How to Prepare Your Child With Sickle Cell To Have a Safe and Enjoyable Summer

Summer is a time for fun and adventure, but for sickle cell caregivers, it can also be a time of increased worry. With the warmer weather comes outdoor activities like summer camp, swimming, and camping, which can pose risks for children with sickle cell disease. However, with some careful planning and preparation, caregivers can help keep their children safe and enjoyable this summer from month to month.

In this article I share tips for sickle cell caregivers that have helped me keep my daughter safe during summer activities. My hope is that families will work together to have a safe and enjoyable summer by:

Staying hydrated

I believe, it's important for children with sickle cell disease to stay hydrated, especially during hot summer days. Therefore I try to encourage my daughter to drink plenty of water and avoid sugary drinks that can dehydrate her. If she is going to be participating in outdoor activities, I try to make sure she has access to water throughout the day.

At an early age, I taught my daughter to keep a water bottle with her. The good news is that now, there are water bottles that can stay cold for long hours.

Avoiding the sun

Sunburn can be painful and could potentially trigger a sickle cell crisis. From my experience, it’s important to get my child to wear sunscreen with at least SPF 30 and reapply it every two hours. I try not to hinder her from having fun, but we take precautions such as wearing a hat and sunglasses to protect her face and eyes from the sun.

Even children with melanated skin need to put on sunscreen to protect the layers of their skin.

Avoiding temperature changes

For my daughter. sudden changes in temperature can trigger a sickle cell crisis. If I know my child is going to be in an air-conditioned environment, I make sure she has a sweater or jacket to keep her warm. If she will be outside in the heat, I make sure she has a hat and stays in the shade as much as possible.

I believe it’s helpful for her to dress in layers all year round.

Choosing activities carefully

Not all summer activities are safe for children with sickle cell disease. My family has learned to avoid activities that are too strenuous, such as long hikes up a mountain or intense sports. Instead, I've allowed my Warrior to consider activities like swimming, which is a low-impact exercise that can help keep her cool.

However, if swimming is a pain trigger for your child, avoiding it makes sense. Consider indoor activities like painting, taking a cooking class, or something else. One lesson I taught my daughter is to start recognizing the signs of what causes  her to be in pain early. If she plans to swim, we remember to first check the temperature of the water. Her healthcare team  recommended that the water be at least 85 degrees Fahrenheit for her to considering getting in. Every family has to learn what works for them.

Preparing important medications

We love to summer camps, but before my child goes to summer camp, participates in any outdoor activities, or go on a summer vacation I try to make sure her medication is up-to-date. We can even get a travel medication back up to prepare us? I also learned to make sure the camp or activity organizers are aware of your child's condition and have a plan in place in case of an emergency. The meeting isn’t intense, I just share special accommodations that my daughter may have.

Summer camp is fun, but just like you try to prepare the school administrators on what to look out for if your child isn’t feeling well, then you need to do the same with the camp administrators as well. Thankfully, there are summer camps with medical staff members trained specifically to help take care of children who have sickle cell disease while at camp. Check out this list of sickle cell camps and see where they are located.

Educating friends and other caretakers

From one caregiver to another, I hope sickle cell families have a safe and enjoyable summer with your children. It's important for the friends and other caretakers to understand the condition and how to help the child avoid a sickle cell crisis. Make sure they know the signs of a crisis and how to respond if one occurs.

Sometimes getting family and friends prepared just in case something goes wrong with the loved one who has sickle cell can be challenging, but there are great resources to help family members understand and prepare them for times when things go wrong.

Be prepared instead of scared

Overall, caregivers can help keep their children safe by preparing, recognizing triggers, and following the healthcare team's advice. Furthermore, it's important for sickle cell caregivers to take extra precautions to keep their children safe. Following these tips and being prepared beforehand can help reduce your stress as a caregiver and ensure your child has a safe and enjoyable summer.