Seeking Moms/grandmoms of Children with Cystic Fibrosis

Hi P.-

I am so sorry to hear about your granddaughter. It is so hard to watch little ones suffer. I am sure that you have already found this website, but it seemed like a good resource and so I thought I would pass it on just in case. http://www.cff.org/

As a Mom of two children that have "issues", I can honestly say that the best thing that you could do to help is to educate yourself on what the disease is, what makes it worse and what treatments are out there to help. Educating yourself on everything from proceedures to vitamins to therapy. Find any and all advances, Doctors and treatments so that you can pass it on to your daughter/ son.

Additionally, you have a great community to tap into with your job. Talk with parents, teachers and school nurses to find out what they know and what they have heard being done. I can't stress enough how important it is to educate yourself and dictate which path is the best for your situation. In other words, don't go on blind faith trusting this particular Doctor. Do your research so that you, as a family, can figure out what makes sense for you and what is available for your granddaughter.

I hope this ehlps. Good luck.
N.

Hi P. - I am a registered nurse who works with cases of cystic fibrosis all the time. If you would like to send me a message with questions, please feel free to do so at anytime. Let me be the first to say that the prognosis for children with CF is so much better these days than it was before, and I will say prayers for your family while you learn about her diagnosis. Bless you and your family.

Hello, My son does not have CF but he does have CP cerebral palsy. I found a number of support groups through yahoo groups. One in particular is KIDPOWER. The group offers not only support from other families but respources to other great websites. The groups have helped me with some of my concerns. Hope this Helps!! and GOD bless your little Angel!!