There are three types of juvenile arthritis: pauciarticular, polyarticular and systemic juvenile arthritis. The distinction has to do with the number of joints affected and whether or not there are fever and rash. Regardless of the type of juvenile arthritis, kids have one thing in common, besides their primary goal of getting well. They all want to be as normal as possible. They don't want to miss out on anything their friends are doing because they are "sick". Missing out is almost more distressing than the disease itself.
Normalcy is as important for the emotional well-being of kids with juvenile arthritis as treatment is for their physical well-being. This can be a tough issue for parents. When they see their young child in pain and struggling with physical limitations, instinctively, parents want to protect their kids. They may be tempted to hold them back from certain activities. But holding kids back may be the wrong thing to do.
Halloween is a perfect example of the dilemma. It's one day out the year. Kids start looking forward to it as summer temperatures wind down and school starts up. To have to miss Halloween would really ding a kid's self-esteem. They would have no answer when asked "what are you going to be this year" and no plan for beating their friends at bagging the most candy. Instead, they would be angry and frustrated at what juvenile arthritis steals from them.
There will be kids who have to miss out. Perhaps they are newly diagnosed and the disease is not yet well-controlled. Perhaps they are in the hospital. But aside from such circumstances, kids with juvenile arthritis can enjoy Halloween and not risk injury or a flare of symptoms if they plan ahead and prepare for their night of ghoulish fun. The following suggestions should allow parents and kids to take some of the worry and stress away by being mindful of juvenile arthritis but not letting the disease become a spoiler. Any of the suggestions can and should be modified depending on the age of the child and their physical ability.
Parents should refrain from being overprotective. While it is difficult to see your child in pain, remember there is an even deeper pain that comes from not being like the other kids. Feeling different may be the most deep-rooted pain of all. Since it's natural to want to protect your kids, how can you hold back on becoming overprotective? Keep in mind, being able to go out for Halloween will boost your child's spirit and attitude. It will ease their pain and your reward will be their precious smile.
Make adjustments to prepare for Halloween day. In anticipation of the big day, have your child rest the day or two before. Perhaps a temporary adjustment of their medications would be helpful too -- but don't adjust medications without first discussing the plan with your child's doctor. The point is, you should plan for the extra activity, if possible.
Choose a reasonable route. If walking is difficult for your child, keep the distance they will be walking within their limits. Also, pace out the activity so it does not become overwhelming. Consider taking breaks. Come back to the house, and after a rest period, go out again.
Help tote the candy. Your child may have difficulty carrying the candy, especially once the accumulation becomes impressive. Have your child carry a smaller bag or candy tote while you carry a larger one. Pour the small into the large tote periodically to lighten their load.
Have your child dress warmly. This suggestion is simple. Cold or inclement weather can increase joint pain and stiffness. Keep joints warm. Layer clothing underneath their costume.
Talk to the parents of their friends. Especially if you will be going out in a group, make sure other parents are aware of your child's situation -- if they aren't already. The extra camaraderie that will come from making every one aware will only enhance the experience.
Childhood Arthritis. Centers for Disease Control and Prevention. Updated August 1, 2011.