Cystic Fibrosis (cont.)
IN THIS ARTICLE
Most people are diagnosed with cystic fibrosis before they are 1 year old. After a child is diagnosed, a team of health professionals will build a treatment plan based on the child's specific health problems. Treatment is different for everyone but usually involves a combination of medicines and home treatment. Home treatments include getting rid of mucus, eating healthy foods, and exercising to help prevent infections and complications. It can be challenging to follow a treatment plan, but doing so will help your child live a longer, healthier life.
The best treatment available is generally found at cystic fibrosis multidisciplinary specialist centers. These centers address the medical, nutritional, and emotional needs of people who have cystic fibrosis. You can locate one by contacting the Cystic Fibrosis Foundation at www.cff.org.
Many people with cystic fibrosis and their families need emotional support to help them live with this life-shortening genetic disease. Support groups, counseling, and educating yourself about the disease can be very helpful.
Usually, cystic fibrosis causes problems with both the respiratory and digestive systems, although sometimes it causes problems only in one or the other. Other parts of the body may also be affected. Lab tests can help your doctor know how serious the disease is and how it is affecting your child's body.
Your doctor will ask you about your child's immunizations and will schedule any shots that are needed. Children with cystic fibrosis should have all the recommended shots in addition to pneumococcal shots. For more information, see the topic Immunizations.
Your doctor will want to make sure that your child is eating properly and is gaining weight and growing at a normal rate. He or she will record your child's weight, height, and head size in order to keep track of how your child is developing over time.
Your doctor may also talk to you about different therapies used to treat cystic fibrosis. These include:
Respiratory therapy. Respiratory therapy refers to any treatment that slows down lung damage and improves breathing. The focus of this therapy is on reducing infection and getting rid of mucus to keep the lungs healthy. Medicines used in respiratory therapy include:
Other ways to help remove mucus from the lungs involve certain types of movements, coughing, or exercises known as airway clearance techniques. These include:
Digestive therapy. This therapy works to replace certain digestive enzymes, to make sure the body absorbs all the vitamins and minerals it needs, and to prevent or treat intestinal blockages. Digestive therapy involves:
Antibiotics. These medicines, which kill bacteria that cause infections, are often used to treat cystic fibrosis. Some antibiotics may be prescribed to help prevent infections. Others may be prescribed to help fight infections.
Most ongoing treatment for cystic fibrosis focuses on controlling and reducing problems or complications in the respiratory and digestive systems.
Your child is likely to continue with respiratory therapy, digestive therapy, and antibiotics.
People with severe lung disease may need to use oxygen at home. Regular visits with the team of health professionals involved in your child's care are also important.
Doctors may do certain tests to help find out what kinds of problems your child is having. These tests may include:
As children with cystic fibrosis get older, it is important for them to learn how to help care for themselves. Even though it can be hard to follow a treatment plan every day, there are many benefits of home treatments. Skipping a treatment may not make a person feel worse right away, but his or her chances of having more serious problems later increase.
Treatment if the condition gets worse
Serious cystic fibrosis problems or complications occur when the respiratory system or digestive system becomes damaged. Bronchiectasis, which is caused by long-lasting airway inflammation, is common. Most people who have complications will need to stay in the hospital. Treatment for complications may include medicines or surgery, depending on the person's age and symptoms.
Some of the tests that help the doctor know what kinds of problems your child is having include:
If complications develop, one or more of the following medicines may be needed:
Sometimes surgery is needed to treat complications of cystic fibrosis. Procedures may include:
Other treatments used to treat complications from cystic fibrosis may include:
As your condition gets worse, you may want to think about palliative care. Palliative care is a kind of care for people who have illnesses that do not go away and often get worse over time. It is different from care to cure your illness, called curative treatment. Palliative care focuses on improving your quality of life—not just in your body, but also in your mind and spirit. Palliative care can be combined with curative care.
Palliative care may help you manage symptoms or side effects from treatment. It could also help you cope with your feelings about living with a long-term illness, make future plans around your medical care, or help your family better understand your illness and how to support you.
If you are interested in palliative care, talk to your doctor. He or she may be able to manage your care or refer you to a doctor who specializes in this type of care.
For more information, see the topic Palliative Care.
It is important to talk about the kind of medical procedures you want or do not want for yourself or for your child.
eMedicineHealth Medical Reference from Healthwise
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