Chronic illness in children with liver disease has a tremendous impact on the child and on his/her family. Parents sometimes feel guilty, although the child's illness is not their fault. Diagnostic and therapeutic procedures can be difficult emotionally. Uncertainty in diagnosis can make things even harder. Maintaining a normal routine at home can be a challenge. It is key to establish a good working relationship with the healthcare team. It is important for the child and his or her family to communicate their medical and other needs to a trusted physician. The physician should explain problems and procedures carefully, and consider the multiple needs of the patient and family.
Support systems are so important. Family members often provide remarkable help during difficult times when children are ill. Social workers, chaplains and others can provide additional support. Sometimes identifying another parent/child who has been through a similar experience can be very helpful. Other families can be identified by your healthcare team and can also be identified through a number of Internet resources. Many institutions offer a support group for children with liver disease. It is important for parents to take care of themselves, so they can continue to take care of the child and family.