Children's Cardiomyopathy Foundation
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COPING & HEALING

CARING FOR A CHILD:
MEDICAL CARE ISSUES

Routine Care

Because it is quite rare and unusual for an infant or young child to be diagnosed with cardiomyopathy, some physicians may not have a detailed knowledge of the disease. In terms of routine medical care, it is important that your local physician know when to refer you to a specialist if a situation is beyond their capabilities or knowledge. If you are not comfortable with your child's care or with something you have been told, do not be afraid to pursue more information on your own or seek the advice of your child's cardiologist or other specialist.

In order to monitor your child's heart condition, periodic check-ups and testing with the pediatric cardiologist are important and necessary. This is in addition to the typical pediatrician visits. Depending on your child's diagnosis, the frequency of visits with a pediatric cardiologist may vary from every 1-3 months to once or twice a year if the condition has stabilized. Testing may include blood tests, EKG, echocardiogram/ Doppler, Holter test, and chest X-ray. When dealing with specialists, ask that your local physician or pediatrician be put on the distribution list so they are informed of any new diagnosis and medical decisions. To help you manage your child's special health needs, you can develop a care notebook for your child. Useful forms can be obtained through the Center for Children with Special Needs and the American Academy of Pediatrics.

Being Proactive In Your Child's Care

You know your child best and it is up to you to advocate for the most effective medical care for your child. Here are some general tips for being well prepared and proactive about your child's care.

  • Be somewhat self-reliant and knowledgeable about your child's condition. You may find that by doing some preliminary research you will be better equipped to discuss the disease with your doctor. However, be careful about your source of information as not everything you read may be reliable or relevant to your child's situation.
  • To have a clear understanding of your child's diagnosis, you might want to review the following questions with your pediatric cardiologist. Do not be afraid to ask further questions or ask for clarification if there is something you do not understand.
    1. What type of cardiomyopathy does my child have and is there any obstruction in the heart?
    2. What areas of the heart are affected - left side, right side, atrias, ventricles, valves, septum?
    3. Is there any evidence of arrhythmia and how can it be controlled?
    4. Does my child need to have a defibrillator/pacemaker implanted?
    5. Are there any special precautions in regards to dentistry, vaccination, or travel?
    6. What limitations are there on exercise and daily activities?
    7. What medications are recommended and what are the dosages/frequency of dose? Are there any medications that my child should avoid when taking heart medications (i.e. cold/flu over counter medications)?
    8. What are the side effects from the prescribed medication?
    9. Should my child wear a medical tag bracelet or necklace? If so, what information should be on it?
    10. Are there any special precautions such as objects or areas that I need to avoid if my child has a pacemaker/defibrillator?
    11. How often should my child be evaluated?
    12. What are serious symptoms I should watch out for and when should I contact a cardiologist versus general practitioner?

For a more comprehensive list of questions, read "Questions For Your Cardiologists".

  • Prior to any appointment, consider what information you want to provide to the doctor during his evaluations. Take information that could be helpful and prepare a list of questions so that you do not forget to ask anything. When you have an appointment with a new doctor, send some background information about your child's condition prior to the meeting and also bring an extra copy to the meeting. It is also recommended that you bring a contact list of all doctors that have evaluated your child and information about his/her medications (formulations, dosages, schedule).
  • If you plan to share your child's medical information with other doctors at different medical institutions, it is recommended that you maintain a file of key reports and selected test results. Although doctors generally prefer to send information directly to another doctor, it is handy to keep a copy for your home reference. Of course, when technical or complicated issues are involved, it is best if doctors communicate directly with each other to avoid any misunderstandings.
Illnesses And Vaccinations

A child with a mild case of cardiomyopathy can usually recover safely from most common childhood illnesses but a child with severe cardiomyopathy will need to be carefully monitored for illnesses with high temperatures (i.e. flu or pneumonia) or for highly communicable colds (i.e. respiratory-synchtial virus) which can put additional strain on the child's heart. To prevent serious illnesses from affecting the heart, your child should continue with routine immunizations at the ages that pediatricians recommend for all children. Your child's physician will advise you on whether your child requires additional immunizations such as an influenza or pneumococcal vaccine. Besides vaccinations, common sense tactics such as staying away from sick people or crowds during the flu season, and washing your and your child's hands frequently with anti-bacterial soap can help prevent illnesses from spreading.

