Guest guest Posted June 1, 2003 Report Share Posted June 1, 2003 Does anyone have any common sense books they would recommend on the care a CF child? I find myself unsure of what is the " right " thing to do for day to day health issues and general home care cleanliness. When do I call his pediatrician vs. when to call the CF doctor. What are the things to call the CF doctor on immediately etc. Can CF child take aspirin? I read many mutations are aspirin intolerant and not that I am going to give it to ds anytime soon it would be nice to know. A week back or so I saw one mother was writing up 504 (or is that a 540) requirement for your child? Do many of you have those in place for your child at school? Seems there is just so much to learn and there aren't any guidelines anywhere. At least when my son was born there were tons of new baby/child books to help you learn and you parent. jan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2003 Report Share Posted June 1, 2003 The FAQ on cystic-L.com is quite comprehensive, though not written as a parent manual. If you search the archives on cystic-l with your key word, you can get previous regarding most questions. Norma Plourde's site is also pretty comprehensive and up to date for many questions : http://personal.nbnet.nb.ca/normap/ From her home page, click on cystic fibrosis for a wealth of topics. M. Orenstein (a M.D.) is author of a popular book among CF families: " Cystic Fibrosis, A Guide for Patient and Family " . I have the second edition published in 1997. I am not sure if there is a more recent edition. In Canada, it is not recommended that ANY child take aspirin due to the link with Reye's Syndrome, so I would hold off on that for a few years. It WOULD be convenient if there was a current handbook answering the many day to day questions we all have. I am not sure there are definitive answers for a lot of the questions but the pros and cons based on the current state of knowledge could be addressed. M najnest wrote: > Does anyone have any common sense books they would recommend on the >care a CF child? . . . > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2003 Report Share Posted June 1, 2003 Dear Jan, If ever unsure call your cf doctor. When it comes to a, my cf child, I call the cf doctor, he has pretty much replaced our pediatrician, even though she is one of my best friends. Unfortunaly, pediatricians are not train to deal with cf. Children should not take aspirin, there is a syndrome that can be worsened by aspirin I think it is called Rye Syndrome. Love, mom of a wcf, Venanzio 6 nocf, Pepe, 3nocf > Does anyone have any common sense books they would recommend on the > care a CF child? I find myself unsure of what is the " right " thing to > do for day to day health issues and general home care cleanliness. > When do I call his pediatrician vs. when to call the CF doctor. What > are the things to call the CF doctor on immediately etc. Can CF child > take aspirin? I read many mutations are aspirin intolerant and not > that I am going to give it to ds anytime soon it would be nice to > know. > > A week back or so I saw one mother was writing up 504 (or is that a > 540) requirement for your child? Do many of you have those in place > for your child at school? > > Seems there is just so much to learn and there aren't any > guidelines anywhere. At least when my son was born there were tons of > new baby/child books to help you learn and you parent. > > jan 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.