This section of the Lifespan Hemoglobinopathy Program website offers information and resources to assist you in you or your child's care journey.
If you wish to learn more about any of these resources, please contact us by email at HBprogram@lhsc.on.ca.
What should I do during a pain crisis?
If you or your child are experiencing a pain crisis, try these strategies:
- Use relaxation techniques and distraction.
- Apply warm compresses where it hurts. Never use ice or cold packs.
- Massage the area of pain.
- Drink lots of water and other non-caffeinated beverages.
- Take medicines, like ibuprofen, acetaminophen, and/or morphine as prescribed.
Sometimes a pain crisis happens for reasons beyond your control. To lower the chances of you or your child having a pain crisis, you can:
Sometimes a pain crisis happens for reasons beyond your control. To lower the chances of you or your child having a pain crisis, you can:
- Take hydroxyurea regularly.
- Drink plenty of water all the time, especially when exercising and on hot days.
- Take breaks when exercising or during strenuous activities.
- Get enough rest.
- Avoid extreme temperatures — for example, dress warmly when going outdoors in winter.
- Wash your hands often or use hand sanitizer, especially before eating.
- Get all recommended vaccines to help protect you from serious illness.
Medication management
Medication can be an important part of your or your child's treatment plan. Here are some helpful tips for managing medications:
- Most medication needs to be taken at the same time each day. Set an alarm on your phone as a reminder when medication is due.
- Plan for when prescriptions need to be refilled and renewed. Allow two weeks' notice when you need a refill of medications.
- Have your desired pharmacy fax the physician's office to refill the medication.
For younger children, incorporate play into their medication routine. Pretend to give medicine to a doll or stuffed toy with an empty syringe or cup. You may also consider offering your child a small, appropriate reward or incentive in exchange for successfully taking their medication. Sticker charts are a great reward and medication tracker.
How can I protect myself or my child from infections?
Individuals with Sickle Cell Disease (SCD) are more likely to get infections, especially bacterial infections. This is because they have a spleen that does not work well. The spleen is an important organ that helps protect against severe bacterial infections.
Fever is often one of the first signs of an infection. If you or your child have a fever, please visit the Emergency Department.
Children with SCD up to five-years-old should take penicillin or amoxicillin twice a day. Some children may need to continue taking daily antibiotics after they turn five.
Another important way to prevent infections is to receive all routine vaccinations, including annual influenza and COVID-19 vaccines. Individuals should receive additional vaccines, including the Hepatitis B vaccine, according to “high risk vaccine immunization programs and schedules” in Publicly Funded Immunization Schedules for Ontario. These vaccines can be given by your primary care provider or by making an appointment with the Middlesex London Health Unit.
Surgery and Sickle Cell Disease (SCD)
Individuals with SCD are at a higher risk of post-operation complications. All surgeries for patients with SCD should be done at LHSC and Children’s Hospital so that the LHSC Hematology Program can work with care teams before the operation to create a care plan tailored to your or your child’s specific needs.
Please contact us prior to any scheduled surgery so we can collaborate with your care team.
Sickle cell trait carrier
Individuals who have the sickle cell trait are considered to be sickle cell carriers. This means that the individual carries a certain gene that can be passed along to their children. This does not mean they have or will develop SCD. We offer counselling and education on family planning in our clinic. A referral can be placed by your primary care provider.
Newborn Screening
Screening for SCD is done shortly after birth. Positive newborn screens are referred to our clinic automatically through the Newborn Screening Ontario program.
Patients and families are not notified if they or their child are sickle cell trait carriers, and these individuals are not automatically referred to our program. You can request to view the results of your child’s newborn screening test through Newborn Screening Ontario’s Sickle Cell Carrier Results website.
Resources to assist you or your child
Translation and Interpretation Services
Please let us know the language you are most comfortable speaking. Translation and interpretation services are available 24 hours a day, seven days a week. To request these services, please speak with clinic staff or your care team.
Patient Relations
Our Patient Relations team wants to hear about your experience at LHSC. Your feedback helps the hospital identify areas of improvement.
Before contacting Patient Relations, patients and families are advised to speak with your health-care team. We encourage you to ask questions and express concerns about your care or the care of a loved one.
Your health-care team may be able to resolve your concerns and answer care-related questions right away. If speaking with your care team does not resolve an issue, please contact Patient Relations.
