Comprehensive Care Hemophilia

3Comprehensive Carefor Hemophilia■Why do you need to register your child at ahemophilia treatment centre?It is very important that you register your child at a hemophiliatreatment centre, even if he gets most of his routine health careclose to where you live. Going to an HTC at least once a year willallow your family to:“I wasn’t surewhat to do. Therewere too manydecisions to make.The support of ournurse at the clinichelped us calmdown and deal withour son’s health.Our family doctorjust didn’t knowenough about it.We needed theclinic team.”• Get correct information about hemophilia fromthe comprehensive care team.• Get blood tests that can only be done by aspecialized coagulation lab.• Have access to the newest treatments forhemophilia.• Find out about the latest research on hemophilia.• Make sure your child gets a comprehensive“hemophilia check-up” regularly.Most children with hemophilia have a check-up at the HTC every6 to 12 months. How often your child goes will depend on howsevere his hemophilia is, and how often the care team wants tosee him for an assessment. Having check-ups at the HTC is veryimportant to your child’s care. As your child grows, his plan ofcare will change to meet his evolving needs.When he visits the HTC, the care team will review his history ofbleeds and treatment plan. The team will want to know howmany bleeds he has had and how much clotting factorconcentrate he has infused since his last visit. You will need tokeep record in a home infusion diary — this is very importantbecause having accurate records of his bleeds and treatments willhelp the team decide if he is getting the right amount andfrequency of clotting factor. The check-ups are also a good time toAll AboutHemophiliaAGuideforFamilies3-3