Tips for parents

Raising a child with a blood disorder isn't easy, but here are some suggestions to help your child enjoy a normal childhood.

Quality-of-life suggestions

Become educated and know all the treatment options and what to do in emergencies. Arm yourself with as much information as possible.
Have your child wear a MedicAlert^® bracelet. There are several new sporty bracelets, dog tag necklaces and shoelace tags available. Small children can even wear a MedicAlert bracelet around their ankle.
Always remember, "Kids will be kids." Try not to constantly hover over your child. Relax and let your child enjoy being a kid. You can always infuse if an accident happens.
Exercise is a must to keep joints and muscles in shape. Nothing is worse than being overweight and out of shape; it makes it that much harder to find a good vein to infuse.
Don't forget to take care of yourself! Have some quality time alone. Go on a date with your significant other.
Understand that hemophilia should be part of your life, not the main focus.

Popsicles are great for mouth bleeds -- even after you have infused.
Always have a dose of factor in your refrigerator. Even if you don't know how to mix your factor, keep it on hand in case you need to infuse. Remember, Walgreens nurses are available all day every day. If you have to run to the emergency room, bring your factor and you won't be waiting for it from the hospital pharmacy.
When your child gets a bruise and you can feel the hematoma (bump), use a pen to mark the edges of the bruise so you can tell if it is getting larger. When you talk to your hematologist, he or she will ask the bruise size (the size of a nickel, quarter, etc.) and if it's expanding.
If your child suffers a joint bleed, use a flexible tape measure to measure the circumference of the joint daily. You can better monitor the bleed by comparing the joint to the size of the unaffected joint.
When in doubt, infuse. The short-term pain from infusion is minimal. An extra infusion will not only help avoid a future bleed, but will also give you peace of mind.

Please note: MedicAlert^® is a registered trademark of the MedicAlert Foundation.