Just found out that my six year old daughter has CF. For the fast six years she has been treated for asthma. At birth she had a collapsed lung, RSV virus along with multiple trips to the ER w/ Resp. illnesses. It wasn't until the birth on my youngest that a positive CF gene was dectected. Its a lot to digest! The treatments seem so aggressive. Any feedback?
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New to CF
- Thread starter hlgconk
- Start date
Well first of all......Welcome. I am sorry that daughter had such a rough start in life, but at least now you have a dx & hopefully can level out her health a bit. CF treatments are aggressive & they need to be. The less damage that U can prevent the better for her later on in life. Its hard to think that far ahead when U are faced with such a daily ritual, but it is just as important to think about the affects on her adult life as it is her childhood. My parents were not strict with me doing my treatments as a kid. I wasnt dx until I was 7 & for the most part didnt do much treatments. Took my enzymes faithfully since the belly problem is what led to the dx, but the rest I didnt do much. I ended up in the hospital occasionally, did my time there, came home & went on with life. No big deal....until I got older & I didnt bounce back like I use to. Never having the discipline instilled in me made it very rough as an adult. After my daughter was born & I had some real rough times you would have thought I would have gotten better....only until I was feeling better than I slacked off again. Until last year when things went haywire for no "known" reason & I just couldnt bounce back. It has been a year of hell & learning the hard way that if I slack off I pay.....its no longer a game & yes I might have ended up with the problems anyway, but not being able to go back in time I will never know for sure. I have been suggesting this idea a lot to the parents of newly dx kids....keep a log of ????, concerns etc & then right down the answers or findings in the same log. It will come in handy. There is a lot to retain & I dont care how good of a memory U have, at some point you will forget things. This is a handy tool to have. I started using one last year because I couldnt keep track. In the meantime Chin up & we are here for you to vent, ask ???, get opinions or just chat!
Hi Melissa, Tahnks for the feedback. Sharing the importance of keep to a schedule and a log are great ideas. I read that 90% w/ CF need to take enzyme therapy. Is this true? I guess when we go back next week we'll hear and learn more. Any suggestion on how to get insurance co to pay for pulmozyme??? My husband has a cap of 5,00 on his insurance and pulmozyme isn't covered under my plan. I guess I need to contact the social worker, I assume she should know. Know anyone that has gotten a 504 plan having the dx of CF? what would I ask for, she's only in first grade?
Yes, it is a lot to digest. The good news is with the diagnosis you can treat for what you know -- many others are having trouble getting the diagnosis and therefore the doctors/insurance companies are questioning treatment.
About the coverage for Pulmozyme -- yes the social worker at the CF clinic should be able to help you -- ours have always been covered but I was told that there are a couple of programs out there (supported by the drug companies I think) that will pay for or help pay for the medication. Here is one organization that I am aware of too
http://www.milanfoundation.org/index.htm
part of their mission statement reads:
Assistance
Our assistance programs will include a financial assistance fund for various medical costs including medication, medical equipment and clinic/hospital visits as well as help in obtaining costly dietary supplements that is much needed to help manage this disease and keep CF patients healthy longer.
About the 504 -- there have been other posts about this topic, you might try searching for them. Generally you should ask for things that apply to your circumstance or have the possibility of happening -- if enzymes are an issue then you need to address how and when she takes them at school -- I have not had to deal with this but I understand from others it can be a big waste of time for the student to have to go to the nurses office during her lunch time to get her enzymes. Also plan for what happens when she is too sick to attend class or is in the hospital -- she should be allowed extra times for her assignments and/or tests.
About the coverage for Pulmozyme -- yes the social worker at the CF clinic should be able to help you -- ours have always been covered but I was told that there are a couple of programs out there (supported by the drug companies I think) that will pay for or help pay for the medication. Here is one organization that I am aware of too
http://www.milanfoundation.org/index.htm
part of their mission statement reads:
Assistance
Our assistance programs will include a financial assistance fund for various medical costs including medication, medical equipment and clinic/hospital visits as well as help in obtaining costly dietary supplements that is much needed to help manage this disease and keep CF patients healthy longer.
About the 504 -- there have been other posts about this topic, you might try searching for them. Generally you should ask for things that apply to your circumstance or have the possibility of happening -- if enzymes are an issue then you need to address how and when she takes them at school -- I have not had to deal with this but I understand from others it can be a big waste of time for the student to have to go to the nurses office during her lunch time to get her enzymes. Also plan for what happens when she is too sick to attend class or is in the hospital -- she should be allowed extra times for her assignments and/or tests.