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Cystic Fibrosis In Children
WHAT YOU NEED TO KNOW:
Cystic fibrosis (CF) is a lifelong condition that affects your child's lungs, digestive system, and other organs. His mucus, tears, sweat, and saliva become so thick and sticky that they clog his lungs and digestive system. CF typically causes problems with breathing and with breaking down and absorbing food. Cystic fibrosis is a genetic disorder. If you or close relatives have CF, there is a higher risk that your children may also have it.
WHILE YOU ARE HERE:
is a legal document that explains the tests, treatments, or procedures that your child may need. Informed consent means you understand what will be done and can make decisions about what you want. You give your permission when you sign the consent form. You can have someone sign this form for you if you are not able to sign it. You have the right to understand your child's medical care in words you know. Before you sign the consent form, understand the risks and benefits of what will be done to your child. Make sure all of your questions are answered.
Stay with your child for comfort and support as often as possible while he is in the hospital. Ask another family member or someone close to the family to stay with your child when you cannot be there. Bring items from home that will comfort your child, such as a favorite blanket or toy.
Your child may need to eat foods that have extra calories, fat, vitamins, or calcium. A dietitian will help you choose the best foods to give your child energy and strength.
Your child may need extra oxygen if his blood oxygen level is lower than it should be. Your child may get oxygen through a mask placed over his nose and mouth or through small tubes placed in his nostrils. Ask your child's caregiver before you take off the mask or oxygen tubing.
- Antibiotics help fight or prevent an infection caused by bacteria.
- Antiinflammatory medicine helps decrease inflammation in your child's lungs and help him breathe more easily.
- Mucus thinning medicine is breathed in to help thin lung mucus so your child can cough it up more easily.
- Bronchodilators help open the air passages in your child's lungs, and help him breathe more easily.
- Pancreatic enzymes help your child's digestive system break down food and absorb nutrients properly.
- Blood tests may show be used to find signs of infection and to check kidney function.
- Pulmonary function tests will show how much oxygen your child's body is getting. He breathes into a mouthpiece connected to a machine. The machine measures how much air he breathes in and out over a certain amount of time.
- A sputum sample is tested to find common sources of infection that can happen along with CF. Mucus from your child's lungs is collected in a cup when he coughs. He may need to give 3 samples of sputum, usually first thing in the morning.
- A fecal fat test is used to check the amount of fat in your child's bowel movements. His body may not be able to absorb fat from the foods he eats. You will be told how to get a sample of each bowel movement your child has over a 72 hour period.
- A CT scan , or CAT scan, takes pictures of your child's sinuses. The pictures may show growths, swelling, and mucus buildup. Your child may be given a dye before the pictures are taken to help caregivers see the pictures better. Tell the caregiver if your child has ever had an allergic reaction to contrast dye.
- Airway clearance techniques are exercises to help remove mucus so your child can breathe more easily. His caregiver will show him how to do the exercises. These exercises may be used along with machines or special devices to help decrease your child's symptoms and risk for infection.
- Surgery may be needed if your child has severe damage to organs, such as his liver or lungs. Ask your child's caregiver for more information about surgery.
- A ventilator is a machine that gives your child oxygen and breathes for him when he cannot breathe well on his own. An endotracheal (ET) tube is put into your child's mouth or nose and attached to the ventilator. He may need a trach if an ET tube cannot be placed. A trach is a tube put through an incision and into his windpipe.
Your child's symptoms may not go away, or may come back after treatment. His lungs, liver, or pancreas may be damaged. Your child may not get enough nutrients. He may not grow and gain weight as he should. He may become weak and have an increased risk for broken bones. Your child can develop pancreatitis or diabetes. He may be at higher risk for lung infections. Your child's liver can develop cirrhosis (scarring) and not work normally. He may have severe breathing or bleeding problems, or a collapsed lung. These problems can be life-threatening.
CARE AGREEMENT:You have the right to help plan your child's care. Learn about your child's health condition and how it may be treated. Discuss treatment options with your child's caregivers to decide what care you want for your child.
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The above information is an educational aid only. It is not intended as medical advice for individual conditions or treatments. Talk to your doctor, nurse or pharmacist before following any medical regimen to see if it is safe and effective for you.