Help them grow… so they’re Good 2 Go! SICKLE CELL PROGRAM For parents Birth to 3 years old General 8 to 11 years old 16 years and up • Look for positive role models • T alk to friends about your sickle cell disease and how they might help •T hink about what you would like to do after high school and how to prepare for this • Encourage your child to be involved in activities to develop his or her interests •A sk about bodily changes you are noticing • F ind out if you will be covered by your parents’ drug plan when you turn 18 • Introduce your child to positive role models with sickle cell disease • Join camps or community programs • Talk with someone you trust about relationships and sexuality • Meet new friends by joining activities that interest you • Prepare your child to safely perform sickle cell care so he or she can visit friends on their own •P lan ahead for being away from home by demonstrating that you can safely carry out your sickle cell care • If you’re dating, decide when you are ready to talk about your sickle cell disease • Help prepare your child to talk to friends about having sickle cell disease • Become involved with the SCAGO Youth Group • Recognize your child’s increasing need for independence • Be a part of your child’s health-care team •E ncourage your child to make food choices, but continue to encourage healthy eating • Talk with your child about what he or she wants to be when he or she grows up • T ake breaks to renew your energy and learn to accept help from others •T each your child that behaviour has consequences and be consistent • Encourage your child to express needs and wants •E ncourage healthy eating habits for your child by setting a good example • Limit screen time e.g. TV, video games, computers, etc. • Take your child to playgrounds and community activities •C onnect with other families who have a child with sickle cell disease •E xplore with your child his or her feelings about having sickle cell disease and, if he or she is ready, talk about simple ways to tell others •C onnect with the Sickle Cell Awareness Group of Ontario •W hen your child visits friends, give the host parent a basic understanding about sickle cell disease • T ry to control your own stress, as children are sensitive to this and may try to hide things to avoid upsetting you 12 to 15 years old •A sk questions and keep the lines of communication open with your parents and sickle cell team • Praise your child for his or her efforts and accomplishments •R emember, your child’s sickle cell disease is not who he or she is; expect normal childhood experiences Social 4 to 7 years old For teens /youth • Keep exploring your interests in different activities • When away from home, make sure that someone you’re with knows about your sickle cell disease and what to do if you need help • Become involved with the SCAGO Youth Group Self-care •G radually assign your child more responsibilities e.g. cleaning up toys • L et your child participate in his or her sickle cell care as appropriate e.g. helping to prepare medicine •S hare responsibility for routines by making sure at least two adults can perform sickle cell care • Use distraction to help your child relax before sickle cell routines, such as singing, blowing bubbles and rewarding your child with incentives for co-operating • Allow your child to have some control over his or her sickle cell care • Set realistic expectations by helping your child understand sickle cell disease • Ask for help from your parents with your sickle cell disease care when you need it e.g. during stressful times or when you need a break • Promote healthy eating and encourage your child to take part in meal planning and preparation • Work out a plan with your parents on how to keep your sickle cell passport up-to-date • Encourage your child to wear a Medic Alert bracelet • Learn a simple way to explain sickle cell disease to teachers and other people in your life • Speak with a Child Life Specialist if your child is anxious about sickle cell treatments Education •K eep a logbook of your child’s blood results and penicillin dose •U se play activities and books to talk with your child about sickle cell disease •A sk your sickle cell team for a school resource package and discuss what to tell teachers • Teach siblings about sickle cell disease, but limit the amount of responsibility you give to them • Inform all caregivers about your child’s sickle cell disease in a simple and direct way •M ake sure your child knows the name of his or her medical condition • Communicate with your child’s school to develop a plan that ensures your child’s safety •B e honest when explaining a procedure to your child, even if the procedure will hurt •H elp your child to recognize low haemoglobin symptoms and praise him or her for communicating these to others • Look at age-appropriate sickle cell disease websites with your child • Talk to your child about upcoming clinic visits • F ind out about resources, such as the Sickle Cell Awareness Group of Ontario, Sickle Cell Association of Ontario and Camp Jumoke • As your child develops he or she can start learning more about sickle cell disease by participating in teaching sessions •A sk for help if you are unable to perform a self-care procedure. Alternative methods, such as dolls, can be used to explain a procedure • If your child is transfused regularly, educate him or her about iron overload and its complications • If your child is transfused regularly, understand the complications of iron overload • Become your own sickle cell expert by increasing what you know e.g. understand what a sickled haemoglobin is • Talk with your sickle cell team about birth control, drugs, alcohol and smoking • If you are transfused regularly, understand iron overload and its complications •T alk to someone you trust when you are feeling stressed by school or social/family pressures •P lan ahead to fit your sickle cell care into your life so you don’t miss out on anything •L earn how smoking, drugs and drinking will affect your overall health • Consider volunteer work or a part-time/summer job • T ake more responsibility for understanding your sickle cell disease by emailing or phoning your nurse for advice • Attend the Transition Day offered at SickKids to help you prepare for adult care • Ask for information on iron chelation therapy and studies • If you are transfused regularly, understand iron overload and its complications • Encourage your child to take notes in teaching sessions Medical • Encourage your child to ask questions at each visit about chelation and iron overload •W ork with your sickle cell team to adapt treatments and meal times to your child’s usual patterns •P repare for sickle cell management “what ifs” by speaking with your team e.g. what do if a penicillin dose is forgotten •E ncourage your child to speak directly to sickle cell team members at clinic appointments • Find out when you need to start seeing an ophthalmologist and have regular screening tests performed • L earn why your child’s haemoglobin target range and penicillin regimen is unique for his or her age •P lan ahead for vacations by taking extra sickle cell supplies and, if flying, get a travel letter and arrange for in-flight oxygen •P lan ahead for vacations by taking extra sickle cell supplies and, if flying, get a travel letter and arrange for in-flight oxygen • Create or update your own MyHealth Passport by visiting www.sickkids.on.ca/myhealthpassport • Be aware of iron overload and its complications •E nsure proper vaccines and medications are arranged before travelling • Continue to update your child’s sickle cell passport • Plan ahead for vacations by taking extra sickle cell supplies and, if flying, get a travel letter and arrange for in-flight oxygen •S peak with your child’s doctor about the flu shot and vaccinations • L earn why given medications are prescribed and why it is important to your child • Ask for help if unsure of certain procedures • Continue to update your child’s sickle cell passport •O btain medical clearance when travelling with medical supplies, such as needles • If you are transfused regularly, stay informed about your ferritin level and your liver iron concentrations • Continue to update your sickle cell passport •C ontinue to update your child’s sickle cell passport As your child grows, continue with the suggestions from earlier years and add new activities and responsibilities as appropriate. Consider your child’s unique developmental course and use this as a guideline. •B e in charge of your clinic appointment! Meet with sickle cell team members on your own, take responsibility for future appointments, and know your blood results and other regular screening test results. •M ake sure you have an updated MyHealth Passport by visiting www.sickkids.on.ca/myhealthpassport •B e involved in choosing your adult sickle cell team and learn how your care will change • Be in charge of your iron chelation therapy •L et your SickKids team know if you have any problems attending your first adult appointment • Celebrate your graduation from SickKids!
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