Fun ones. Toys they like are the best for them... Kids with CF are all different, so find out what they want.
Any. Toys that involve blowing can be helpful, like whistles, bubbles, etc. Any blowing type toy can help with the respiratory therapy that a child with cystic fibrosis may have.
Supportive care. CF patients benefit from active coordinated care involving their pcp and a regional cystic fibrosis care center. These are usually part of a children's hospital and involve pediatric pulmonologists and other respiratory care specialists.
1 in 4 or 25% Genetic counseling prior to pregnancy is very important if there is a family history of cystic fibrosis. There are many options available to parents who have already had a child with cystic fibrosis.
1 in 4 or 25% For two parents who are carriers there is a 25% chance their child will have the disease, 50% the child will be a carrier of the disease and 25% chance that the child will neither be a carrier nor have the disease.
Possible every time. If you look at the genetics, the first affected baby tells you both parents carry a copy of the defective recessive gene. That means every time they get pregnant there is only 3 possible outcomes. Affected (CF), carrier, or non-carrier normal. The percentages are 25/50/25.You can look on the issue as having a 75% chance of healthy 2nd kid, or not.
Clinic/online. Your CF clinic should be able to help you and other family members, and direct you towards available help channels, a lot of them online. The clinic's social worker should be a great source for that information. A great source for CF families and good place to start online is the cystic fibrosis foundation website http://www. Cff. Org/livingwithcf/.
Support. Go to your local CF treatment center, they will have oodles of resources for you and your child. The CF foundation has a list of approved centers.
Heavy. The new science of epigenetics tells us that our genes can be manipulated by diet and non-caloric supplements. It does not cure the disease but it sure helps! I have done it with some children wth cystic fibrosis. Recurrent lung infections are the major problem.
Varies considerably. There is considerable variance between children and between institutions for the cost of of hospitalizing a child with cf. Children have variable needs for hospitalization depending on their genotype and adherence to their regimen, and (unfortunately) there is a large amount of variance in practices while hospitalized and costs for these practices.
No. Clean helps & dust free helps for any kid. To some extent this ideal is relative and perfection on either point is unrealistic. With a stable hygienic environment, close monitoring by a CF center, & proper nutrition, these kids do well. Your CF center should have guidelines for healthy living they will share with you during your regular followups.
Is it important for a child with cystic fibrosis to be in a moderately clean and dust free environment?
Yes. Avoiding respiratory irritants is a good rule for a child with cf, but kids with this disease should not be restricted from living a life as normal as possible.
Yes. Moderately is the key word here. The germs that cause problems in children with CF often come from within them or from a hospital environment. Thus, while they should not be around other folks with cf, they don't need to be "kept in a bubble". Children with CF can also have asthma, so if allergies are a trigger, exposure to dust and other allergens can cause more symptoms. Playing outside is fine.
High fat foods. Fats contain twice the calories of proteins or carbohydrates per ounce so high fat foods or supplements are the easiest way to add extra calories to the diet. Common examples include peanut butter, cream, butter, high fat cheeses, pizza, salad dressings, and many other foods. Remember with a higher fat diet the child will need larger doses of pancreatic replacement enzymes.
CF Nutrition. High calorie foods have more calories per ounce. For example, a tablespoon of olive oil, an ounce of cheese has more calories than same amount of rice. Adding cheese, olive oil, nuts, dressing to the meal will help boost calories. In addition, supplements are available specifically for CF patients. The cff. Org and prmg respiratory practice (fax 858 259 9689) can provide further information.