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Posted on 16. June 2016

Tips for Surviving Summer with Chronic Illness/Chronically Ill Children

By Jessica Leigh Johnson

As a parent of three boys with primary immunodeficiency disease (PI), I’m breathing a big sigh of relief right now. School is over! My kids survived another year surrounded by their germ-carrying peers, and the only hiccup we experienced all year was a nasty bout of norovirus. Now I call that a success.

Unfortunately for me and my frazzled nerves, which could really use three months off, summer comes with its own set of concerns and health threats. Before school even ended, baseball season was in full swing, with practices and games four nights a week. My oldest son started weight training for football. In a gym. With fungus on every surface of every bench. Ugh. And don’t even get me started on the tics. I live in an area with an insanely high incidence of Lyme disease and anaplasmosis, so I check my boys from head to toe every time they go outside.

Oh, and did I mention that we’re taking our family of six, three of whom have PI, to Scandinavia for 18 days? Yep. We’re pretty much insane.

So I guess it’s time for a change of plans. “Hey, kids, here’s the deal. We’re going to spend the summer in isolation. Indoors. Who’s with me?”

Funny, I don’t see any volunteers.

I get it. Summer is supposed to be fun. Kids look forward to it all year, and just because my kids are chronically ill, I can’t very well deny them their right to relax and enjoy their well-deserved freedom from teachers and homework. With a few tools and preparation, summertime can be a time to make wonderful memories that, come winter, will make you wish you could do it all over again!

1. Ask your children what they most want to accomplish this summer, and brainstorm ways you can make it happen.
Do they want to go the fair or play a certain sport? Do they want to attend camp? Plan ahead and mark it down, then take it easy on the days leading up to and following the event. Summertime calendars fill up fast. Rather than trying to plan every moment of every day, leaving little room to rest and relax, think about what really makes you and your children happy, and make that a priority. This could be a big thing like a family vacation. But don’t forget the little things kids enjoy like staying up past dark to catch fireflies or riding their bikes to the ice cream shop. Ask family members what is most important on their lists, and makes plans to get it done.

2. Ask yourself what is preventing you from doing things (or letting your kids do things) and what could make it possible.
Is the fear of what could happen crippling you, or causing you to tighten the parental reins on your children? I’ve been there. My first instinct is to say no when my kids ask if they can participate in certain things. Every year, my oldest son attends camp for six nights. He doesn’t do his chest physiotherapy while he’s there. He may or may not wear his life jacket in the lake. I can’t hide out in his room and check him for tics at night before he goes to bed. It’s a real faith-tester for me, but it really makes him happy. And somehow, each year, he survives camp - even without me there. Go figure.

3. Make a packing checklist for day trips or vacations.
Believe me, my packing list for our Scandinavia trip is mighty long. I have an entire suitcase devoted strictly to medicine. Every pill, liquid or cream for any possible ailment or condition is coming with me.

When you travel with chronically ill kids, think of what will keep them comfortable and safe. For day outings, pack a tote bag with everything you’ll need, and keep it close to you in the car for easy access. You may want to bring hats, sunglasses, sunscreen, bottles of water, medications or vitamins, bandages and extra shoes, snacks, tissues or wet wipes, some cash and emergency contact phone numbers.

4. Check your local newspaper for events near home.
There are many fun summertime activities for families to enjoy within a few miles from home. Just last night, my kids and I watched “The Wizard of Oz” outside on a jumbo screen. It was a perfect evening for it - no mosquitos! I never would have known about this free event if I hadn’t seen it in the paper. Every town offers a variety of activities such as concerts in the park, street fairs, festivals, carnivals, outdoor movie showings or even car races. These events can be fun for both adults and kids, and since most of them are free, you don’t have to feel guilty if you don’t stay for the entire day.

5. Talk to your child’s doctor about plans for the summer or any travel plans.
The doctor may be able to suggest certain short-term treatment options like the use of a portable device (such as an Acapella) for chest physiotherapy, rather than lugging a 30-pound compression vest along on vacation. This is what we are doing for my son, who has bronchiectasis, while in Scandinavia.

The doctor can also write a letter that you can bring along with your child’s medicine when flying on an airplane, especially if the medicine is a liquid, such as subcutaneous immune globulin or an antibiotic, and the amount exceeds the one-quart Ziploc allotment for carry-on baggage. Having this paperwork gives peace of mind in case the medication, needles, etc., are questioned by anyone at the airport or on a cruise ship.

6. Adapt your routine for the summer.
Without the need to wake early for school, many children stay up later in the summer and sleep in. But sometimes even the smallest change in routine can leave them forgetting to take a dose of medication. Try to keep a modified summer schedule, and stick to it as closely as possible to avoid any medication mishaps. Also, with the warmer weather, remember to offer your children plenty of liquids. Some medications can be hard on the liver and kidneys, and with the extra perspiration that occurs in summertime, chronically ill kids can’t afford to become dehydrated.

7. Enjoy the special moments only summer provides.
Take photos of the little things kids enjoy like running through a sprinkler or waving sparklers around on the Fourth of July. Make homemade ice cream. Take the kids fishing. Go to a parade. Whatever it is you and your child do this summer, try not to let his illness keep him from being a kid. It’s such a short season in life. Take time to stop, relax and breathe in that fresh summer air!

What about you? Does your illness or your child’s illness keep you from enjoying those things that are unique to summertime? Do you do anything differently to accommodate for your condition and work around it?

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