My name is Kristine, I am a wife to Tom Hendricks, mother to Nik, Ashley, Tommy and Tyler. We live in Saint Louis Missouri. I started this blog after Tyler was diagnosed with Cystic Fibrosis. Not only do I hope to keep our family and friends up to date, but also for me to have a place to go with my thoughts. I have found others that understand what I'm going through, that have been there already or are facing it all as I am.
Tyler's mutations are deltaF508-621+1g>T
Creon - 1 and 1/2 capsules with every feeding CPT- twice daily 15 minutes per session
_Cystic Fibrosis *CF* is one of the most common genetic diseases, especially in Caucasian populations, & affects about 30,000 people in the United States. An individual must inherit two defective genes (one from each parent) to have CF. The defective genes cause the body to produce abnormally thick and sticky mucus that clogs the lungs, and causes difficulty breathing from mucus accumulation in airways. It can be detected by faulty digestion and deficiency of pancreatic enzyes, which keep the pancreas from breaking down and absorbing foods.
-Without treatment, Cf results in death for 95% of affected children before age 5.
-The median age for people with CF is about 36 years, but the number increases each year thanks to new medicines.
-About 1,000 new cases of CF are diagnosed each year.
-More than 95% of men with CF are sterile.
-CF occurs in aprox. one of every 3,500 live births.
-One in 400 white couples are at risk for having children with CF
-Each time two carriers conceive, there is a 25% chance that theit child will have CF, a 50% chance the child will be a carrier of the CF gene; and a 25% chance that the child will be a non carrier.
-More than 10 million Americans are unknowing, symptomless carriers of the defective gene.
-The mucus build up can block the bile duct in the liver, eventually causing permanent liver damage.
-CF appears usually in early childhood where diagnosis is most important. Today, mother's can be tested while they are pregnant to see if their child will have CF.
-There are more than 1,000 different mutations of the CF gene.
-A sweat chloride test is the standard diagnostic test for CF. A higher amount of salt found in the sweat indicates CF.
-To help with digestion, many CF patients take enzymes with their meals to help the pancreas break down the food.
Was wondering if anyone else out there has trouble balancing life with CF...I have 4 great kids, 3 without CF. It seems like life is getting alot harder to keep on track. My oldest will be 16 in a week or so and that's a milestone that we all should be enjoying. But its hard for me to balance out the normal kid stuff with all the extra with Tyler. Even going out to dinner as a family is a struggle for me because I'm so paranoid of Ty getting sick, I know i am probably over-reacting but i cant help it . Everyone tells me not to keep Ty in a "bubble" but it think there is a fine line between the "bubble" and taking risks with his health. I guess as time goes on I will relax a bit, for everyone else in the house's sake. I read some of the other mom's of CF kids blogs and I wonder how they have so much confidence with everyday life. Sometimes its really hard for me to handle his diagnosis. I think alot has to do with the lack of education of CF, our CF team seems a little vague ..or maybe I'm just used to knowing up front what we are dealing with and then handling it..CF is not like that ..I don't play the waiting game well....