Life with HH is as complex as with most rare and unknown diseases. Families report a common theme of loneliness, fear, isolation, judgment, and blame. When we bring our newborns home the joyous emotions are overwhelming. Whether or not this is our first or last child, the presence of this new person in our home creates new dynamics.

Once you have a diagnosis of HH, the spontaneous laughing or crying and moodiness may begin to make sense. Many parents do a lot of thinking about the past and putting two and two together. You question whether what you thought was tiredness, colic, laughter, or happiness was really HH.

Life does change with HH and there are ways to survive. Once families realize that change must take place, and then the first step has been taken!

Depending on the age of the child or adult diagnosed, some considerations include:

  • Identifying knowledgeable doctors in a wide variety of specialty areas
  • Making and keeping ongoing doctors’ appointments
  • Administering, monitoring and adjusting daily medications
  • Reviewing and adjusting health care and insurance plans
  • Revising financial budgets for medical and other expenses
  • Providing HH and seizure education and training to family, friends, school staff, activity providers, and others coming into contact with the HH patient, including an emergency response plan (What do we do if seizure lasts too long/ Who do we call?)
  • Recognizing changes in the child/adults moods and behaviors. Teach family members how to handle all mood swings especially those considered extreme (depression or rages)
  • Changing work status and schedules to accommodate the needs of the HH individual or absences from school
  • Obtaining appropriate childcare (What happens if they are sick for long periods of time?)
  • Adding or eliminating special dietary foods and supplements to assist with symptoms (Does this mean the whole family must change?)
  • Addressing school issues and educational concerns (IEPs, safety plans)
  • Traveling for vacations or other trips means researching local hospitals, medical plan rules, local doctors and facilities to accommodate emergency needs
  • Figuring out the best way to participate in family, friend and other social gatherings (Do we go? / Do we stay or leave early?)
  • Recognizing the need for additional professional, holistic, medical, mental health, or religious assistance

By now you may be feeling overwhelmed. There are however other areas that need to be addressed. As we adjust to this new way of life at times we forget ourselves, spouses/ significant others and other kids.

  • Siblings’ needs: Making sure that the needs of the other kids in the family are being met. No matter how hard we try, if there are other kids they feel the changes and the increased attention given the HH child/adult. Try to maintain as close to a “normal” routine for the other kids. Remember to explain each change as it happens using words that can be understood based on age of child or children.
  • Spouses/Significant Others: Life with HH brings stress. Families have said that sometimes it’s just talking and listening that is needed. Other times it is a short break away from things, or professional help.

Some families have described living with HH as a ride at an amusement park. The ups and downs, twist and turns are there, the question is when are they coming and what do we do.