Help your child deal with feelings about the diagnosis of Chronic Granulomatous Disease (CGD). Try to understand the many emotions that children experience regarding CGD. You can help your child cope with difficult emotions by talking openly about how everyone in the family may be experiencing something similar. Providing routine and predictable times to check in with your child gives them opportunities to talk and to share, and it gives you opportunities to reassure them that their feelings are normal and acceptable.
You can ask questions in a way to get your child talking by using open-ended questions. “What kind of questions do you have?” is very different than “Do you have any questions?” You can also ask questions about specific behavior: “Lately, you have been getting angry about things that do not normally bother you. Why do you think that is?”
Finally, provide ways to help your child get rid of unhappy feelings. Some examples include using play or art to express feelings. Give your child some choices. Many children living with CGD tend to think they have little control over their lives. Children need opportunities to make choices—to have power over any part of their lives they can control. This can be done by offering the child choices whenever possible, such as what they would like for dinner, what activity they would like to do that day.
Prepare your child for the reactions of others. Children with CGD often do not know how or what to tell others about their illness and symptoms, particularly because many children with CGD can appear to be healthy. You can help by teaching your child a simple and short explanation of the diagnosis. Make sure your child is comfortable explaining what is necessary to keep well. It may help for you and your child to role-play examples of how to answer questions that others might ask and to handle any teasing that might occur. Be sure to include siblings in these discussions as well, as they often experience similar situations with their peers.
Look for role models. Although they may appear to be as healthy as other kids, children with CGD may feel different. Being around others with the same diagnosis can often help them in this regard. The Immune Deficiency Foundation (IDF) offers many ways for children and families to interact throughout the year, including family retreat weekends, patient education meetings and a national conference held every other year. You can share and ask questions on IDF’s social network, IDF Friends, www.idffriends.org. You can ask IDF to connect you with a trained peer support volunteer that has experience living with a child who has CGD.
CGD can affect your family in many ways. After diagnosis, you may experience increased worry, stress and problems with sleep or appetite, sadness, and anger. Parents may have less time for each other and for social activities they once enjoyed. Planning for fun times may be difficult due to the unpredictability of the child’s illness. And, even though children with CGD can go for long periods of time without having an infection, concerns about CGD are always there.
Siblings also may experience a wide range of emotions when their brother or sister is living with CGD. These emotions often include anger, guilt, embarrassment, sadness, loneliness, fear and confusion. Siblings may also experience jealousy if they receive less attention.
It is important to talk with children about their feelings and not to simply dismiss them thinking they will “get over it” on their own.
Families can benefit from strategies that help them to relieve stress, share responsibilities, gain support and explore emotional worries. Approaches include:
Help your child lead as normal a life as possible. To whatever extent possible, you should try to treat your child with CGD just like any other child. At the same time, you need to take into consideration your child’s health and the special needs that they have. This can be quite a balancing act, but it is important for parents to encourage their child’s participation in activities that involve other children of the same age.
Help your other children cope. A child living with CGD demands a lot of parental attention. It is no wonder that brothers and sisters often feel jealous, angry, and lonely; they may also worry about their sibling and sometimes about their parents. They also might worry that they might get CGD. You should explain the condition to your other children. Try to get them to ask questions and to express their concerns. Parents need to keep open lines of communication with all of their children. It often helps children feel like an important member of the family if they can have a part in caring for their sibling in some way. It is important for parents to spend individual quality time with each child, letting each of them know how much they are loved, valued and appreciated.
Make having fun together as a family a priority. Living with CGD may cause the whole family to be under increased stress at times. Getting support from each other may be harder during times of stress, but it is also even more important. Spend time together that is not focused on the condition and make it a priority to carve out time for whole family activities.
It is equally as important to have special alone time just for parents and even for one-on-one parent-child dates, as mentioned earlier—each parent spending individual time with each child.
For more information about programs and resources for parents and children, contact IDF via Ask IDF or 800-296-4433.