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Mended Little HeartGuide

Diagnosis 3 In The stop and let your child answer questions such as, “How are you feeling?”; “Is anything new happening?”; or “What medications are you taking?” (Children may not know the dosages or spelling of medications, but they may know the names.) Let your teen talk to the cardiologist and other doctors alone. Yes, we know how uncomfortable this makes you feel. Parents and caregivers can talk to the doctors after the appointment. Get teenagers used to managing their own health by allowing them to practice before they are out on their own. We know this is very difficult and that you will worry, but the goal is to raise adults with CHD who can care for themselves. Help your teen find an adult congenital heart disease (ACHD) specialist. Help your teen find an ACHD specialist and make an appointment with that specialist before your child reaches the age of 18. Better yet, have your son or daughter make the appointment. The Adult Congenital Heart Association has a listing of ACHD specialists on their website at ACHAheart.org. Teach your child how to keep and organize medical records. You may use a binder, keep scanned copies on the computer or flash drive, or use another method that works well for you. Keeping organized medical records in one place is an important part of managing care and extremely helpful when changing medical providers. It will also help your child relay the proper information to his or her adult CHD cardiologist. Transition Checklist for Parents and Primary Caregivers Check all that apply. My child… □□ Knows the name of his or her heart defect/disease □□ Knows the name of any surgeries he or Transition Checklist for Parents and Primary Caregivers Check all that apply. My child… □ Knows the name of his or her heart defect/disease □ Knows the name of any surgeries he or she had and what happened during that surgery □ Knows the names of any medications he or she takes □ Knows what his or her medications are for and when to take them □ Knows how and where to get prescriptions filled □ Understands his or her health coverage □ Knows how to contact his or her insurance company □ Has the name and contact information for his or her pediatric cardiologist □ Understands the potential impact of risky behaviors like drinking alcoholic beverages, smoking cigarettes or marijuana and using other recreational drugs □ If female, understands the risks associated with pregnancy □ Has the name and contact information for his or her adult CHD cardiologist □ Has made an appointment with his or her adult CHD cardiologist □ Has had a solo cardiology appointment with his or her pediatric cardiologist □ Understands any physical limitations he or she may have and why she had and what happened during that surgery □□ Knows the names of any medications he or she takes □□ Knows what his or her medications are for and when to take them □□ Knows how and where to get prescriptions filled □□ Understands his or her health coverage □□ Knows how to contact his or her insurance company □□ Has the name and contact information for his or her pediatric cardiologist □□ Understands the potential impact of risky behaviors like drinking alcoholic beverages, smoking cigarettes or marijuana, and using other recreational drugs □□ If female, understands the risks associated with pregnancy □□ Has the name and contact information for his or her adult CHD cardiologist □□ Has made an appointment with his or her adult CHD cardiologist □□ Has had a solo cardiology appointment with his or her pediatric cardiologist □□ Understands any physical limitations he or she may have and why Print a PDF of this list 1 General Information 2 Prenatal Hospital 4 Living With CHD 5 Forms 75


Mended Little HeartGuide
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