When your child does get sick and requires over the counter or prescription medicine, you should check that it is compatible with your child's heart medications. In fact, certain cold and flu medicines with pseudoephedrine should be avoided because they can contribute to irregular or quicken heart rhythms (i.e. arrhythmias, palpitations). For decongestants, a prescription for Zyrtec is good because it is pseudoephedrine free.

Knowing your child's normal temperature, and heart and respiratory rate when asleep and awake can help you evaluate whether your child is ill. As a general rule, a physician should be contacted immediately if your child's health is ever in question. This includes symptoms of wheezing, rapid (40 or more breaths per minute) or "tight" breathing, coughing, no appetite, and listlessness related to illness. If your child's illness progresses to a more serious state, your doctor may need to treat the illness more aggressively or require hospitalization for your child.

Medications

Depending on the diagnosis, some children with cardiomyopathy take up to 4 types of medications at different time intervals during the day. It is important to have a clear understanding of each prescribed drug. Some questions that you may want to discuss with your child's physician:

  1. What does the medicine do?
  2. How and when should I give the medicine to my child?
  3. What should I do if my child vomits after a dose?
  4. What should I do if my child misses a dose?
  5. What precautions or special instructions do I need to know (i.e. feeding issues, compatibility with other drugs, activity restrictions)?
  6. What are common side effects?

Doctors recommend working out a medication schedule that revolves around your child's sleep and meal times. This avoids waking them for medications and prevents vomiting after meals. Children with feeding tubes have more flexibility because medication can be directly inserted into the tube at any time. For children with more complicated medication schedules, parents suggest making a chart indicating dosages and times on an erasable magnetic board or laminated piece of paper and then checking off each time you give a dose to your child.

Even though heart medications are not known to interfere with feedings, it is recommended that you give them 1 hour before meals. Medications usually are available in both a liquid or pill form. Nurses do not advise parents to mix medications into liquids or food because a child may not finish their meal. If your child vomits after taking his/her medication, do not give the medication again until the next scheduled dose, unless otherwise instructed by a physician.

When your child receives a new medication or dosage, you should carefully monitor your child for possible side effects. If your child becomes ill, feeds poorly or vomits more than 2-3 feedings per day, it may mean that your child's medication needs to be adjusted. Low blood pressure and low heart rate resulting from certain medications such as amiodarone and captopril can also indicate that the dosage needs to be reevaluated. Providing information about your child's heart rate as well your observations to the cardiologist is valuable in determining the most effective medication and appropriate dosage for your child.

Bacterial Endocarditis

A child with heart disease has a greater risk of developing Bacterial Endocarditis (BE). BE is an infection caused by bacteria that enters the bloodstream through a surgical incision, and settles in the heart lining, heart valve or blood vessel. It is a serious illness that requires prolonged treatment with intravenous antibiotics in a hospital. All patients with cardiomyopathy should take antibiotic prophylaxis an hour or two prior to certain dental or surgical procedures. The dose will vary according to your child's weight, heart condition and the planned procedure. The American Heart Association recommends using antibiotic prophylaxis when patients undergo removal of tonsils and adenoids, surgeries involving gastro-intestine, genital or urinary tracts and dental procedures that may cause the gums or mouth to bleed. When in doubt, check with your dentist, orthodontist or doctor prior to any procedure.

Issues With Implanted Pacemakers And Defibrillators

For children at risk of arrhythmia or a slow heart rate, the cardiologists may suggest implanting a pacemaker or defibrillator. Depending on the age and size of your child, the device may feel large or uncomfortable after surgery but children do eventually adapt to the size without problems. Working with a physical and occupational therapist should help your child get back on track developmentally.

After your child has been inserted with a pacemaker or defibrillator, you should receive a patient guidebook and a patient identification card with your electrophysiologist or cardiologist name and number on it. Regular visits with both your child's cardiologists and/or electrophysiologist will be necessary to check the system's function and battery life. During visits, the doctor will use special equipment to check whether the system has fired and how often. This information helps the doctor determine the course of treatment for your child.

