Book Recommendation

hmw · Feb 21, 2010

We were given the book 'An Introduction to Cystic Fibrosis for Patients and Families' by Drs. James Cummingham and Lynn Taussig when Emily was dx'ed. It was easy to understand but had a lot of good information in it. There are a lot of chapters that just explain how cf affects various body system rather than painting some 'dark' diagnostic picture. It was good to give my parents, for example, who needed information but who would have been overwhelmed with something overly scientific or something that contained a lot of grim statistics.

Keep in mind the extent of your son's symptoms though when you are educating both yourself and others in your family. You are right- one never knows what to expect with CF and given he's gone without dx for so many years it's hard to associate a 'classic' presentation with your son and his course in many ways hasn't been the same as others who were dx'ed as babies/young children.

However, he does have significant pulmonary involvement at this point (as indicated by the pft's you told us about during the time you were waiting for his diagnosis) and will be treated that way from this point forward in all likelihood so you'll benefit from learning about that aspect of cf care, even if some of the other 'context' of the reading doesn't always apply.

I have Parenting Children with Health Issues (one of the Love & Logic books) and it's very good. <img src="i/expressions/face-icon-small-smile.gif" border="0">

hmw · Feb 21, 2010

We were given the book 'An Introduction to Cystic Fibrosis for Patients and Families' by Drs. James Cummingham and Lynn Taussig when Emily was dx'ed. It was easy to understand but had a lot of good information in it. There are a lot of chapters that just explain how cf affects various body system rather than painting some 'dark' diagnostic picture. It was good to give my parents, for example, who needed information but who would have been overwhelmed with something overly scientific or something that contained a lot of grim statistics.

Keep in mind the extent of your son's symptoms though when you are educating both yourself and others in your family. You are right- one never knows what to expect with CF and given he's gone without dx for so many years it's hard to associate a 'classic' presentation with your son and his course in many ways hasn't been the same as others who were dx'ed as babies/young children.

However, he does have significant pulmonary involvement at this point (as indicated by the pft's you told us about during the time you were waiting for his diagnosis) and will be treated that way from this point forward in all likelihood so you'll benefit from learning about that aspect of cf care, even if some of the other 'context' of the reading doesn't always apply.

I have Parenting Children with Health Issues (one of the Love & Logic books) and it's very good. <img src="i/expressions/face-icon-small-smile.gif" border="0">

hmw · Feb 21, 2010

We were given the book 'An Introduction to Cystic Fibrosis for Patients and Families' by Drs. James Cummingham and Lynn Taussig when Emily was dx'ed. It was easy to understand but had a lot of good information in it. There are a lot of chapters that just explain how cf affects various body system rather than painting some 'dark' diagnostic picture. It was good to give my parents, for example, who needed information but who would have been overwhelmed with something overly scientific or something that contained a lot of grim statistics.

Keep in mind the extent of your son's symptoms though when you are educating both yourself and others in your family. You are right- one never knows what to expect with CF and given he's gone without dx for so many years it's hard to associate a 'classic' presentation with your son and his course in many ways hasn't been the same as others who were dx'ed as babies/young children.

However, he does have significant pulmonary involvement at this point (as indicated by the pft's you told us about during the time you were waiting for his diagnosis) and will be treated that way from this point forward in all likelihood so you'll benefit from learning about that aspect of cf care, even if some of the other 'context' of the reading doesn't always apply.

I have Parenting Children with Health Issues (one of the Love & Logic books) and it's very good. <img src="i/expressions/face-icon-small-smile.gif" border="0">

hmw · Feb 21, 2010

We were given the book 'An Introduction to Cystic Fibrosis for Patients and Families' by Drs. James Cummingham and Lynn Taussig when Emily was dx'ed. It was easy to understand but had a lot of good information in it. There are a lot of chapters that just explain how cf affects various body system rather than painting some 'dark' diagnostic picture. It was good to give my parents, for example, who needed information but who would have been overwhelmed with something overly scientific or something that contained a lot of grim statistics.

Keep in mind the extent of your son's symptoms though when you are educating both yourself and others in your family. You are right- one never knows what to expect with CF and given he's gone without dx for so many years it's hard to associate a 'classic' presentation with your son and his course in many ways hasn't been the same as others who were dx'ed as babies/young children.

However, he does have significant pulmonary involvement at this point (as indicated by the pft's you told us about during the time you were waiting for his diagnosis) and will be treated that way from this point forward in all likelihood so you'll benefit from learning about that aspect of cf care, even if some of the other 'context' of the reading doesn't always apply.

I have Parenting Children with Health Issues (one of the Love & Logic books) and it's very good. <img src="i/expressions/face-icon-small-smile.gif" border="0">

hmw · Feb 21, 2010

We were given the book 'An Introduction to Cystic Fibrosis for Patients and Families' by Drs. James Cummingham and Lynn Taussig when Emily was dx'ed. It was easy to understand but had a lot of good information in it. There are a lot of chapters that just explain how cf affects various body system rather than painting some 'dark' diagnostic picture. It was good to give my parents, for example, who needed information but who would have been overwhelmed with something overly scientific or something that contained a lot of grim statistics.
 
 Keep in mind the extent of your son's symptoms though when you are educating both yourself and others in your family. You are right- one never knows what to expect with CF and given he's gone without dx for so many years it's hard to associate a 'classic' presentation with your son and his course in many ways hasn't been the same as others who were dx'ed as babies/young children.
 
 However, he does have significant pulmonary involvement at this point (as indicated by the pft's you told us about during the time you were waiting for his diagnosis) and will be treated that way from this point forward in all likelihood so you'll benefit from learning about that aspect of cf care, even if some of the other 'context' of the reading doesn't always apply.
 
 I have Parenting Children with Health Issues (one of the Love & Logic books) and it's very good. <img src="i/expressions/face-icon-small-smile.gif" border="0">

auntcob · Feb 21, 2010