Cystinosis Parent Handbook Final - Cystinosis Research Network

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Medication Appearance PurposePrednisonePrevents organ rejectionPrilosec ® (Omeprazole)Treats/prevents stomachulcer/heartburnPrograf ® (Tacrolimus)Prevents organ rejectionProtonix ® (Pantoprazole Sodium))Treats/prevents stomachulcer/heartburnReglan (Metoclopramide)Speeds up stomachemptyingRocaltrol ® (Calcitriol)Treats calcium loss from the boneSodium BicarbonateAntacid that neutralized stomach acidSynthroid ® (Levothyroxine sodium)Replaces thyroid hormoneUrocit-K (Potassium Citrate)Electrolyte supplementVitamin B-ComplexTreats Vitamin B deficiency/may helpwith Cystagon ® odor Multi-VitaminZofran (Ondansetron)Used to combat nausea andvomiting16Cystinosis Parent Handbook
Page 2 and 3: ContentsUsing This Handbook........
Page 6: FINDING SUPPORTBuild a Support Netw
Page 10 and 11: Living with Cystinosis: Landon’s
Page 12 and 13: TREATMENT OF CYSTINOSISCystinosis i
Page 14 and 15: Nutrition: Replacements,G-Tubes, J-
Page 16 and 17: Common Medications for People with
Page 25 and 26: Organizing and StoringYour Child’
Page 27 and 28: CYSTINOSIS HEALTH JOURNALJean Blum,
Page 29 and 30: It is very important to provide a n
Page 31 and 32: On a typical day, Landon usually wa
Page 33 and 34: Medications, Nutrition, and G-tubes
Page 36 and 37: Federal law mandates that children
Page 38 and 39: School IssuesUnderstanding cystinos
Page 40 and 41: on the weekends and many play dates
Page 42 and 43: School Issues and TransplantHonesty
Page 44 and 45: Older adolescents,Ages 15 - 18Older
Page 46 and 47: Mental HealthFor TeensBeing a teena
Page 48 and 49: Checklist of Tasks and Expected Age
Page 50 and 51: Transition to YoungAdulthood and Be
Page 52 and 53: Caring for Your MarriageCystinosis
Page 54 and 55: Citations1. Encyclopedia of Childre
Page 56: 302 Whytegate CourtLake Forest, Ill

Cystinosis Parent Handbook Final - Cystinosis Research Network

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