Cystinosis Parent Handbook Final - Cystinosis Research Network

Early Childhood, Ages 3 - 6According to Piaget, children aged 3 - 6 are in thepreoperational stage of cognitive development. [21] In thisstage the child’s memory and imagination are strong. Theyare very good at using symbols as evidenced in imaginativeplay. They may pretend to be mommy or daddy, or to ride abroomstick “horse.” You can encourage them to play withdolls or animals and to be the individual or the doctor. Theymay also have strong attachment to a special toy or blanketthat they will want with them when they are going to bed,an appointment, or the hospital.Piaget notes while their language skills increase and matureat this age, they cannot think in a concrete logical way(though they will be learning how to argue with you!). Manytimes their reasoning is magical not logical. They tend to seethe world only through their own point of view (egocentric)and lack the ability to see it from anyone else’s. [21]An important part of parenting any child is of courseinstilling compassion, respect, and concern for others.Your expectations of behavior should be no different foryour child with cystinosis.Explaining Cystinosis to PreschoolersTo explain cystinosis to a preschooler, it is best to keep itsimple, age-appropriate for the child’s cognitive level, andhonest. Children need to know they did nothing to causecystinosis, but also that it will not go away. They need toknow the medicines will help them feel better and keepthem from getting sicker. They can be shown where theirkidneys are and how kidneys help clean the blood (sincethey will be hearing about the kidneys at medical visits).They can understand how good nutrition (however they getit) is important to help them grow and be healthy. Siblingsor playmates need to know that they cannot “catch” it likea cold or the flu.Explaining Cystinosis:SERENAWe were honest with all family andfriends at the time of our daughter’sdiagnosis. The doctors told us thatchildren with this condition didn’t livelong. They told us to go home andenjoy the time we had left with her.She was 18 months old. We knew littleabout cystinosis back then, and thereSerena, age 4.was no support.We had an older child who was five years old when Serenawas diagnosed and we were always open and honestand discussed things with the kids each step of the way.I remember meeting a child with cancer at the kids’ hospital.When I chatted to the parent later they said the childdoesn’t know they have anything wrong with them.I remember thinking “ you have to be joking.” That childknew he was sick. They understand more than we givethem credit for sometimes.Serena, age 30. Serenawas seven years oldwhen she received herkidney transplant fromher mother.Honesty is the best way to go. If youtry to hide things they know it and Ibelieve you will lose their trust. Thingscan be explained simply when they arelittle. Something along the lines of: youhave this condition called cystinosisand you have to have special medicinethat other kids don’t have. This is tokeep you healthy. Some of them youwill hate, some taste and smell terriblebut if you don’t have these medicines(or injections) you will get really sickand could die. We want you to stay ashealthy as possible. We really wish you didn’t have to takeall of this stuff but there are 2,000 other kids in the worldwith cystinosis who have to have the same medicines everyday and we might be able to meet some of them if youwould like.30Cystinosis Parent Handbook