Living with HH

When a person is diagnosed with a hypothalamic hamartoma, that person’s entire system of living is likely impacted. For more mildly affected individuals, the condition may pose challenges at work/school or in a marriage/relationship. When children are diagnosed, the condition may affect family dynamics with parents juggling specialty care for the child, as well as dynamics between siblings. The condition can also pose further challenges with progressive symptoms that evolve over time, and/or the onset of new symptoms. While there are some individuals that lead relatively normal lives with minor impact from symptoms, others may be impacted in ways that require lifelong care. For many individuals, the journey through life with a hypothalamic hamartoma is not static, as many challenges can develop. Along with the development of lifelong medical challenges may come financial challenges, challenges with independent living, family system challenges, and mental health challenges. The following topics are some things to consider when living with a hypothalamic hamartoma.


1. Seizures May Return

A hypothalamic hamartoma with epilepsy is a complex disorder, and for reasons unknown, seizures may seem to respond to medication management and surgical intervention for some time (days, weeks, months, or even years) before returning for some, but not in all cases.

  • If seizures do return, one course of action may be to trial-and-error different combinations of medications. This may have some impact on the more general seizure types however, for most people with HH, has not proven effective for gelastic or dacrystic seizures in the long term.
  • In some cases, surgeons may reconsider potential risks of further surgical intervention. For example, during an initial surgical case to intervene with a hypothalamic hamartoma, the surgeon may avoid a specific area, leaving some of the tumor untouched. However, if seizure activity resurfaces and significantly impacts the quality of a patient’s life, the surgeon may consider addressing more of the tumor.

2. New Symptoms and Comorbidities

Living with a hypothalamic hamartoma is a lifelong condition and individuals can experience newly developing symptoms and comorbidities at different stages along their journey.  This is especially so if seizure activity returns and continues to impact the brain and affect different areas of functioning. Studies have indicated that other conditions may be diagnosed at the same time or at different times over an individual’s lifespan. Some of those new symptoms or comorbidities may include (but are certainly not limited to) the following:


3. Other Health Concerns

Two other conditions that are not often discussed in the neurologist’s office are Post Traumatic Stress Disorder (PTSD) and Sudden Unexpected Death in Epilepsy (SUDEP). Both topics can be very difficult to talk about but nonetheless, they can be extremely important for individuals and families impacted by HH.

Post Traumatic Stress Disorder (PTSD)

PTSD can impact not only the individual with HH, but the parent, spouse, caregivers, and other members of the family. Post traumatic stress disorder can disrupt your whole life ― your job, your relationships, your health and your enjoyment of everyday activities. If you have disturbing thoughts and feelings about a traumatic event for more than a month, if they’re severe, or if you feel you’re having trouble getting your life back under control, talk to your doctor or a mental health professional. Getting treatment as soon as possible can help prevent PTSD symptoms from getting worse. Also, getting the right help for each individual might not look the same and should be a priority!

Sudden Unexpected Death in Epilepsy (SUDEP)

According to the Centers for Disease Control, approximately 1 in 1,000 people with epilepsy is at risk for sudden death due to complication in breathing and/or heart rhythm. However, SUDEP occurs more frequently for those with uncontrolled or frequent seizures, generalized convulsive seizures, seizures beginning at a young age, living with epilepsy for many years, missing doses of medicine and drinking alcohol.

Many individuals with hypothalamic hamartomas struggle to control their seizures throughout their life. It is critically important to have a solid plan to help reduce individual risk factors. In addition to a standard seizure plan (which would include no alcohol consumption, good sleep, and identification of triggers), new technology promotes better detection and recordings of heart and breathing rates, as well as erratic physical movement when sleeping. This new technology improves monitoring for caregivers and provides more independence in self-care for the individual. They can also help provide data for promoting research in understanding the biology of epilepsy and sudden death. For more information go to Seizure Alert Devices

*One important note – there are no seizure monitoring devices currently on the market that are able to detect gelastic or dacrystic seizures.

