As parents, we feel the need to control what we can control. We want our child to get better and the more helpless we feel, the more we want to try to do something. It is important the we, as parents, give our affected teen the control and the ability, within limits, to tell us what he or she needs. It is important that the teen feel that what he/she has to say is important and that we are ready to listen and act on his/her suggestions. The more open the lines of communication, the better we are able to understand what our child is going through and what he/she needs from us in addition to what the doctors say is needed. This is extremely difficult to do. Here are a few suggestions based on our experience.
CRPS affects the entire family and the family dynamic. As parents, we are stressed and the entire family feels this. Inevitably, family schedules will be altered to accommodate the multitude of doctors appointments which affects siblings. Try to make time for all family members and keep original schedules as much as possible by asking for help when needed. Keeping things as “normal” as possible will help everyone better cope with CRPS and the changes it brings to the whole family. Tell your child(ren)’s school and coaching staff what is going on so that they can watch for your other children and can possibly make accommodations for your teen with CRPS. Doing this will also help those around your child(ren) to better understand what you are going through and how they can help.
Give your teen some space. They are used to being at school, playing sports and hanging with friends. When CRPS flares occur, especially at the beginning, they probably aren’t doing any of those things. Instead, they are at home or at a doctor’s office and with you. This is a huge adjustment and can lead to feelings of depression. Allow them to be with friends and go to school even for short periods of time. This will help them to cope and feel “more normal”. Being out of their normal routine and feeling left out of their “normal” life can leave them feeling depressed. Allowing them to continue life as normally as possible will help their mental state.
Empower your teen to learn about their illness. Just like you, they want information and want to know what to expect. Allow them to research treatments, ask questions to their doctors and talk with their therapists about ways to make exercises more fun. The more involved they feel, the more likely they are to follow through on their own. CRPS is something that they are going to have to deal with for some time and finding ways to make their exercises more fun will help everyone in the long run.
Teach your teen to know and listen to their body. As time goes on, you will learn what your teen’s individual CRPS triggers are. Teach your child to recognize these and help them come up with ways to deal with them before they become problems. For example, if stress is your trigger, teach ways to manage stress through better organization, yoga and breathing techniques. You can also look at ways to adjust their school workload and create better study habits to reduce stress. If your child feels the stress in their muscles, arrange for frequent massages. If injury is your trigger, make sure to treat for pain immediately upon injury and let your child’s doctors know of their CRPS diagnosis. If a lack of sleep triggers CRPS, then make sleep a priority in your household. By recognizing your triggers, you may be able to avoid some CRPS flares.
Show “tough love” if needed. Finally, it is critical that you, as a parent, ensure that your teen is doing his or her part to get better. He or she needs to be doing their physical and/or occupational therapy exercises daily, getting enough sleep, and anything else that your doctors say will be of benefit. Hopefully, they will be doing these things on their own but, if not, you need to come up with a system that ensures that they are getting these tasks done. Reward systems typically work better than punishments or penalties.
Every CRPS case is different and it’s important that you listen to your doctors and take their recommendations. CRPS is a relatively new syndrome and is somewhat rare. New research is being conducted every day and the medical community is learning more all of the time. These are simply suggestions based on our experience as we dealt with our daughter’s illness.