DIPG Patient Care at Home

If your child has been diagnosed with diffuse intrinsic pontine glioma (DIPG), your family will inevitably face some challenges while caring for him or her at home. For example, your child may have trouble taking or tolerating medicines or have problems with swallowing/eating, walking, sleeping, and other aspects of daily living. Many parents feel anxious about taking their child home after treatment. Figuring out what your child needs and how to care for your child at home can be very stressful.

You may have spoken with other parents of children with DIPGs and may have heard about some challenging situations. Although it is difficult, try not to compare your experience with any other child and family. Each child and family is special and each situation is unique.

To prepare you for caring for your child at home, this section will describe common problems you might encounter and offer advice about how you and your child can best manage these issues.