T.W. asks from Union, MI on January 29, 2007
Moms Dealing with Cystic Fibrosis
i was just wondering if there were any other moms who are dealing with there children who have "cystic fibrosis"
T. answers from Indianapolis on January 31, 2007
I don't have a child with CF but I do know of a great website, KidsHealth.org, which if you type cystic fibrosis in to the search engine will give you plenty of information and tips. Also, the specialist that your child sees may know of support groups so you can meet some parents and CF patients. I hope this was helpful.
H.T. answers from Indianapolis on January 31, 2007
I was a co-chair for one of the Cystic Fibrosis Foundations major fundraisers in Indianapolis, IN. If you go to http://www.cff.org you can find out all about the foundation and find a local chaper for your area. They can set you up with support groups and fellow moms in your area. They can also get you involved in some of the fundraisers that can benefit your family and connect you with other families. It is a great organization.
Hope this helps,
M.K. answers from Indianapolis on January 30, 2007
Hello T., I have a 13 month old son and we are actually going tomorrow for our sweat test study. So, I am hoping that I am not a mom that is dealing with CF. But, I have done approx 2 weeks of research and I found a really awsome web site to go to for assistance. Ihave logged on and asked a few questions. It is cysticfibrosis.com there are NUMEROUS moms on there that have a ton of advice! I hope that helps you and best wishes to your family!
C.P. answers from Kokomo on January 31, 2007
T., dealing with CF as you know is life changing! As a former Pediatric nurse I have seen how this changes a family. So, I would recommend talking to the nurse at your Pulmonologist's(lung dr) office. The probably know of a support group or just some other moms to hook up with. Due to privacy practices they can't give you names and numbers, but you can suggest they take your name and number and pass it on to some other moms who may be able to give you some been there, done that support. You didn't say which child has the CF, I'm guessing the 2 year old, so you are pretty involved in doing all the treatments, giving meds, etc. Just remember, that in a few years, your child will begin taking over much of that responsibility. Many kids around 5 are quite capable of doing that..just like brushing their teeth everyday. Sure they needed reminded but they are capable. Hang in there and hopefully you find some support. Oh, yeah, call the children's hospital for support group info.