Helping Children Cope With Emotional Challenges
Parents often feel helpless or guilty that they can’t shield their child from pain.
Children Living With Pulmonary Hypertension
Children with pulmonary hypertension benefit from the same things as all children: healthy food, exercise, routines that reduce stress and lots of fun along the way.
Your child is experiencing symptoms, side effects, treatments and procedures that you need to learn about to provide support and ask the right questions. Decisions about a sick child’s chores, homework, play dates and activities become more complicated. As a parent, you’ll need to think about how much responsibility and independence you feel comfortable giving your child, how to stay attentive to your child’s needs, and how to talk about PH with someone so young.
Review PHA’s resources on helping children cope with emotional challenges, navigating medical appointments and hospital stays, finding the right summer camp and a guide to succeed in school.
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- Navigating Medical Appointments and Emergencies for Children with PH
Managing pulmonary hypertension in children involves regular medical appointments and, at times, unexpected hospital visits. Here’s what to expect and how to cope.
- Summer Camp Checklist
Planning for summer camp is more difficult when your child has pulmonary hypertension. These questions will help you find the right camp for your child.
- PHA School Resource Guide
Use PHA’s templates and letters to educate your school staff about pulmonary hypertension, create a medication and activity list for the school nurse and prepare emergency information.
- Managing Salt and Sodium Consumption
Managing sodium in your diet is one of the most effective ways to reduce water retention, which reduces strain on your heart.
- Caring for a Child with PH
Caring for a child diagnosed with pulmonary hypertension means making informed choices and ensuring your child receives the best care possible. Learn about the resources available as your family adjusts to life with this illness.
Establish routines that reduce stress
If medication management makes mornings particularly busy or stressful, try moving some of your child’s morning preparation to the night before. Packing lunches in advance, bathing or showering at night or showers and appointing a designated place for schoolbooks and backpacks simplifies morning schedules.
Routines around hospital visits also can reduce stress. Plan for meals and snacks in advance and arrange for visits from friends and family. Familiar faces can take some of the worry out of stressful experiences.
Most children with idiopathic pulmonary hypertension have normal growth and development. However, when PH is associated with another medical condition, such as Eisenmenger syndrome, you might need to address developmental issues. For example, if breathing takes significantly more effort, a child may need extra calories because of the extra effort required.
Your child may have to rest more frequently than other children depending on the activity. Which sports your child can play will depend on their treatment type and the severity of their disease. Your medical team can help you whith these kinds of decisions.
Your child should avoid playing with children who might have the flu or upper respiratory infections. They might have to wear a mask in large crowds. Ask your health care provider for recommendations that fit your child’s condition.
When a child needs to skip sports, travel or a special activity because of oxygen or medication needs, look for something to excite your child. Board and parlor games, movie nights and art projects can bring friends and family together, build self-esteem and nurture creativity. Bird watching, gardening and cooking may spark interest across generations in your home. Find out what sports will work for your child, such as golf, table tennis or pickle ball. Instead of playing the tuba, see if the drums or violin sound appealing.
Pairing a hospital visit with a special treat like a hot chocolate or a visit to a special park can help elicit a smile on an emotionally difficult day.
Video: Living with Pediatric PH
Children’s resources
Find other parents and children with PH and explore additional resources that provide support, knowledge and advice for families.
Caregiving
Your child has a chronic illness. Learn what that means for you and your family, and connect with other caregivers.
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