For more info on SUDEP and your individual risk go to: SUDEP Institute


4. Financial Concerns

A diagnosis of a rare condition such as a hypothalamic hamartoma often results in multi-disciplinary care and the team required to support the individual throughout their lifespan may involve many specialties and costly therapies. Families worry about not only health insurance coverage for expensive medications and surgery, but missing work or having to give up a career to be home to take their loved one to doctor’s appointments and therapies. In addition to worrying about monthly bills and expenses, there are often concerns about how to prepare for the long-term financial well-being of the individual. This could mean setting up a special needs trust and ensuring the individual is eligible for government benefits. For more detailed information on financial support, please visit Financial Information.


5. School and Transition

Similar to an individual’s medical team, a specialized set of professionals will be available to support diagnosed individuals in school and throughout all of the student’s transitions from early intervention, to grade school, middle school, high school, and preparing for independent life after high school. School systems also offer multidisciplinary teams to assess the needs of individuals and help to determine how their symptoms are impeding their school performance and to offer support to make progress.

School Age Challenges

When diagnosed with a hypothalamic hamartoma, the list of challenges that school age children may face is long and may include (and is not limited to):

  • Executive functioning deficits (especially short-term memory deficits)
  • Epilepsy
  • Intellectual functioning
  • Social interaction
  • Behavior functioning
  • Anxiety
  • Fatigue
  • Vision
  • Post-traumatic stress disorder
  • Bullying

Any information related to a student’s hypothalamic hamartoma and how it’s symptoms and comorbidities may impact an individual’s ability to function in a school setting, should be shared with the school.  Based on federal and state laws, every public school has educational teams in place to assess a student’s ability to access their education. When symptoms of a condition, such as a hypothalamic hamartoma, impede a student’s ability to access their education, a student may be eligible for differing levels of support services.  A student’s eligibility for support services is based on a disabling condition, as well as how much of an impact the symptoms of that condition have on a student being able to access their education. The school’s educational team will assess how much the symptoms are impacting the student’s ability to access their education, as well as if the student is able to make meaningful progress when compared to their same age peers. Students whose symptoms are slightly impeding and may only need a few accommodations to make meaningful progress in the classroom environment, may be eligible for a 504 Accommodation Plan. Students whose symptoms render a clinically significant impact in their ability to access their education and make meaningful progress, may require an Independent Educational Plan (IEP).  Both documents are legally binding. However, the difference between the two levels of support includes the alteration of the curriculum to meet the needs of a student with specialized instruction, with regards to an IEP.  Students that require a great amount of educational support may remain in school until the age of twenty-one.  The IEP team is required to assist the student and family with a transition plan for work and/or personal care during the student’s post-secondary years. For more information on how to best advocate for your child’s rights go to and     

Transition of Care

Before a young adult graduates from high school, and well before their eighteenth birthday, the family of a patient with a hypothalamic hamartoma is in need of planning for the future in terms of medical care, employment, and independent living.  This transition period will be a few years in the making.  Around age of 18-22, families will be required to transition their medical care from pediatrics to adult primary and specialty care. In terms of employment and independent living, families will need to determine the individual’s level of functioning and ability to complete everyday tasks independently.  Families will need to determine if the individual will be able to earn a living, express themselves verbally, perform self-care, and live independently of the care of others.  If an individual is not capable of living independently, the family (or trusted person) may need to seek legal guardianship of the individual. These individuals will need the highest level of care in adulthood.

A great place to start on the path to transition of care is with the Child Neurology Foundation.

For more detailed information, visit our Adults with HH page.


6. Impact on the Family

When an individual is newly diagnosed, no matter what the person’s age, the impact on the family system can be significant. If you are a parent of a child that has been diagnosed with a hypothalamic hamartoma, you may be seeking how to support your child. You may be seeking what is the recommended wording on how to inform and educate all children in the family about the diagnosis. Understanding how to support oneself as a caregiver, spouse, or even the person receiving the diagnosis will be important to the entire family system that is being challenged by the diagnosis. Visit our Impact on the Family page for information and suggestions that are offered for each member of the family:

  • Caring for a highly affected individual with HH
  • Caring for children
  • Young Adult or Adult Self Care
  • Caring for Siblings of Diagnosed Children
  • Additional Coping Strategies for Siblings
  • Spouses/Partners of Adults with HH

7. Get Support

Nobody chooses to go through such challenging situations, but when life throws us curve balls, many realize that they have a deep reserve of strength that they never thought they could find. It is often most helpful to find others who are experiencing the same type of journey. Hope for HH provides the following opportunities: