Finding Care for a Child With Hemophilia

• Try not to be overprotective. Like other children, your child needs to explore the world.
• Turn to people in the hemophilia community for help, guidance, and support.
• Join a support group to meet other families dealing with hemophilia. A sibling support group may even be available.
• Don’t be afraid to speak to a healthcare professional about the added stresses in your life and how they are affecting you and your loved ones.
• Be proactive. Go to your child’s teachers, coaches, camp counsellors, scout leaders and daycare providers, and talk with them about the challenges before they come to you with problems.
• Be willing to explain hemophilia. It is a rare disease. Most people know very little about it.
• Work on having a positive attitude. This will help your child and those in your child’s life.

Professional Daycare

The search for quality care for a child with hemophilia can be made easier by determining your specific needs as well as those of your child. What should you look for in selecting a childcare centre? Here are some tips:

• Ask other parents who have a child with hemophilia about the daycare they’re using.
• Visit the daycare facility or homecare residence more than once before selecting one.
• Look around for safety concerns, caring providers, good nutrition.
• Trust instinct – yours and your child’s.

Babysitting

Anyone taking care of your child with hemophilia will need to know about day-to-day care and emergency plans.

Here are some tips on what to review and share with your babysitter:

• Share hemophilia resource material – books, brochures, videos, website – with care providers so that they are informed and made more knowledgeable about caring for a child with hemophilia.
• Always leave up-to-date contact information for yourself, your child’s doctor, and your HTC.
• Treat a bleed quickly and completely following the R.I.C.E. technique:
• Rest: use the joint as little as possible.
• Ice: put ice on the injured area for ten to fifteen minutes, every one to two hours, to control swelling and reduce pain. Remember not to apply the ice directly to the skin, cover the ice pack with a cloth or towel to avoid frostbite.
• Compression: apply pressure to the joint or muscle bleed by using an elastic bandage to help slow down the bleeding. A tensor bandage will also help keep the joint stable, but remember to remove the tensor prior to going to bed.
• Elevation: Remember to elevate the limb (above your heart) to avoid blood tracking down to your hands or feet. This will help slow down the bleeding and reduce swelling and pain.