I was just wondering if anybody had any advice or tips that I need to know about raising a child with cystic fibrosis. Any information would be helpful. My daughter is 7 months old right now, but I'm worried about putting her in day care and how serious I need to be about who comes in contact with her. I feel like I am depriving her right now.
My brother in law has two children with CF. Listen very carefully to your doctors especially the respratory therapists! His children were kept out of day care until they went to school. You are amazing for doing so much as a single mom! Take care of yourself, when you get a chance.
M.
I do not have any advise just wanted to send you an encouraging message! You sound like an amazing, loving mom and your daughter couldn't be any more lucky to have you to love and take care of her! Keep holding up your head!!
I have a 3 year old daughter with cystic fibrosis...feel free to ask me any questions that you may have...I also am one of the main pushers of the Great Strides walk in the Dalton, GA area. I have done so much research on CF that it is not even funny. Which clinic do you use.
K.
IMPORTANT::
Some of you may have already seen or read the recall on the CF discussion boards and chat rooms but for the rest of the CF community, please check if you are in possession of the wet wipes described below.
Rockline Industries is recalling wet wipes sold under various names at Wal-Mart and Sam's Club stores from Aug. 21 to Nov. 17 because they could contain a bacteria known as Burkholderia cepacia (B. cepacia). People with weakened immune systems or chronic lung diseases, particularly cystic fibrosis (CF), may be more susceptible to infections with B. cepacia, which also is a known cause of infections in hospitalized patients, according to the federal Centers for Disease Control and Prevention. Products that are affected will likely have a bad odor described as sour milk, Rockline said.
The affected wipes have lot codes, different from bar codes that begin with the word Lot and a series of five digits from 06233 to 06253. These numbers will be followed by either ###-###-#### or ###-###-####. Packages may be returned for replacement or a refund.
For more information, call Rockline Industries at 866-964-3322 or visit www.fda.gov/opacom/7alerts.html
K., a great resource for you would be the CF Clinic at Children's Hospital in Knoxville. Please check it out if you haven't already. I am a respiratory therapist, but I usually work with adults, not kids. However, I do know that it is extremely important to do good chest physiotherapy several times daily with CF. A day care wouldn't be too awful if you could find one with strict sick policies (don't come if your child has a fever, vomiting, etc.), it could in fact help build her immune system up before she starts school. If you do decide to do the daycare thing, teach your providers chest PT and stress the importance of it for your daughter. You may also find it difficult to find a provider who will accept her due to this medical condition. I wish you the best of luck!!
I have a cousin who has a child with CF and she did not put him in daycare until he was 3 because everytime she tried to take him to public things with kids he always caught something and would get really sick. Sometimes he got pnuemonia and was in the hospital several times. He is 7 now and does better, but from what I understand the first couple of years is really hard on them and they can catch things very easy then.
