The Challenges

 These behavior problems may include unprovoked rage attacks, unsuccessful social relationships, and difficulties in the school/work environment. Infants and young children may miss critical developmental milestones in speech, crawling, walking, and cognitive development. Managing the challenges often requires a team of knowledgeable medical specialists including neurologists/epileptologists, neurosurgeons, neuropsychologists, endocrinologists and pediatricians.

Your team of medical specialists will be crucial in managing the obvious symptoms such as seizures - either through medications or surgery, as well as the endocrine issues such as precocious puberty and growth. Additionally, there are less clear cut issues such as behavior, cognitive challenges that impact school and work, and social interaction. These are not as easy to address with surgery or medication. It will be important to educate yourself and your family on exactly what may be directly related to the HH and the neurological impact of the lesion, and what is the result of having to live with a chronic condition that can negatively impact self-esteem and self-confidence. You may need to seek out a separate set of specialists to help manage the less clinical and more practical “Life Skills” issues.

As mentioned elsewhere in this site, behavior issues can be one of the greatest challenges many families face. Unintentional poor and sometimes violent behaviors on the part of an individual with HH are referred to as “Rages”. These are well documented but not well understood. The triggers and resulting behaviors are never the same for everyone. For some families, it makes activities outside the home very difficult and participating in a normal school or day-care environment almost impossible. A Neuropsychologist or Behavior Specialist consultation may be one of the most important visits you schedule.

As children with HH enter the school environment, it is important to understand your rights as parents and find an advocate who can support your position when requesting services you believe your child requires. While resources vary widely among states, being armed with the legal statutes and having other professionals willing to speak on your child’s behalf can be invaluable. Your child’s advocates may be individuals trained in Special Education, Physical and Speech Therapists, School Psychology, and Social Work who are familiar with the challenges your child faces.

Another common challenge for individuals with HH is dealing with social interaction. In the early years, HH kids sometimes have a hard time building friendships with peers and are more at ease with individuals either much younger or much older. As the child with HH matures, the medical challenges they face as well as the normal challenges of the teenage years can be devastating to their self-confidence. Also, if unable to drive due to seizures, teens may miss that sense of independence and may experience serious episodes of depression. It is important to seek medical advice regarding medications, but also programs designed to help them find situations where they may be successful and even thrive!

Given the rare nature of this condition, it is important for each of us to educate those around us on the complex nature of this condition. In some situations, you may also be faced with educating your current healthcare professionals about HH. At times, it may feel as if you are fighting an uphill battle. It is the goal of this organization, through this website and other programs to support families and individuals affected by HH and raise awareness about this condition. We hope that through the information contained in this website and the valuable connections that are made through the Forum, every individual with HH will live a full, productive life.