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COVID-19 & Back-to-School: A Q&A for Families of Children with PH



Resources and support make living with PH easier. PHA Canada’s Pediatrics Committee is currently developing resources to help families of children with PH. If you would like to connect with other PH families in Canada or would like to share ideas about resources that would be useful to your and other families, please contact us at info@phacanada.ca

 

Resources


Connections Magazine

Published twice a year (spring/fall) in both English and French, Connections brings together the Canadians PH community to inform, support, and celebrate one another. Filled with community news and stories, research and treatment updates, interviews with PH medical professionals, and more, Connections is a valuable resource that PHA Canada is committed to making widely available to the PH community.

Information for Families of Children Living with PH

As a parent or family member, the more information you have, the more equipped you will be to advocate for your child in a variety of situations. Explore these resources to learn more about some of the issues and challenges that are unique to children living with PH and how you can help your family to deal with life with PH.
 

PHighters PHeelings... Kids Living with PH

Part 1 & 2
   
  • Children and PH
    Early PH symptoms in children are much the same as they are in adults: exercise intolerance, shortness of breath, and blue-tinged lips and nails. Because children run around significantly more than adults, they are much more likely to get dizzy or faint with exercise or be prone to more breathlessness. Other symptoms can include fatigue, paleness, breathlessness, “asthma-like" symptoms, pounding or too-rapid heartbeat, chest pain, poor appetite, sweating, rapid breathing, and “failure to thrive”. As it is difficult for young children to express how they are feeling, it may take time for some of these symptoms to get noticed. Also, children will often push themselves harder than adults, hence the likelihood for dizziness or fainting.
  • Day-to-Day Living
    It is really important to allow your child with PH to live a normal life although this can often be a very scary thing for a parent. The natural instinct for a parent is to protect their child; this often leads parents of sick children to be overprotective. Giving your child with PH special treatment can also be very difficult for your other children. Try to treat your child with PH just the same as you would your other children and encourage them to try new things and to participate in activities that are within their abilities.
     
    Talk to your child about the importance of letting someone know if he or she has chest pain, feels dizzy, nauseated, or is otherwise feeling unwell. They should feel comfortable alerting a grown up when they are experiencing any discomfort. Also make sure that your child knows that there is no reason to feel embarrassed or ashamed about having PH when they are around their friends, even if they wear a medication pump or oxygen.
  • At School
    Before your child begins school or when starting at a new school, it is important to meet with his or her classroom teacher, gym teacher, principal, and others directly involved with your child to discuss your child's condition. Offering a brief “in service” to any staff that will be working with your child can be of value. If you are not comfortable doing this yourself, often your child's clinic can provide a nurse or child life specialist who can pay a visit to the school to better explain your child's condition.
     
    Make sure that the school has clear instructions on what to do in an emergency and that they have a plan in place that has been covered by all key staff. If you child is on a medication pump, ensure that all emergency numbers are with your child's pump in the event of an emergency. An emergency number along with the dosage and pump rate should be posted on the back of your child's pump. The school should also be made aware if your child is on blood thinners and the implications this can have. Also ask the school to notify you if there are any contagious illnesses circulating in the school.
     
    If your child is comfortable, visit his or her classroom each year when school commences to explain their medication pump and its alarm to his or her classmates, and answer their questions. This helps to take away the mystery and also alerts the other students to know if your child needs help. It also alleviates the need for your child to repeatedly answer questions from classmates. If your child approves, you can even show the other students the pump and line so they have a better understanding of what is involved.
     
    Encourage the teacher and students to treat your child like any other student and allow them to participate as they are able. Just because your child has PH does not necessarily mean he or she cannot participate in gym class. Be sure to ask your PH specialist what activities are appropriate for your child and give the school clear instructions.
  • Being Your Child's Advocate
    There is no one who will look out for the best interests and wellbeing of your child more than you will as a parent. Always trust your instincts and do not be afraid to speak up and ask questions regarding the treatment of your child. Keep a journal and record all of the information collected at your visits with your PH specialist or when your child is hospitalized. Also use this journal to record the medications your child takes and the times for each medication. Visits to the emergency room can be very scary and upsetting. Having your information easily accessible will make a difficult situation easier for you and your child. Do not be afraid to speak up if someone suggests a medication or treatment that you know is contraindicated for your child and to insist on seeing your PH specialist.
  • Taking Care of Yourself

    Right after your child's diagnosis, you will likely experience a myriad of emotions from denial to grief, depression, and anger. You may feel as though you have experienced a great loss. These feelings are normal and you need to allow yourself the time to feel them. It is important that you surround yourself with a good support network of family and friends with whom you feel comfortable talking and that you seek professional counseling if needed. This can be of value to the entire family in helping everyone to cope with this new situation in your lives.

    Dealing with the illness of a child can be especially hard on a couple. Be sure to make time to connect with your spouse and ensure you have time in which you are able to speak openly about how you are feeling away from the children. Do not be afraid to accept the help of those willing to assist you. Whether it be a night out, a cooked meal, or a bit of relief care, take friends and family members up on their offers to help in any way they can. Find things that you can do to give yourself a break and a brief escape—whether it be reading, taking a walk, a hot bath, exercise, or meditation, find something that allows you time to rest and rejuvenate. Work with your spouse to give each other some equal “down time” in order to recharge and clear your mind and do not feel guilty about taking this time. By taking care of yourself, you are able to be a better caregiver to your child.

  • What to Tell the Kids
    When someone in the family has PH, it can be difficult to know what to tell your children. It is important to remember that children can sense when something is wrong. They will hear things and wonder and worry so it is very important to have an open discussion with your children and answer any questions that they may have. You will want to consider your children's ages when deciding how many details to give them. Use age-appropriate language and detail. If necessary, seek out a counselor or a family member that your child can talk to and share their feelings. They may not want to discuss everything with you, as they will not want to worry or upset you further. Ensure that your children have lots of opportunity to speak openly and share their feelings.
  • Find PH Support
    Becoming a caregiver can be an isolating experience, but you don’t have to face it alone. Connecting with others is a great way to gain support from folks who understand what it means to live with pulmonary hypertension and can relate to what you’re going through.

    PHamilies of Children in Canada: https://www.facebook.com/groups/301369843355713/?ref=share
     
    Click this link to find support near you.
  • Learn More About PH
    Educating yourself and others about pulmonary hypertension is one of the greatest things you can do to support your child and create awareness of PH. 
     
    Click here to learn more about the condition.