Talking to your Child
For children, telling you that they have a bleed is not always easy or fun. So many thoughts may go through their minds:
“If I tell my mom my elbow is tingly she will make me stay inside and rest.”
“I don’t want my friends to see my nose bleeding.”
“I know the teacher will make me stop playing tag if she sees me limping.”
“I don’t want to get stuck with a needle.”
As a parent, you know it is so important that your children be honest and tell you, other adult family members or teachers that they are having a bleed. Explain to them that you know it is frustrating to have to stop playing and come inside to rest for awhile. That you understand getting a dose of factor is not always pleasant. But also let them know how important it is to treat the bleed as it is happening. That keeping joints healthy means prompt reaction to having a bleed. Find inside activities for your children to do while they are resting. Games they can still play with their friends. Arts and crafts are great group activities. Ways to limit them feeling isolated or left out.
There are ways to infuse factor so that it does not hurt. Talk to the hematologist about numbing creams so that administration of the factor is no longer a reason to stay quiet about the bleed. Explain that as parents you want to allow them to have more involvement in treating their bleeds. But with that responsibility comes trusting they will continue to react and treat quickly. Reinforce the importance of RICE as a part of managing the bleed. You are all on the same team.
Many people think that people with hemophilia cannot play sports or should stay inactive in order to avoid bleeds. When, in fact, exercise and the shared social interaction is vital. Talk with your children about the sports they would like to play. Decide together how to become involved with sports they like, as well as how to protect themselves from injury while playing. It may take some time to find the right sport. Not every sport is the right fit for every person. Swimming is an excellent way to make muscles stronger without putting stress on your joints. Swimming as exercise can be incorporated with the other sports you agree upon playing together.
Remember, there are other ways to be involved with the sport they love even if you decide not play them. Talk about the appropriate protective gear they should use. Talk about using common sense in order to stay healthy as they play.