Offer encouragement. Help your child find pastimes to enjoy, like art, music, reading, or learning to cook. It's important for kids with CF to get exercise, so also look for ways your child can stay physically active. Maybe you can do some of them together. Turn to the care team.
Your child's care team can offer practical tips on living with CF, and information about clinical trials , support groups, and new therapies. Learn all you can about CF. Experts are always working on new treatments to help people with CF have a better quality of life and live longer. Online, turn to resources like the Cystic Fibrosis Foundation website. Teach self-care as your child gets older.
Start early to help your child understand and manage CF. Encourage an older child or teen to handle some parts of their health care , like disinfecting equipment or asking questions at doctor visits. Ask the care team about ways you can help your child get ready for things like going to college or getting a job. Learning about cystic fibrosis and its care helps kids and teens become confident adults managing a chronic health condition.
This is a condition marked by the widening and rounding of the tips of the fingers and toes due to lack of enough oxygen in the bloodstream. Inflammation of the pancreas pancreatitis. This organ creates many hormones and enzymes the body needs to work correctly. Congenital bilateral absence of the vas deferens in males.
Implanted devices can allow long-term access to the bloodstream for the frequent and regular administration of drugs. They can make management of a chronic condition like CF more efficient and less intrusive. They allow for proper flow of salt and fluids on the surface of the lungs, thinning the thick mucus that people with CF usually have built up in their lungs.
These are Kalydeco and Orkambi. They are prescribed for children with 10 different mutations of the CF-causing gene. As CF can affect digestive function and nutrient absorption, people with CF should discuss their diet with their doctor.
A nutritionist or dietitian may help with the management of digestive symptoms. A different kind of diet or additional supplements, such as pancreatic enzyme supplements, salt, or vitamins , may be needed to balance the absorption of nutrients. CF can lead to impaired growth. A high-calorie, high-fat diet is essential for normal growth and development in children with CF. It can help adults to maintain optimal health.
Good nutrition is vital, as individuals with CF need to maintain a robust defense against an increased risk of lung infection. CF is an inherited condition. For someone to have CF, they need to inherit the defective gene from both of their parents. The defective gene contains codes for producing a protein that controls the flow of salt and water outside of the organs, including the lungs and the pancreas. In CF, the balance of salt is disturbed, leading to too little salt and water outside of the cells and the production of thicker-than-normal mucus.
People with only one copy of the defective gene are called carriers. They do not have the condition or its symptoms. To have the disease, both parents must be carriers. If two carriers have a child , there is a:. All newborns in the U. This can indicate that a baby might have a health condition and require further investigation.
If both parents carry a defective cystic fibrosis gene, each pregnancy has a 25 percent chance of producing a child with cystic fibrosis. The cystic fibrosis gene is most common in Caucasians of northern European descent. The disease occurs most frequently in these people, but can occur in any ethnic population. Parents can be tested to see if they are carriers; however, it's not possible to identify every person who carries a gene for cystic fibrosis. Because there are hundreds of specific cystic fibrosis gene mutations not all of which are known , genetic testing for cystic fibrosis is not percent sensitive.
Doctors can also perform tests during pregnancy so parents can find out whether their child is likely to have cystic fibrosis. However, these tests are also not percent sensitive. Researchers continue working to develop a test for all carriers. Although parents often blame themselves when a child is born with cystic fibrosis, it's important to remember that nothing a parent does causes this disease. The organs most often affected by cystic fibrosis are the lungs and the pancreas, which can lead to breathing and digestive problems.
In a person with cystic fibrosis, mucus is still able to trap bacteria, but it has trouble moving out of the lungs. As a result, bacteria remain in the lungs, and can cause serious infections. The pancreas is an organ that produces proteins called enzymes, which help the digestion process. In a person with cystic fibrosis, the thick, sticky mucus blocks ducts or paths between the pancreas and the intestines.
It prevents enzymes that digest fats and proteins from reaching the intestines. As a result, people with cystic fibrosis have trouble digesting food and getting the vitamins and nutrients they need from it. Because the pancreas controls the level of sugar in the blood, a small percentage of people with cystic fibrosis may also develop type-one diabetes formerly called juvenile or insulin-dependent diabetes.
In some people with cystic fibrosis, the intestines, liver , sweat glands, and reproductive organs are also harmed. The tube connecting the testes and prostate gland can become blocked, leaving many men with cystic fibrosis infertile. However, certain fertility methods and surgical procedures can sometimes make it possible for these men to become fathers. Although women with cystic fibrosis may be less fertile than other women are, many of them are able to conceive and have successful pregnancies.
Bile ducts, which carry bile from the liver and gallbladder to the small intestine, may also become blocked and inflamed. This could cause liver problems, like cirrhosis and portal hypertension. Only a small percentage of people with cystic fibrosis develop these types of problems, however. Cystic fibrosis symptoms can vary from person to person, depending on the severity of the disease. For example, one child with cystic fibrosis may have respiratory problems but not digestive problems, while another child may have both.
In addition, the signs and symptoms of cystic fibrosis may vary with age. In some newborns, the first sign of cystic fibrosis may be that they have difficulty passing their first bowel movement meconium. This occurs when the meconium becomes so thick that it can't move through the intestines, sometimes causing a blockage. Parents may later notice their baby is not gaining weight or growing normally.
The baby's stools may be especially bulky, bad-smelling, and greasy due to poor digestion of fats. People with cystic fibrosis tend to have two to five times the normal amount of salt sodium chloride in their sweat.
Parents sometimes notice this symptom of cystic fibrosis first, because they taste the salt when they kiss their child. Pediatric cystic fibrosis may also have many of these symptoms. Growth delays often continue, and kids with cystic fibrosis tend to be significantly smaller than others their age.
They may experience shortness of breath and have difficulty with exercise. Persistent coughing or wheezing is another possible symptom, especially when accompanied by frequent chest and sinus infections with recurring pneumonia or bronchitis.
A child may have very thick phlegm sputum. Infants and young children often swallow what they cough up, however, so parents may not be aware of it. Some people with cystic fibrosis develop growths polyps in their nasal passages.
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