Impact on the Family

When individuals are diagnosed as children, caregivers may struggle with what to say or how to answer the child’s questions.  It is recommended that the child’s questions be answered as honestly as possible, in an age-appropriate manner, with acknowledgement and empathy.  For example, “I know this sounds scary. Sometimes when kids have a tumor in their head that is not supposed to be there and causing problems, the doctors need to remove it.” For some children, explaining their journey to their friends is a helpful way of coping.  It’s helpful for the children to become a part of their team and when possible, give them choices about their treatment.  For example, have them help keep track of their seizures or challenging behaviors, either with sticker charts or other modes.  Another suggestion may be to perhaps have them identify their feelings about the situation on a scale from 1-10.  This may sound like, “You were pretty mad when that happened, what number would you give that feeling?” The key is to make them feel like they are involved at whatever level possible. For children with rage behaviors, this will obviously be much more challenging.

When diagnosed as a young adult or adult, an initial goal is to understand their own symptoms and how to advocate for themselves. Often times, adults living with HH speak of fatigue, short-term memory loss, slow processing, and limited frustration tolerance as symptoms that often interfere with their day-to-day living.  Individuals with these symptoms will want to understand strategies and techniques that may help them improve their ability to endure living with these symptoms.  For example, a young adult may want to understand their Individual Education Plan and/or 504 Plan and what type of work or career path would be a realistic goal.  Many post-secondary schools offer assistance to individuals with educational accommodations to help advancement into the world of employment. A job coach or vocational assessment will be helpful in determining interests and realistic expectations.  For example, someone who is slow to process and easily fatigued, may not be capable of a long shift incapable of providing for breaks.

Self-care for young adults and adults that have been diagnosed with a hypothalamic hamartoma will start by understanding oneself biologically and meeting his/her own needs.  For example, sleep will be an important part of an individual’s self-care to improve levels of fatigue, and also to decrease risk of seizures, if that symptoms applies. Another risk factor may be stress levels, therefore, management of stress by way of exercise, meditation, or even counseling may be beneficial.  Young adults and adults may wish to seek support for limited frustration tolerance and support in their relationships.  This could be formally through a therapist or counselor, or informally by meeting others with the same symptoms, such as on-line. Many individuals find that speaking with someone with similar difficult experiences helps to reduce isolation and improves a person’s ability to cope with a symptom or situation at hand.  Hope for HH has begun hosting Meet and Greets events to help others connect. Stay tuned to our social media for the next scheduled events.

Often times, parents and caregivers worry about the siblings of children diagnosed with a hypothalamic hamartoma. In addition to the medical complications, loved ones with HH often demonstrate significant challenges with frustration tolerance that often manifests in ‘rage.’ Parents and caregivers are recommended to listen to the siblings of the diagnosed person with empathy and acknowledge the sibling’s feelings. For example, “Yes, I know today was hard and it wasn’t fair that you had to go to your room while your sister/brother was mad.” Siblings may experience resentment and jealousy at moments in time, however, they often want to help and are quick to learn compassion and self-sufficiency. Parents or caregivers may want to schedule special one-on-one time with each sibling to balance the attention that is needed for the child with a hypothalamic hamartoma. During one-on-one time, parents are encouraged to share their feelings about the situation, so that the sibling becomes aware that they are not alone and someone is feeling the same. Parents are also encouraged to be aware that there is a balance and limit of sharing their feelings, to not overwhelm the sibling with worry. Often times, the siblings of children diagnosed with a hypothalamic hamartoma may worry about their parents just as much as their sibling. It is recommended to let the sibling ask questions, and then the parent follow up with a clarifying question to be sure that they don’t provide too much unnecessary information.

Siblings often feel relief when they know how to help their sibling that has been diagnosed.  Therefore, the family may want to consider an age-appropriate job as a part of the team.  Perhaps the sibling is given the job to dial for an emergency.

Another job could be that the sibling helps the parents to identify and support what the child needs. This may be for a special diet, for example, or a reminder that it’s time for medication.

Siblings feel less worry when they know what to do in an emergency situation.  Therefore, siblings may wish to find classes on basic life support, such as for babysitters.

It is recommended that siblings find other siblings of the same diagnosis. Talking with someone who is going through the same situation helps with feelings of isolation and loneliness. Sometimes there are local camps where families can participate.

One last suggestion is to help the sibling to understand medical concepts as best they can because it is likely that they are imagining the situation to be far worse than it is in reality.  When possible, it is helpful to take the sibling along to medical appointments so that they too are informed.  Hospitals have child life care specialists to help with these situations and perhaps the family can visit the hospital for a tour and/or the hospital may have age appropriate books on a particular subject.  Books can also be found at Books About Epilepsy.

Relationships with individuals with HH and epilepsy can be overwhelming, and result in both individuals having feelings of helplessness and hopelessness. And every situation is different. It is important to focus on the needs of both individuals and getting the support that works for them. Some possible sources of support for spouses and partners could be:

• Reach out to friends, family and social groups frequently.
• Find some respite through social outings or spend time doing hobbies and exercise. The key is healthy nourishing activities.
• Seek out local resources in person or online such as support groups with members experiencing the same or similar conditions.
• Maintain a sense of humor whenever possible.
• Understand the sense of overwhelm goes both ways. The individual may feel a total loss of control or identity and the spouse may feel a sense of responsibility and burden. It will take a great deal of patience and understanding.