If You Suspect HH
What are the common symptoms?
Gelastic and Dacrystic seizures
Cognitive and Developmental delays
Balance and movement issues
Who do I consult for correct diagnosis?
Consulting and establishing a relationship with a knowledgeable team
Obtaining a correct diagnosis, while crucial to the treatment process, can be very challenging for some patients. Given the rarity of the condition, many professionals will not have the experience to diagnose a patient correctly. Relevant testing and correct interpretation of those tests is paramount.
Providers Finding a provider with experience can lead to an earlier diagnosis and the optimal treatment plan.
Treatment options for hypothalamic hamartomas (HH) have increased dramatically in the last 10 years. When deciding on a treatment, it is important to discuss all options, the associated risks, and compare that to the potential long-term benefits. Make sure all your questions get answered completely, and that you trust the team of doctors who will be with you throughout the course of treatment. If you have to travel to another medical center for surgery or treatment, it is important that you establish a good relationship with the doctors in your local area that will be responsible for any follow-up care or treatments.
Treatment options for hypothalamic hamartomas and the associated seizures currently include:
Gamma knife radiosurgery (GKS)
MRI-guided Laser Thermal Ablation
Other alternative treatment options
Truths and Myths
HH is a spectrum disorder.... Some adults and children may be highly functioning with few or no seizures while others may be severely impacted by seizures, cognitive decline, and behavior issues.
The earlier the seizures occur, the more affected the individual is likely to be.
“I don’t see any seizures on the EEG – so you must not be having any.”
“There are no effective treatments for HH”
While the exact number of Hypothalamic Hamartomas cases worldwide is not known, HH is estimated to occur at the rate of 1 in 200,000 children and teenagers worldwide. This number may be understated due to the fact that the process of diagnosing HH is complex and often not well understood.
Here are lists of of suggested questions you can print out and take with you to your neurologist, neurosurgeon and/or neuroradiologist.