Tips for Summer Caregivers for Kiddos with CF
Summer is here and that means your kiddos with CF are home for the next few months from school. Just when you finally feel comfortable releasing control the school year ends and their care is again in the hands of someone else. Whether they are attending summer camps, a new sitter, or staying with family, it’s always a bit stressful to communicate all that goes into caring for a child with special medical needs.
Here are some summertime-specific tips to making a caregiver transition as simple as possible.
Be mindful of salt intake
People with CF lose salt in their sweat much faster than people without CF. Hyponatremia, or low sodium in the blood, includes some uncomfortable symptoms like headaches, nausea, vomiting, cramping, and muscle weakness.1 In order to combat low sodium, children with CF should be encouraged to eat lots of salty snacks, add salt to meals, or add ½ tsp of salt to a sports drink in hot weather and while exercising.1,2 Make sure the caregiver knows that there is no limit of salt intake in the hot and humid months of summer.
Be conscious of standing water
As summer comes to a full swing, many people seek out water to cool off and escape the summer heat. Stagnant water sources such as ponds, puddles, drainwater, and reservoirs can be a hotspot for harmful bacteria for children living with CF. Although it’s tempting to splash in a pond or puddle, this type of water source can increase the risk of pseudomonas aeruginosa infections in the lungs.3,4 Dealing with water often requires a risk vs. benefit discussion for many families to figure out how to balance between summer fun and safety.
Practice good hand hygiene
Keeping germs at bay in the summer is an important part of summer fun. Especially at day camps, other peoples’ homes, day cares, etc, hand hygiene is so very important. Frequent hand washing or hand sanitizer use is a necessary step before and after eating, restroom breaks, and when your kiddo with CF returns home again.
Make enzyme dosing easy
Dosing and taking enzymes are a vital step for many kids and their summertime caregivers. A quick lesson in enzyme dosage and fat content is often enough for people to begin to understand. For younger children, it’s helpful to write the fat content on any snacks and how many enzymes are needed in a permanent marker. That way caregivers know exactly how to dose. For older children, teaching them how to calculate grams of fat per enzyme is an important step in their own independence.
Most importantly, have fun
All in all, children with CF are just that–children. Summertime is such a fun and exciting time of the year to learn, play, and grow as kids. Children with CF deserve those same opportunities for growth. They also desire to be treated like other children while honoring the unique care their CF requires. Finding a good balance between summer fun and ensuring they are taken care of is important!
What tips do you have for caregivers of children with CF? Share with us below!
Have you had a flare on Trikafta?
Join the conversation