Managing Patients with CSID from Childhood to Young Adulthood

The following is a brief overview of age-specific considerations in managing individuals with CSID. For greater insights into age-specific suggestions for CSID management, please consult the book by Cline and Green, published in 2007.1

The Infant and Toddler Years

Infants and toddlers with CSID are dependent on their parents and healthcare providers to manage their care. The healthcare team and the parents must first establish the best diet plan and any necessary medication regimens to ensure that the child’s nutritional needs are being met. Indeed, some infants and toddlers are underweight or have a diagnosis of failure to thrive before being diagnosed with CSID. It is recommended that the physician and a registered dietitian monitor the child’s growth and calorie consumption closely.

The Preschool Years

Preschoolers are beginning to develop a sense of independence. They may understand what it means to feel sick, but they may not grasp the cause-and-effect nature of how their diet affects their symptoms.1 It is important for the healthcare team to prepare parents for potential challenges, such as if the child refuses to take a medication, throws tantrums, or refuses approved foods and sneaks restricted foods. The healthcare team and parents jointly design, promote, and enforce consistent, age-appropriate, behavioral expectations for the child. Growth and development should be monitored closely, especially for a child who was underweight at the time of the CSID diagnosis.

The School Years

School-aged children are beginning to develop a sense of mastery over their environments. They can describe their symptoms and have a basic understanding of CSID. They may also begin to sense that they are different from their peers and may start to become embarrassed.1 The healthcare team can help parents determine ways to allow the child to participate in the management of their CSID. Allowing the child to make small choices related to medication administration or simple food choices between acceptable CSID-diet friendly foods may help the child feel more in control.

The Adolescent Years

Adolescents begin to develop their own identity separate from their parents during their tween and teen years. Parents who have been very involved in managing their child’s CSID may find it difficult to let go of their role as primary caregivers. Promoting self-sufficiency and responsibility is a primary goal. Sometimes the potential consequences of missing a fun activity due to gastrointestinal symptoms could be used as a tool to encourage dietary and medication adherence in an adolescent.

Emotions Surrounding a CSID Diagnosis

For all age groups, understanding the emotional factors of a diagnosis like CSID is important. Working with the healthcare team, parents can learn how best to care for their child so they don’t feel powerless, angry, frustrated, sad, or fearful. Most people do not understand the implications of having to live with a CSID diagnosis. An effective approach by the healthcare team and parents is to encourage the expression of emotions and offer ways to deal with them as they arise.

Encouraging the child to get adequate sleep, exercise regularly, pursue healthy friendships, and keep a journal regarding emotions can be helpful. If a child with CSID needs further intervention to deal with emotions, the healthcare team and parents can consider professional counseling or interacting with peer counselors with CSID experience (www.sucraidassist.com). Focusing on the positive aspects of CSID – building resilience, mastering a complicated diet, and building family closeness – can all be beneficial.

Reference

  1. Cline FW, Greene LC. Parenting Children with Health Issues: Essential Tools, Tips, and Tactics for Raising Kids with Chronic Illness, Medical Conditions & Special Healthcare Needs. Golden, CO: Love and Logic Press; 2007.