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Helping An Adolescent With Cystic Fibrosis
Infants born and diagnosed early with cystic fibrosis are now growing up, going through puberty, and eventually, most are becoming mature adults with families of their own. The teen years are a challenge both to the parents and the teens. Teens are beginning to assert their independence, trying to be grown up, and rebellion is a stage most teens will go through.
Teenagers feel awkward and uncertain and often lose confidence in their abilities and skills. They may feel frustrated at the drugs they need to take or the time spent having physiotherapy. They may want to pretend they are normal when they are out with their friends. They may not eat healthy, take their digestive enzymes, and teenagers often start smoking at this age. Rebellion may be a perfectly normal part of going through puberty but teenagers with rebellious habits could lead to their death.
Start when your children are small to help them understand their disease. Talk about it openly and encourage them to talk about it. Help them to be educated about cystic fibrosis. You can encourage them to be normal and still impress on them the urgency of keeping up with their treatments. Teens are easily embarrassed but if they have a good self-esteem it will be easier for them to talk about their disease with their friends. If you find your teenager is not taking care of their health, have started smoking, or are not taking their medications get them in to their doctor or a good psychologist.
Teenagers can make it through this difficult time in their life. They need a good support system that should include parents, teachers, spiritual leaders, and a peer support group. If they are comfortable enough to talk about their disease and explain it to their circle of friends, they should be better about having treatments and taking medications.
You can help your teenager by offering healthy meals, being able to listen to them and understand their frustration and fear. They should be treated normally and a parent should not become overprotective. Parents can be a tremendous help to their teen by allowing them the freedom to make decisions, fall down, get hurt, and learn from their mistakes. You should step in if they are neglecting their health and not taking their medications, as they should.
Encourage your teen to be frank with their friends. To other people it may seem strange to take a handful of pills before each meal or snack; for cystic fibrosis teens it is a necessity.
Complications for teens are nearly the same as for a younger child. The danger is they will take unnecessary chances and forget to take care of their health. Repeated infections that linger may cause serious damage to their lungs. There is a danger of a lung collapsing, coughing up blood, and even stroke or heart damage. Encourage your teen to take care of their health especially if they have the potential life-threatening disease called cystic fibrosis.
Self-Care for Cystic Fibrosis Patients
October 27th, 2010 by admin
If you have a child diagnosed with cystic fibrosis one of the most important steps you can take is to learn all you can about the disease. The good news is with the Internet you are able to find multiple sites to give you the information you need. You can track recent developments in treating the disease and be instantly notified of any breaking news. Educate yourself about nutrition, medication, treatment and how to recognize infections early.
Having a child with cystic fibrosis is stressful, especially if you are the primary caregiver and need to give your child daily chest percussion. The child should have the treatment at least twice a day and for a thirty minute period of time. Learning how to perform chest percussion could potentially save your child’s life. A doctor or respiratory therapist will help you learn the procedure.
Keeping your child healthy and caring for them includes keeping their immunizations up-to-date. Normal vaccines should be given on their appropriate schedule and you should consider having your child vaccinated for flu and pneumonia. Cystic fibrosis does not affect the immune system but when a child gets sick they may have more complications than a healthy child.
Your child should be encouraged to lead a normal life. They can take part in sports events and regular physical activity. Exercise will help loosen the mucus in the lungs and airways and improve your heart and lung functions. A child with cystic fibrosis may gain self-confidence and have a better self-esteem if they can take part in a team sport. If a cystic fibrosis patient starts exercising when they are young they are more apt to exercise when older. Simple exercise such as walking, riding a bike or swimming can help. Anything that gets you moving will help loosen the thick mucus build up.
Eating a healthy diet is important for all cystic fibrosis patients. Increasing your caloric intake, taking vitamin supplements that are fat-soluble, and taking pancreatic enzymes can help you stay healthier. Drinking plenty of liquids is another self-care tip you should know. The liquid will help thin the mucus and special care should be taken in the summer when the body lose fluids easily.
If you are a smoker, stop smoking! If you are unable to do that, don’t smoke in your car, your home, and do not allow your child to be with people who smoke. Second hand smoke is bad for everyone but especially for those who have cystic fibrosis. Avoid places that will be smoky as much as possible.
Encourage good hygiene habits for everyone in your family. Teaching your family to wash their hands before eating, after they use the bathroom, or if they have been in a public place. Encouraging hand washing is the best way to avoid infections that may turn into severe complications for a cystic fibrosis patient. Especially encourage hand washing when a child comes home from school, or an adult comes home from work.
Cystic Fibrosis and Pregnancy
October 27th, 2010 by admin
Scientists and researchers recently released a study showing a decline in birthrates of babies with cystic fibrosis since genetic testing became available. The general public has more knowledge and understanding of the disease that was a mystery for so long. In medieval times the people believed a baby was “bewitched” when they displayed symptoms of what we now know is cystic fibrosis. With new research and new methods of genetic testing, many hope there will be an another reduction in the birthrate for CF babies. Cystic fibrosis in men will make them sterile, but a woman may still conceive and carry a child to full-term or near full-term.
A child cannot be born with cystic fibrosis unless both of his or her parents are carriers of the mutant gene. That gene was identified in 1988 and is called the cystic fibrosis transmembrane conductance regulator gene. It is associated with the number seven chromosomes. If only one parent is a carrier of the gene, there is a 25 percent chance their child will be a carrier for the disease. There are millions of people in the United States alone who are carriers for cystic fibrosis but do not have signs or symptoms of the disease in their body. Most do not even know they are carriers.
Studies have been conducted on birthrates of children born with cystic fibrosis. A study from Italy shows that babies with cystic fibrosis are often preterm and have a lower than average birth weight. The birth weight was lower than normal for even full-term babies. One of the first signs of cystic fibrosis may be a failure to thrive while eating normally.
Screening for cystic fibrosis in newborns has changed and there are now new ways of testing when the baby is young. The most common form of testing is the sweat test but it is not effective for screening newborn babies. New tests are now being done with the normal blood tests babies have after they are born. The test will be looking for a protein associated with the pancreas and screening their immune system. This would remove the need for a full DNA analysis and can be done at a lower cost.
North America is concentrating on improving quality of life for newborns with cystic fibrosis and finding new ways of treatment. There is no known cure for cystic fibrosis but many new methods of testing, diagnosing, and treating the disease has given CF patients a better quality of life and increased their lifespan.
Your doctor can do genetic testing on you and your partner if there is a history of cystic fibrosis in your family. You may want to consider having the tests done before you decide to get pregnant or add to your family. Testing can be done on babies before they are born to find out if they have cystic fibrosis although there is no way to treat them. The testing gives the parents extra time to learn all they can about the disease and its treatment.