When a child is diagnosed with Chronic Granulomatous Disease (CGD), each member of the family begins an unexpected journey. The whole family must come to terms with new challenges and many experience a shift in priorities. As a result, it is a journey that may have unforeseeable turns but also many joys and rewards—a journey that can be meaningful.
Helping Your Child Understand CGD
A child’s understanding of CGD depends on where they are in terms of their cognitive development. They adjust differently to illness and family life at each developmental stage. Below is information about how children cope at different ages and how you can help your child better understand.
Infants and Toddlers (ages 0-2)
Like all children, infants, and toddlers with CGD blossom when they can enjoy healthy routines. Developing a schedule for meals, naps, playtime, and bedtime is important. Many parents find that children at this age can also become accustomed to a routine for taking their medicine. Once there is a set time for medicine, children expect it as part of their day, much like brushing their teeth or taking a bath. At age two, children with CGD may also begin to understand what is off-limits, such as digging in the dirt or playing in sandboxes. However, going to the parks, playgrounds (without woodchips), and participating in fun classes with a caregiver are fine.
During doctor’s visits or hospital stays, it is important to remember that infants and toddlers are just developing a sense of trust and security, and experiencing pain, restriction of motion, or separation from parents may be especially difficult for them at this stage. You can help by staying with your child for medical procedures and hospitalizations as well as holding, comforting and interacting with your child as much as possible. Bringing a favorite stuffed animal, a pacifier, electronic game, or blanket along to treatments may be helpful.
Preschool Children (ages 3-4)
Preschool children are ready to begin to be independent and eager to make choices. They may understand that they need to take their medication and avoid certain activities, but they don’t understand why. Children may try to challenge limits set by parents as a way to exert some control.
You can help by being firm and consistent with things your child does not have a choice over (such as taking medications, going to the doctor, etc.). However, when possible, let them make some decisions, like which medication to take first, what kind of toy that they would like to take to their doctor’s visit, or what type of snack they may like afterward. Praising your child for making positive choices about their health is also important.
When children turn three, many parents are beginning to think about preparing their children for kindergarten, and have questions about whether it is possible to enroll their child in preschool or an early childhood development program. The good news is that children tend not to put toys and objects in their mouths at this age, and this helps reduce exposure to germs in a group or classroom setting. However, it is important to remember that each child’s development and health status is different, and parents are advised to speak to their healthcare provider to determine what kinds of early childhood programs may be appropriate.
Early School Age Children (ages 5-10)
Early school age children are developing a stronger sense of control over their environment. They may have a greater understanding about their disease, but these reasons may not be entirely logical. Children in this developmental stage may believe they caused their illness by thinking bad thoughts, by hitting their sibling or by not following rules at home. At this stage, children are also beginning to notice that they may seem different from their peers.
You can help by making sure your child knows that CGD is not their fault and that they did nothing to cause it. It may also be beneficial to allow children to participate in the management of their care. For example, allowing the child to communicate with their doctor or help keep track of their medication schedule can go a long way in helping the child develop a stronger sense of control.
Parents can also help children cope with CGD and treatments by encouraging them to practice on a doll or stuffed teddy bear with a toy doctor kit. Letting the child pretend to give their teddy bear medicine, listening to its breathing, or even practice painful procedures (such as shots, blood draws, etc.) can help relieve anxiety the child may be feeling. You should participate in this play, but it is important for the child to take the lead.
Children with CGD are also beginning to attend kindergarten and participate in the regular classroom at this age. For more information on how to prepare your child for school, please go to our CGD and Attending School page.
Older School Age Children (age 11+)
Older school age children want to be more independent from their parents. Relationships with friends and social activities are exceptionally important to children of this age. Children may feel frustrated, angry and left out if they are forced to miss activities due to illness or restriction.
Children of this age may also start to struggle with not wanting to take their medicine, especially if they are feeling better. They may feel as though they do not need it any longer. While they are better able to understand CGD and its treatment, they should not be expected to react as adults do. You can help by explaining to your child how important medications can be in the management of CGD, even when they feel fine.
With the approval of your child’s healthcare provider, your child should participate in school, sports, or other activities whenever possible. Be sure to include your child in discussions with their medical team when possible. This will help children feel included and give them a greater sense of control over the situation. Listening to your child is always essential and it may be helpful to encourage your child to express these emotions through play, art, drawing, music or reading.
For more information, see the teen section of the IDF website, www.primaryimmune.org/teens and download the Immune Deficiency Foundation Patient & Family Handbook for Primary Immunodeficiency Diseases chapter titled “Adolescents Living with Primary Immunodeficiency Diseases.”
For more information about programs and resources for parents and children, contact IDF via Ask IDF or 800-296-4433.