle procedure; if you are doing AD correctly you will not cough violently. This gentler form of therapy is wonderful for people who are prone to hemoptysis. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.