There are some general guidelines for maintaining your child's pacemaker/defibrillator that should be communicated to your child when they get older.

  • At all times, carry your child's patient ID card for emergency reference. When traveling and going through metal detector alarms, show your child's ID card to airport security guards.
  • Inform all your child's physicians and dentist that your child has a pacemaker/defibrillator. With certain medical procedures, special precautions are needed when exposed to diathermy equipment (intense heat treatment devices), electrocautery (electronic device to stop bleeding), magnetic resonance imaging (MRI), and hi-energy radiation (to treat cancer).
  • Follow your physician's recommendations regarding exercise. In general, contact sports or activities that may lead to rough contact in the area around the device should be avoided. Your child should also avoid massaging the surrounding area where it's implanted.
  • Because the system is an electronic device, your child needs to avoid strong electrical or magnetic fields which can temporarily slow down or speed up the system. Your child's pacemaker/defibrillator is safe from typical low wattage electrical interference (household appliances, handheld devices, computers, light industrial tools), but there are some devices that he/she should either stay away from or keep a safe distance of at least 12 inches. These include strong magnets or magnetic wands used by security, high power lines, heavy electrical or industrial equipment (power generators, welding instruments), anti-theft devices at libraries or department stores, transmitting antennas (i.e. stereo speakers from large systems, transistor radios, boom boxes), engine alternators, battery-powered cordless power tools (screwdrivers, drills) and cellular phones. If you have questions about a particular device or appliance, you should contact your electrophysiologist or cardiologist.
Handling An Emergency

Family members should be ready for an emergency at all times whether it is at home or out of the home. Family members should learn cardiopulmonary resuscitation (C.P.R.) and familiarize themselves with the nearest hospital that can handle a cardiac emergency. You may want to agree on an emergency plan of action with your cardiologist and local physician/pediatrician in case you need to reach them after office hours. It is also helpful to keep a list of your child's current medications and important doctor numbers by the phone and with you at all times.

Preparing for an emergency also means being able to identify the signs of infection, cardiac arrest, heart failure or serious drug reactions. Symptoms in children are usually harder to detect because they are not as pronounced as in adults, and children may have a harder time communicating how they feel. If your baby or child exhibits any of the below signs or symptoms, you should call emergency 911 immediately.

  • Bluish tint to the skin or very pale complexion
  • Difficulty breathing
  • Sluggishness or lack of responsiveness (acts like a "rag doll")
  • Trembling or seizures
  • High fever or very cold extremities
  • Heavy sweating
  • Persistent chest pain, pressure or discomfort that is unrelieved by rest or change of position
  • Feeling faint or dizzy
  • Abnormally fast or weak pulse
  • Unexpected neurological or behavioral problem (related to speech, vision, hearing and loss of balance/coordination)

If your child is going to school and you are concerned about a medical emergency occurring when you are not with him/her, you should consider having your child wear some form of medical identification stating his/her medical condition, medications, allergies, and emergency contact numbers. Medical ID jewelry informs others of your child's cardiomyopathy and ensures appropriate and timely medical care from first responders and medical personnel, preventing possible misdiagnosis and medical errors.

Medical ID retailers offer different jewelry styles and metal finishes to suit the lifestyle of children, teens, and young adults. Formats vary from bracelets, pendants, necklaces and sports bands to watches, charms and traditional "dog tags." Medical ID jewerly and service companies to consider are MedicAlert, Sticky Jewelry and American Medical ID. There are also alternative companies such as Lauren's Hope, Beaded Daisy, N-Style ID, and Petite Baubles Boutique that offer "stylish" medical ID options for the more image-conscious child or teen. In addition to the traditional stainless steel necklace or bracelet, these retailers offer fashionable beads such as pearls, gemstones, and Swarovski crystal as well as higher-end materials such as 14K gold, sterling silver, and titanium. Bracelets come in the traditional metal chains and also with interchangeable rubber, beaded, leather or polyester "sports" bands.

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