The Management of Congenital Muscular Dystrophy ... - Cure CMD

8 Palliative CareIndividual and Family Emotional Well-beingPalliative care aims to provide comfort byintegrating the emotional, spiritual, developmental,and physical dimensions of life into thecare of individuals with life-threatening diseases.Incorporating palliative care from the time ofdiagnosis can benefit you, your child, and themedical team as you anticipate and makedecisions regarding interventions that affectyour child’s quality of life.Although palliative care may seem to offer abroad range of services, the goals of palliativetreatment are concrete: relief from suffering,treatment of pain and other distressingsymptoms, psychological and spiritual care,a support system to help your child live asactively as possible, and a support system tosustain the entire family. Many peopleassociate palliative care with “giving up” orwhen end of life is near. However, palliativecare is much more than that: it is a holisticapproach to treating symptoms caused byserious diseases.Pain/FatiguePain may be a significant and under-recognizedproblem that can be due to various conditionsin different systems of the body. For example,the pain arising from progressive muscleweakness, scoliosis, and contractures mayrequire adjustments with seating and splinting.Emotional and psychological aspects, includinganxiety, depression, and fear, may also contributeto pain and fatigue. The interrelationshipbetween these areas may be considerable andneeds to be explored.Effective management for your child’s pain beginswith a comprehensive assessment of acuteand chronic symptoms. Determining the presence,frequency, and duration of painful episodeswill help to identify contributing factors andthose that help provide relief.Fatigue is commonly reported by children withCMD. Activity level, respiratory status, sleephabits, and various medications may cause orworsen fatigue.27Mental HealthBecause CMD can be difficult to diagnose, withmany uncertainties about the course of thedisease, you, your child, and other familymembers are naturally at an increased risk foremotional distress; among these are feelings ofdepression, anxiety, fear, and grief.It is important to monitor the emotionalwell-being of your child. Signs of concern maybe either direct, such as sadness, or indirect,like anger or restlessness. If you have anyconcerns about your child’s mental well-being,speak with your child’s medical team aboutobtaining a supportive psychologicalconsultation and discussing helpful resourcesfor coping. It is also important to monitor youremotional well-being as a parent or caregiver.Everyone has different ways of coping withstress and emotions; it is very common forparents to have difficulty dealing with theirfeelings when it comes to pediatric chronicillnesses such as CMD. When parents andfamily members are stressed, children willalso be stressed. Oftentimes family counselingis helpful.Such consultations should help bring aboutopen discussion, relationship building, and theacknowledgement of fears, tension, and sadness.Other resources for support may include:• Internet lists and groups (for example,Facebook groups such as Merosin PositiveMums for Merosin Negative Kids andYahoo support groups for LMNA-RD,SEPN1-RM, Ullrich CMD, Bethlemmyopathy, Walker-Warburg syndrome,lissencephaly and αDG-RD)• Cure CMD website (curecmd.org),information and message boards• in-person support groups at hospitals orother agencies• Support from your faith tradition ifrelevant.These supports can help to enable you and your