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As your child grows, develops and becomes more aware of his or her routine, medications, and treatment, it’s important to continue to involve and engage your child in their care. Your CF clinic team member will work with you to suggest adaptations to better suit your child’s evolving needs. Below you will find advice that may be helpful as your child transitions through various life changes.
Supporting your child to begin school can be an exciting yet anxiety-producing experience. A key component in facilitating this transition is ensuring that the school staff and teachers have access to information about cystic fibrosis. Cystic Fibrosis Canada has a resource available to provide educators with background information on the experience of children and adolescents with cystic fibrosis.
You may also want to talk to your CF clinic about how to manage administration of medications during school hours. A school nurse, for example, may be willing to help.
In anticipation of the 2016 back to school season, CF Canada developed an insightful guide to help parents and teachers best provide an educational environment in which students with CF can thrive and succeed. The guide includes critical facts that teachers and parents should be aware of as well as tips for helping students with CF feel more comfortable in the classroom.
An additional resource has been made available to you, “Teacher Template” created and generously shared by Anne-Marie Beausoleil, Essex-Kent Chapter. The template is to be customized to your child’s needs, and highlights some of the accommodations that they may be required, during the day to allow them to stay as healthy as possible while attending school environment.
At school, your child will be exposed to more germs. In order to support them to be as safe as possible, it is important to instruct your child about hand washing and cough hygiene. This information is included in the Overall Health and Wellness section.
As your child grows and matures, their nutritional needs will change. It is important to be seen at your CF clinic regularly as recommended by your CF clinic team. Eating a CF diet and taking enzymes can be a difficult task. You may want to talk with your clinic team and other parents about strategies and suggestions.
At each clinic visit, weight will be measured and compared to the last visit and plotted on a graph to monitor. At home you can ensure that your child eats what is recommended by your team. Ask about quick tips and tricks to add high calorie foods as required.
For some children, even with a special diet and pancreatic enzymes they cannot meet their energy needs and fail to gain weight or grow. After careful consideration and discussion with caregivers and family, insertion of a feeding tube may be advised. The tube delivers a high-calorie formula directly to the stomach. Tubes may pass through the nose to the stomach (nasogastric tube or NG-tube) or go directly to the stomach through the abdominal wall (gastrostomy tube or G-tube).
Nutritional status plays a huge role in a child’s overall health and wellbeing. A multitude of studies have found that chronic malnutrition negatively impacts linear growth of a child and inevitably survival. To help understand the needs of your child, please see the published Nutritional information by the Cystic Fibrosis Dietitians across Canada:
Contributions from: Daina Kalnins, MSc, RD and Janey Hughes, P.Dt, CDE