Visit the Patient Relations webpage.
Sickle Cell Awareness Group of Ontario (SCAGO)
Sickle Cell Awareness Group of Ontario (SCAGO) is a patient support and advocacy organization who advocates on behalf of patients and families with government, schools, and the health-care community.
SCAGO hosts various supportive programs such as Learning for Life Seminars, the Adult Peer Support Group, and the Parents Support Network, and contributes to the educational advancement of students with SCD by providing scholarships and grants.
Visit the SCAGO website.
Financial assistance
Financial assistance is available for patients and families through numerous provincial and national programs. Please contact us to learn more about these programs and whether you may be eligible to apply for support.
Children's Hospital at LHSC resources
The Paediatric Family Resource Centre at LHSC
The Paediatric Family Resource Centre offers patients and family members peer support, assistance with forms and applications, and information about children’s health from a lived experience lens.
The centre offers a variety of resources and services including:
- Support finding resources in the hospital and community;
- Peer support in a safe space;
- Parent guides about health and illness;
- Children's story books on health issues;
- Information about parent support groups;
- Internet access;
- Fax, photocopying, or scanning; and
- Phone line for use.
Visit the Paediatric Family Resource Centre webpage.
Black Health Navigator
LHSC’s Black Health Navigators are trained and registered health-care workers available to Black patients at LHSC who would like additional support navigating the health-care system. Patients and families can access this service by speaking to their care team.
Black Health Navigators can help patients and families by:
- Fostering open and effective communication channels.
- Facilitating communication of health-care needs and concerns with the goal of having needs heard, understood, and addressed appropriately by all members of the health-care team.
- Providing guidance and support to ensure that individuals have access to accurate information about their health-care options and rights.
Visit the Black Health website to learn more.
Ronald McDonald House
Ronald McDonald House Charities Southwestern Ontario provides support to caregivers and siblings of children receiving treatment at Children’s Hospital at LHSC. Caregivers who live at least 40 km away may be eligible for accommodation at Ronald McDonald House London, which offers 40 bedrooms, free parking, laundry, and meals for a $12 nightly fee. No family is turned away for an inability to pay. A hospital staff referral is required to stay.
The Ronald McDonald Family Room, located within Children’s Hospital, offers caregivers a lounge, massage chair, laundry facilities, nap rooms, and a kitchenette with snacks. It is open daily with varying hours, and caregivers can use it during the day without a referral. However, overnight stays require a referral from hospital staff, and a new referral is needed for each stay.
Visit the Ronald McDonald House Charities Southwestern Ontario website.
Child Life Services at LHSC
Child Life Services at LHSC helps children and youth thrive through adversity by protecting their emotional and social health.
Child life specialists work with patients and families to use play and developmentally-appropriate methods to empower children to navigate and gain mastery over their health-care experiences. They help patients and families prepare for medical procedures, offer opportunities to explore medical equipment, educate children about their diagnosis and medical tasks, and teach coping strategies such as deep breathing and distraction.
Specialists also offer support during and after procedures, adapt activities for children on bed rest or in isolation, and help families understand and cope with the health-care experience.
Visit the Child Life Services website.
Art Therapy at Children’s Hospital
Art Therapy at Children’s Hospital is a psychotherapy approach that creates a safe space for emotional expression, integrating evidence-based practices to support children, youth, and their families.
It provides individualized interventions that help identify stressors, develop coping strategies, reduce anxiety, enhance communication, and promote self-advocacy. The program is available across medical and mental health specialty clinics, offering individual therapy, group therapy, open art studio experiences, and bedside support. It supports both short- and long-term involvement, fostering peer support, reducing social isolation, and enhancing the clinical understanding of a patient's perspective for health-care teams.
Visit the Art Therapy at Children’s website.
Legal Help at Children’s Hospital
Pro Bono Law Ontario (PBLO) at Children’s Hospital is a Medical-Legal Partnership created to help families resolve legal problems that may prevent them from focusing their full attention on caring for a sick child.
PBLO helps low-to moderate-income families and legal guardians whose child is being treated at Children’s Hospital on an inpatient or an outpatient basis.
Your social worker will speak to you about your legal concerns, collect all necessary information and then refer your case to our on-site Triage Lawyer.
Visit the Legal Help at Children’s Hospital website.
