The first thing to realize is that knowledge is power. Just as you, the parent or caregiver, will feel better equipped to handle the diagnosis as you learn more, so will your child. The more information you and your child can learn, the better you and your child will feel about your family’s ability to deal with CSID.
With that said, the type of information you relay to your child about CSID should be age-appropriate. You may explain to a 5-year-old that his/her tummy does not make the special stuff needed to break down sugars and/or starches. Tell him/her that eating foods they shouldn’t will result in a big tummy ache and require many bathroom trips. When explaining it to a 12-year-old, you will be able to use proper terms such as isomaltase and sucrase and be better able to explain digestion.
Work with your physicians, registered dietitians (RDs) and other reliable resources to give your child the best information possible. Assure your child that with proper compliance to treatment, outcomes for CSID are good. Periodically, check with your child to make sure he/she understands CSID and fill in the gaps in understanding as needed. Explanations should not stop at the time of diagnosis.
Secondly, remember that accepting the diagnosis of CSID is a process. When a diagnosis of CSID is made, there will be many emotions to contend with, some visible and some silent. Some simple guidelines for helping your child cope include:
Inevitably, your child will feel “different”. This disorder deprives your child of the privacy of blending in for most social situations. If he/she is feeling frustrated, angry, or sad, help him/her express those emotions. Your child should feel that he/she can share thoughts and feelings with you and not worry about you overreacting or becoming upset. Ask how he/she is feeling and always be available to offer a listening ear or a shoulder to cry on. Problem-solve with your child. He/she will need comforting from time to time, as he/she grieves the loss of a “carefree childhood” and faces the challenges of “being different”. Allow your child to express those emotions. Take other moments to highlight the positive aspects of having a chronic condition.
Often, children are anxious about the unknown and make inaccurate assumptions about the future. Reassure your child that in general, CSID is not a life-threatening disorder, but it is life-altering. Your child will have to be diligent about his/her diet and medication routine for the rest of his/her life. Always prepare your child for any medical procedures such as endoscopies or blood draws. This could include reading books or doing online searches explaining the medical procedures. Most people have a greater sense of comfort if they know what to expect from a situation.
Friends who are compassionate and caring regarding your child’s CSID should be sought out. Help your child maintain these relationships. Encourage your child to spend time with other children who have a chronic illness or condition. Finding another CSID child to connect your child with may prove difficult, but there are other groups of children who deal with diet restrictions on a daily basis who may offer support for your child (e.g., children with diabetes, food allergies, or celiac disease). Encouraging friendships may require you to educate the parents of other children about CSID too.
The topic of CSID should not be kept a secret because secrets indicate shame. CSID is a way of life and should thus be discussed openly. There will be days when CSID may be a topic of conversation many times, and other days where it is not mentioned at all. Follow your child’s lead in this area. At the same time, respect your child’s privacy. Explain to your child that certain people need to be informed, but respect his/her privacy if your child does not want you discussing CSID with a mere acquaintance.
When your child is feeling down about his/her diet, let him/her be sad and empathize, but also point out how having CSID has made him/her more resilient, strong, and empathetic toward others. Constantly look for instances of these qualities being displayed so that you can offer examples when your child is having a rough day. Try to instill a sense of pride in your child about his/her ability to handle CSID. Help your child discover who he or she is, separate from the diagnosis of CSID. Help your child find his/her special gifts and what brings him/her joy. Let your child have as much control as possible. Your child will have diet restrictions. You will have to supervise food choices and monitor eating habits closely. However, you can allow your child to control simple things like what type of cup he/she uses to take his/her medicine, or the type of silly straw he/she can use for a beverage. Within the allowable foods, let your child choose as much as possible. For example, if your child could have grapes or blueberries for lunch, let him decide which fruit to eat. Have a dedicated shelf in your pantry for “safe foods” that your child can choose for himself/herself. Because your child’s diet will be monitored, try to give him/her as much control as possible.
A diagnosis of CSID will have a lifelong impact on both your family’s life and your child’s life. The emotions initially felt with a new diagnosis can be very powerful. A parent/caregiver (or any family member) may feel a strong sense of protectiveness toward the child, but shielding them from the realities of life with its normal ups and downs unrelated to CSID will not serve your child well. Take time to process the diagnosis but remember that at the core, your child merely wants to discover the world around them just like other children. Try not to emphasize the negative side of CSID or talk only in terms of what he/she cannot eat or why going to a party could be difficult. There are many foods a child with CSID can eat (once tolerance levels have been established). Focus on the positives and on how to integrate a child’s limitations into a daily routine.
A child with CSID will need a monitored diet. Keeping a family schedule and routine not related to food is also important. Chores, homework, what to watch on TV, or any other daily activities need to be as normal as it would be if the child were not diagnosed with a chronic condition. Your child will eventually grow up and manage his/her own care. How well he/she manages life with CSID as an adult will be dictated by how well he/she learns to cope with it during the developmental years. Try not to make your child with CSID the focal point of the family. Your child’s chronic disorder is part of the family landscape, not the defining feature of the family.
Your child will take clues from you on how to handle life with CSID. Be honest in your emotions, but don’t lay the burden of your feelings onto your child. Model good coping techniques including seeking solid support systems, pursuing education, engaging in religious activities, exercising, and journaling. Sometimes your child just needs to hear that life with CSID is hard, but that he/she can handle it. Above all, be as positive as possible.
Because life with CSID can be difficult for children, parents/caregivers should be prepared to handle normal parenting tasks with confidence. Parents/caregivers should be able to handle an argument, set appropriate boundaries, and effectively communicate about tough issues. In the long run, nagging, yelling, bribing, lecturing, and threatening a child into adhering to his/her medical routine will not be effective.