Hi I just recently found out that there is a very high chance that my 3 yr old foster son has cf. His sweat test came back high a few weeks ago and was tested again this week. We don't have those results back yet. He is very tiny, closer to the size of a 24mo old. He has had almost a constant cough since he came into my care 2 months ago. He also typically has very loose bms. And gets respirtory infections easily. He is such a great kid with a wonderful spirit the giggles and laughs just don't stop. I want to do everything I possibly can to take care of him, but at this point I know so little about the disease and only his social worker has been able to visit with the doctor up to this point, so I have very little information.to go on. Please help give me some ideas as to what I can do to help him. If he does have cf what will that mean for him? Any input would be greatly appriciated. Thanks FM
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- Thread starter anonymous
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CF - Cystic Fibrosis is a genetic disease that affects how the body produces sweat/mucus. The mucus in a CF patient is thick and not easily moved. Thus the CF patient has a high frequency of lung infections/pneumonia. They also have a hard time gaining weight due to malnutrition problems caused by pancreas ducts clogged by thick mucus which prevents digestive enzymes from reaching the intestines.The life expectancy of a CF patient born aroung 2001 (The year our youngest daughter with CF was born) is 36 to 40 years of age. Life with CF requires daily breathing treatments, enzymes for nutritional benefits and frequent medical care/ monitoring.CF is no picnic. It is a nasty and horrible disease. It can be managed with good nutrition and respiratory therapy. The diagnosis and lifestyle change will greatly benefit your foster child. Once CF is diagnosed and correct treatments are started the improvements can be dramatic (as in our case) Based on what you have shared, it appears CF is very probable. I wish you the best. PS- CF kids have a ZEST and love of life most people will never experience. They "light up" a room. I have no idea why.
This little guy is blessed to have you, someone who cares and is willing to learn what to do. My daughter was diagnosed at 18 mo. At that time she was in the 5th % of a 6 mo. old weight wise. We had been battleing lung infections for a year . Finally getting the right diagnosis and doctors things turned around for her. Things can get better for your foster son also. If he does have CF, Getting his enzymes and the right breathing treatments should help him feel better. At first it seems overwhelming but things will work out. The one thing my hysband and I have always tried to do, is treat our daughter just as we would if she didn't have CF. Of course some things are different, but she has to behave just the other kids in the family. Sometimes I think that her big brothers not giving her any special treatment has helped her lungs. She thinks she can do anything they can. They are 12 & 10 and she is 6. If they jump in the pool, she does too. If they Fly down the mountain on snow toys, she does too. If you need anything, just ask. There are a lot of great people here with a lot of help and compassion. Take Care, Michelle P.S. Just love him everyday!
Hi FM,My four year old daughter was diagnosed at 8 &1/2 months. We had a rough time at the start but She has been well for the last 2 years. If you want to read her story and learn a tiny bit about CF you can visit our site at http://groups.msn.com/TeamRachelJane there are also good links to a few other CF lists/groups/sites that you may be interested in. Andrea