Cystinosis Parent Handbook Final - Cystinosis Research Network

On a typical day, Landon usually wakes around 8 am. I wakeone hour before to give him a medicine called Levothyroxineto keep his thyroid levels in a normal range. All of Landon’smedications are given through his MicKey button. At 8 am,I start his first bolus feed of the day, which usually takesabout one hour from start to finish. Around this time he alsotakes his first daytime dose of Cystagon ® along with threeother medications. Depending on the day, we may leaveafter this feed and go to our Mommy and Me pre-schoolprogram. We run errands, visit friends or grandparents,or just stay in the house and play.Around 11:00 am, we have lunch. Some days he eats a littlebit and other days he just plays with the food. At 12:00 pm,he goes down for a nap and starts his second bolus feedof the day and three more medications. He typically napsuntil around 2:00 pm and when he wakes, it’s time forCystagon ® and one other medication. Two days a weekhe has either occupational therapy or physical therapy.At 3:30 pm, Landon is given something to eat and at4:00 pm, we start his third bolus feed of the day and hetakes four medications. The rest of the evening includesdinner for mommy and daddy while Landon sits in his highchair and participates in dinner with us. Then we haveplaytime, bath time, stories and bed at 7:00 pm. His feedstarts at 7:00 pm along with given three medications.At 8:00 pm, he is given Cystagon ® and one othermedication. At 2:00 am, I wake to refill his formula andto give him Cystagon ® along with one other medication.He stays asleep during this time.During the feeds in which he is awake, we spend timewatching the television shows that he likes, doing puzzles,playing with toys and reading books. His feeds andmedication schedule never stop us from going anywhereor doing anything. It was a bit overwhelming at first,but now, it’s just what we do.Developmental MilestonesInfants and toddlers with cystinosis typically experienceillnesses related to electrolyte and gastrointestinalcomplications. Frequent illnesses and hospitalizations duringthis time may affect the child’s ability to reach developmentalmilestones. Although each baby develops in her ownindividual way and at her own rate, failure to reach certainmilestones may signal medical or developmental problemsrequiring special attention. If you notice (or just suspect)that your child is not reaching developmental milestones,contact your pediatrician. Your pediatrician will likely reviewdevelopment milestones at every visit. Information isavailable online at sites like babycenter.comor WebMD, or in commercially available “baby books.”Developmental ServicesAvailable to Families of Childrenwith CystinosisMost states have early intervention programs to addressthe developmental needs of children from birth up to thethird birthday; assessment and intervention is typicallyfree or low cost. Your pediatrician should be able to referyou to early intervention services in your state or you cancheck with your state’s Department of Health and referyourself. These programs typically provide comprehensive,integrated services, utilizing a family-centered approach tofacilitate the developmental progress of eligible children.Early Intervention services are designed to meet thedevelopmental needs of each child and the needs ofthe family related to enhancing the child’s development.Services may include speech, occupational and physicaltherapists, developmental educators, social workers,psychologists and nurses. In addition, early Interventionprograms may contract with consultants in areas such asnutrition, adaptive equipment, and behavior management.29Cystinosis Parent Handbook