Pour les patients et les aidants

 

Une grande partie de l'information sur la page Pour les patients et leurs aidants concerne les enfants ainsi que les adultes. Cette page met en évidence des informations supplémentaires sur l'exercice et la réadaptation pour les patients pédiatriques transplantés.

Comment l'exercice peut aider votre enfant

L'activité physique est importante pour la croissance et le développement normal chez les enfants et les adolescents. Les bienfaits de l'activité physique régulière chez les enfants incluent:
• une amélioration de la remise en forme
• un renforcement des os
• un coeur sain
• une amélioration psychomotrice et des mouvement de compétence (telles que la coordination main-oeil)
• une amélioration de l'humeur et de la confiance en soi
• une amélioration de l'attention et de l'apprentissage
• des opportunités pour les enfants et les adolescents de s’amuser
• des opportunités sociales

Exercice pour les bénéficiaires à long terme

Il existe de nombreux types d'exercice auxquels les enfants peuvent prendre par, chacun avec des avantages différents. Voici quelques exemples de diverses activités qui peuvent être encouragées à différentes étapes du développement de votre enfant:

 

Your child can enjoy a wide range of physical activity at any age. Try to find activities that they enjoy. "Sneaky fitness" is another great way to exercise without taking time out of your day. Examples include walking to school or to the store, taking the stairs instead of the elevator or escalator, changing television stations without using the remote and standing or stretching during commercial breaks.

 

Because we know that regular physical activity is so beneficial for children and youth, the Canadian Society for Exercise Physiology (CSEP) recently published new 24-Hour Movement Guidelines for Children and Youth in order to encourage them to “Sweat, Step, Sleep and Sit” (http://www.csep.ca/en/guidelines/get-the-guidelines). These are highlighted below.

 

For optimal benefits, children and youth (aged 5–17 years) should engage in high levels of physical activity, low levels of sedentary behaviour, and sufficient sleep on a daily basis. A healthy 24-hour day includes:

  • Uninterrupted 9-11 hours of sleep per night for those aged 5-13 years and 8-10 hours per night for those aged 14-17 years (with consistent bed and wake-up times)

  • An accumulation of at least 1 hour of moderate to vigorous physical activity involving a variety of aerobic activities; vigorous physical activities and muscle and bone strengthening activities should each be incorporated at least 3 days per week

  • No more than 2 hours of recreational screen time

  • Limited sitting for extended periods of time

 

Getting sufficient sleep, swapping indoor time for outdoor time, and replacing sedentary behaviour with moderate to vigorous physical activity can provide great health benefits. For additional information on these guidelines, visit the CSEP website at http://www.csep.ca/en/guidelines/get-the-guidelines.

Considerations for Transplant Patients

There are many factors that limit the exercise capacity in pediatric transplant recipients due to the nature of their condition. Because of this, you may be worried about having your child engage in more vigorous activity. As a parent, it is important that you encourage your child to gradually participate in activities that they will like and enjoy. If your child will have or has had an organ transplant, being physically active will not just make them feel better, it will improve their quality of life.

 

There are many people on your child’s transplant healthcare team that can talk to you more about physical activity and exercise: 

  • Physiotherapists can work with your child to make physical activity and exercise fun and part of their everyday life. 

  • Exercise physiologists use tests to understand how your child’s body works when it exercises. From these tests, they can suggest areas where your child can get stronger.

  • Dietitians teach you and your child how eating can give your child the energy they need to be active and strong.

 

Outdoor Activity and Sun Exposure

When encouraging your child to stay active and get outside, it is important to take extra care to ensure they do so safely. Everyone should be careful in the sun, especially during the hot summer months. Children are more sensitive to ultraviolet rays of the sun because their skin is thinner than adults. There are added risks for children that have received a transplant and have to take medications that make their skin more sun-sensitive. Transplant patients also have a higher risk of getting skin cancer later in life. It is best to play it safe and follow these guidelines:

 

The heat will cause your child to sweat and loose fluid through their skin. If they don’t drink enough fluids to make up for what they lose, they may get dehydrated. The kidneys need a healthy fluid balance in order for the body to work well. Drinking enough fluid to keep the kidneys working properly is important for all children, but it is especially important if your child has received a transplant.

