sickle cell program · as your child grows, continue with the suggestions from earlier years and...

Help them grow… so they’re Good 2 Go!SICKLE CELL PROGRAM

For parents For teens/youth

Birth to 3 years old 4 to 7 years old 8 to 11 years old 12 to 15 years old 16 years and up

Gen

eral

• Remember, your child’s sickle cell disease is not who he or she is; expect normal childhood experiences

• Be a part of your child’s health-care team

• Take breaks to renew your energy and learn to accept help from others

• Encourage healthy eating habits for your child by setting a good example

• Praise your child for his or her efforts and accomplishments

• Encourage your child to make food choices, but continue to encourage healthy eating

• Teach your child that behaviour has consequences and be consistent

• Limit screen time e.g. TV, video games, computers, etc.

• Recognize your child’s increasing need for independence

• Talk with your child about what he or she wants to be when he or she grows up

• Encourage your child to express needs and wants

• Encourage your child to be involved in activities to develop his or her interests

• Ask questions and keep the lines of communication open with your parents and sickle cell team

• Talk to friends about your sickle cell disease and how they might help

• Ask about bodily changes you are noticing

• Look for positive role models

• Keep exploring your interests in different activities

• Think about what you would like to do after high school and how to prepare for this

• Find out if you will be covered by your parents’ drug plan when you turn 18

Soc

ial

• Introduce your child to positive role models with sickle cell disease

• Prepare your child to safely perform sickle cell care so he or she can visit friends on their own

• Help prepare your child to talk to friends about having sickle cell disease

• Join camps or community programs

• Meet new friends by joining activities that interest you

• Plan ahead for being away from home by demonstrating that you can safely carry out your sickle cell care

• Become involved with the SCAGO Youth Group

• Talk with someone you trust about relationships and sexuality

• If you’re dating, decide when you are ready to talk about your sickle cell disease

• 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

Sel

f-ca

re

• Encourage your child to wear a Medic Alert bracelet

• Set realistic expectations by helping your child understand sickle cell disease

• Promote healthy eating and encourage your child to take part in meal planning and preparation

Educ

atio

n

• Use play activities and books to talk with your child about sickle cell disease

• Inform all caregivers about your child’s sickle cell disease in a simple and direct way

• Be honest when explaining a procedure to your child, even if the procedure will hurt

• Talk to your child about upcoming clinic visits

• Ask for help if you are unable to perform a self-care procedure. Alternative methods, such as dolls, can be used to explain a procedure

• Ask your sickle cell team for a school resource package and discuss what to tell teachers

• Make sure your child knows the name of his or her medical condition

• Help your child to recognize low haemoglobin symptoms and praise him or her for communicating these to others

• Find out about resources, such as the Sickle Cell Awareness Group of Ontario, Sickle Cell Association of Ontario and Camp Jumoke

• If your child is transfused regularly, educate him or her about iron overload and its complications

• Teach siblings about sickle cell disease, but limit the amount of responsibility you give to them

• Communicate with your child’s school to develop a plan that ensures your child’s safety

• Look at age-appropriate sickle cell disease websites with your child

• As your child develops he or she can start learning more about sickle cell disease by participating in teaching sessions

• If your child is transfused regularly, understand the complications of iron overload

• Encourage your child to take notes in teaching sessions

• Encourage your child to ask questions at each visit about chelation and iron overload

Med

ical

• Work with your sickle cell team to adapt treatments and meal times to your child’s usual patterns

• Learn why your child’s haemoglobin target range and penicillin regimen is unique for his or her age

• Speak with your child’s doctor about the flu shot and vaccinations

• Learn 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

• Be 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.

• Make sure you have an updated MyHealth Passport by visiting www.sickkids.on.ca/myhealthpassport

• Be involved in choosing your adult sickle cell team and learn how your care will change

• Be in charge of your iron chelation therapy

• Let your SickKids team know if you have any problems attending your first adult appointment

• Celebrate your graduation from SickKids!

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.

• Take your child to playgrounds and community activities

• Connect with other families who have a child with sickle cell disease

• Connect with the Sickle Cell Awareness Group of Ontario

• Let your child participate in his or her sickle cell care as appropriate e.g. helping to prepare medicine

• Share responsibility for routines by making sure at least two adults can perform sickle cell care

• Keep a logbook of your child’s blood results and penicillin dose

• Explore 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

• When your child visits friends, give the host parent a basic understanding about sickle cell disease

• Try to control your own stress, as children are sensitive to this and may try to hide things to avoid upsetting you

• Gradually assign your child more responsibilities e.g. cleaning up toys

• Consider volunteer work or a part-time/summer job

• Take 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

• Talk to someone you trust when you are feeling stressed by school or social/family pressures

• Plan ahead to fit your sickle cell care into your life so you don’t miss out on anything

• Learn how smoking, drugs and drinking will affect your overall health

• 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

• Work out a plan with your parents on how to keep your sickle cell passport up-to-date

• Learn a simple way to explain sickle cell disease to teachers and other people in your life

• 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

• Prepare for sickle cell management “what ifs” by speaking with your team e.g. what do if a penicillin dose is forgotten

• Plan ahead for vacations by taking extra sickle cell supplies and, if flying, get a travel letter and arrange for in-flight oxygen

• Ensure proper vaccines and medications are arranged before travelling

• Obtain medical clearance when travelling with medical supplies, such as needles


• Encourage your child to speak directly to sickle cell team members at clinic appointments


• Be aware of iron overload and its complications


• Find out when you need to start seeing an ophthalmologist and have regular screening tests performed

• Create or update your own MyHealth Passport by visiting www.sickkids.on.ca/myhealthpassport


• If you are transfused regularly, stay informed about your ferritin level and your liver iron concentrations

• Continue to update your sickle cell passport

• 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

• Speak with a Child Life Specialist if your child is anxious about sickle cell treatments

sickle cell program · as your child grows, continue with the suggestions from earlier years and...

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