Cystinosis Parent Handbook Final - Cystinosis Research Network

Building Bridges• Focus on creating confidence, resilience, and buildingstrong communication skills.• Set standards for independence.• Having a disease such as cystinosis can alter a child’sself-confidence and self-esteem. It is important that thechild feels good about themselves as a person and isproud of who they are.Building Self ConfidenceSelf-confidence means having a positive and realistic opinionof yourself and being able to accurately measure yourabilities. Having cystinosis can and sometimes does interferewith your child’s ability to participate in activities as their peersdo. Self-confidence can help your child to think positivelyand deal better with the daily stresses of having cystinosis.But remember, some of the self-doubt of adolescence helpsteens figure out who they are and what they care about.Below are several ways to help your child buildself-confidence:• Recognize your child for doing a good deed, doingwell at school, or completing a goal.• Point out their strengths.• Spend quality time with your child on an activity theyenjoy (even if it’s not YOUR favorite!)• Applaud your child’s effort to improve.• Practice positive reinforcement.• Listen to your child when he or she speaks. Do not askthem yes / no questions. Ask them open-ended questionsand give them time to answer. Let them know they arebeing heard.Living with Cystinosis:Kacy’s StoryKacy was considered a latediagnosis at four years old.She certainly had symptoms:including failure to thrive(beginning around 11 months),extreme urination and thirst,constipation, and protein inher urine (occasionally). Butshe never suffered from anygastrointestinal issues, ate normally, and had the energyof any normal four year old. We were having her tested forgrowth hormone deficiency, which required a 12-hour fast,which sent her into severe dehydration and a two-weekhospital stay. That event, and the eye exam, led to her beingdiagnosed with cystinosis.The most difficult time for us was during the first year. Shecame home from the hospital with a G-tube and five differentliquid medications. We hydrated her overnight with a pumpand managed to find a new normal. She never really blinkedan eye. She went back to her normal activity and energylevel, returned to preschool, and her health stabilized quitequickly. She began to grow on a normal pattern, although farbelow her age group because of the late diagnosis. Duringthe spring of her eighth year we switched her over quite easilyto all oral medications and in the fall of that same year sherequested to have her G-tube removed. It has been a yearsince that occurred. We only get nervous when she contractsthe stomach flu, which she has twice since her G-tube wasremoved. Both times we managed her care at home with nohospitalization.A typical day for Kacy starts at 7 am with a wakeup call and½ of her morning medications (six pills). She usually goesback to sleep for an hour and wakes for the day at 8 am,finishes her morning meds (7 pills) and an eye drop beforeshe heads to school at 9am. At school she gives herself 3eye drops at 10 am, 12 pm, and 2 pm. At 2 pm she alsotakes eight pills. She comes home at 4 pm, takes two ironpills and another eye drop. At 8 pm she takes her eveningmedications (12 pills), another eye drop and her growthhormone injection. Bedtime usually comes by 9 pm.Kacy swims competitively three days per week for an hourand dances two days a week for an hour. Swim meets follow37Cystinosis Parent Handbook