 

In addition to taking precautions with sun exposure, children with weak immune systems (including those taking anti-rejection medicines) need to take steps to prevent mosquito bites:

  • Wear light-coloured clothing, with long sleeves and long pant legs that are tucked into socks

  • Use netting or screens for baby strollers or playpens

  • Remove standing or still water (where mosquitoes breed) around your home

  • Make sure screens on windows and doors are intact

  • If possible, stay indoors when mosquitoes are highly active (dawn and dusk)

  • Use insect repellent that contains an age-appropriate amount of DEET (30% DEET for children aged 12 and older, 10% DEET for children aged between 6 months and 12 years, DEET should not be used in babies under 6 months)

For additional resources and tips on how to prevent West Nile Virus, you can refer to online public health recommendations.

 

Participate in Transplant Camp!

Ontario

Camp Kivita offers a weeklong summer camp experience for youth ages 7-18 living with organ transplants and end stage organ failure. The camp programming includes water sports, tennis, archery, arts and crafts and leadership programs as well as a strong focus on the character development of each camper. To learn more about the camp and to register your child, visit their website at:

http://www.campkivita.ca

 

British Columbia

The Children’s Organ Transplant Society in BC offers a weeklong summer camp experience for youth ages 8-18 that have undergone organ transplant. The camp takes place at Camp Latona on Gambier Island. For more information you can contact Debbie at Debbie@childrensots.org or visit Camp Latona’s website at:

http://camplatona.com

 

International

TACKERS bring together children from around the world who have had organ transplants to participate in winter camps where they can interact with peers going through similar experiences. The camp takes place in Anzère, Switzerland and allows children to develop their independence by participating in activities including skiing, snowboarding, dog sleighing, scuba diving and paragliding. For more information and to register, visit their website at:

http://www.tackers.org/about-tackers/

Participate in Transplant Games!

National

The Canadian Transplant Association (CTA) is a registered charity that hosts national Olympic-style games every two years. The purpose of the Canadian Transplant Games is to:

  • Increase organ donation rates in Canada and other countries.

  • Demonstrate the active, healthy lifestyle that is achievable after transplantation.

  • Thank donors and donor families for their gift of life.

  • Raise awareness and educate the public about organ donation.

These games are Canada’s largest organ donation awareness event and are open to all transplant recipients over the age of 16, regardless of whether or not they are athletes. They are a great way to connect with other transplant recipients and to support organ donation endeavours! To learn how to prepare yourself for the games, visit their website (http://games.canadiantransplant.com).

 

Transplant Trots

The CTA also hosts Transplant Trots that are organized by a group of local volunteers. The Transplant Trots are independently run not for profit running and walking events held across Canada. If you would like to find out about where Transplant Trot events are being held, click on the “Events” tab in the menu on their website (http://www.transplanttrot.ca/#). Come out and run with them to celebrate life!

 

International

The World Transplant Games Federation (WTGF) is a worldwide organization with representation from over 60 countries that celebrates successful transplantation through unique and inspiring events, namely the Summer and Winter World Transplant Games. The WTGF aims to raise public awareness of the importance and benefits of organ donation by demonstrating the health and fitness that can be achieved post-transplant. The Games are open to all transplant recipients over the age of 4. To learn more about the Games and how to get involved, visit their website (http://wtgf.org/participation/).

Find a Rehab Program Near You

See the National Transplant Rehabilitation Program Directory for a complete list of Canadian transplant rehabilitation/ exercise programs. If you would like to add your centre to this list, please contact us at canrestore@cntrp.ca.

Acknowledgements

Special thanks given to the physiotherapists Robin Deliva, Catherine Patterson, Degen Southmayd, and Stephanie So from the Hospital for Sick Children for contributing to the creation of this page.

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© 2014 by the CDTRP

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