Kaitlyn’s HH Journey We brought our perfect beautiful daughter home two days after she was born. Soon we realized that we had a fussy baby who wouldn’t sleep unless we held her and was sometimes inconsolable. When I took Kaitlyn to the pediatrician for her two-week check-up, I was told that she had colic. Soon…
News, Research & Resources recently launched new content on the Hopeforhh.org! If you haven’t visited the Hope for HH website recently, we encourage you to check out the newly updated and reorganized section on News, Research and Resources. You will find the following information: News includes articles reported in the press & archived Hope…
A Sister’s Story by Annie Kane My name is Annie Kane, I’m 14 and I have two crazy siblings: my brother Charlie and my sister Gigi. Now, why would you refer to your siblings as crazy, Annie? Well, let me start by saying that from my own experience crazy does not mean ‘ludicrous’ or ‘insane’.…
Mason’s Story It was a Tuesday, September 22nd 2015. Mason was about 19 months old and we had run into the grocery store to pick up a few items. He was babbling away, sitting right in front of me. Next thing I knew he was no longer babbling, no longer clapping, no longer moving; instead…
Endocrine Dysfunction For most patients and families – the thought of HH surgery brings up lots of questions and concerns. Sometimes we aren’t sure what to ask our surgeon regarding all possible complications. With so much focus on seizure control, the discussion of possible effects on endocrine function may be limited, but should definitely…
It’s less than 2 weeks away. It includes guests from as far as London, California, and Canada. New nationally recognized medical experts will be speaking on cognition, memory, behavior and more. A Hope for HH research grantee will be sharing her preliminary findings on a key project. All of this and so much more at…
Many families with HH and other refractory (difficult to treat) seizures search for options other than medications at some point in their treatment plan. For HH patients and many others – the anti-epileptic drugs (AEDs) are not only NOT helpful, but the side effects can be unacceptable. Those may include: memory loss, fatigue, behavior issues,…
For many young adults with HH, the transition from school to work or higher education can be complicated by epilepsy. Even for those who are seizure-free, there may still be memory challenges, anxiety issues, attention and focus limitations, as well as a lack of processing speed and awareness of social cues. One of the most…
For NEAM 2017, get informed on the current state of epilepsy. Mark your calendar now for 12/1 for a webinar by leading epilepsy experts coming LIVE from the American Epilepsy Society meeting. December marks the 71st meeting of the American Epilepsy Society (AES) an annual meeting of clinicians, doctors, nurses, and researchers who focus on…
Hope for Hypothalamic Hamartomas (Hope For HH) is happy to announce the new HH Program Coordinator for PCH – Diana La Rocque RN, BSN, CPN Ms. Diana LaRocque is the neurology nurse program coordinator for Barrow Neurological Institute at Phoenix Children’s Hospital. She specializes in coordinating patient care across the healthcare continuum for patients with…