Meet Kaelee

Kaelee’s HH Journey

Kaelee was born in 2013 as the first of identical twins. The birth was uncomplicated, and she and her sister reached all of their milestones appropriately and she was a happy, bubbly little girl. When she entered school, Kaelee was by all standards above average. She and her sister had a large friend group and they both made the traveling softball team. Her story really begins in the winter of 2020.

While being homeschooled during COVID, Kaelee began to have what we called “episodes”. She would be unaware of her surroundings and unresponsive to verbal conversations; these periods would last roughly 15-20 seconds. Sometimes, she would vomit and would develop a very bad headache, after which she would fall asleep for 30 minutes and fully recover, with no memory of the event. With a family history of migraines, we thought the problem would dissipate when she returned to school. As you can imagine, it did not. The “episodes” became more frequent. In early 2021, we were referred to a pediatric neurologist, where we began to treat migraines.

As the year progressed, the episodes began to show physical signs. She would “chew” with her mouth, spin to the right in a circle, and collapse to the ground if not supported; clear signs of focal seizures. Her neurologist prescribed the first of many anti-seizure medications and it did not work. We tried several others with no success and an MRI was ordered in October of 2021, the results of which we were told were normal.

Over the next two years, we tried almost a dozen medications, and we watched the happy little girl we knew vanish. She became sullen, angry, threw temper tantrums, stopped playing with her sisters, and wanted to be alone. Additionally, she started to struggle in school and my above-average child fell to low-below in all academic categories. Meanwhile, her seizures increased in severity and frequency and she was averaging 16 “full” seizures that required sleep recovery a month. She also started having “small” seizures, where she would just blank out of moment and then return to baseline. Those averaged 12 a month. We made the difficult decision to pull her off of the travel softball team as the seizures were frequent and unpredictable.

In 2023, we were referred to a pediatric epileptologist at Children’s Hospital Colorado. Kaelee underwent a neuropsychological evaluation in July, and her specialist ordered an EMU (epilepsy monitoring unit) stay in August of that year. It was discovered that in addition to the visible seizures we were seeing, she was almost constantly in a seizure state, even while sleeping. While genetic conditions were ruled out, it was recommended that we schedule a stereo-EEG to determine the location of the seizures and begin the surgical evaluation process. We were informed that while the condition – whatever it was – was not degenerative, the seizures were, and if we did not stop them we would continue to see a cognitive decline over time. The neuropsych evaluation determined she had cognitive deficits, and even with surgery “recovery to the pre-seizure state would be extraordinarily rare.” Kaelee underwent an MRI before we left.

On August 30^th, 2023 Kaelee’s specialist called me and informed me that Kaelee had a hypothalamic hamartoma that had been present – and subsequently missed – in her 2021 MRI. While frustrated that our child unnecessarily went through two additional years of seizures, we were elated that the source of the seizures had been identified.

Kaelee underwent a laser ablation in October of 2023. She developed Horner’s Syndrome on the left side of her face, but the happy girl we knew started to return. She was no longer angry and reclusive, and she started to play with her sisters again. Her twin, Jaelyn, noted, “She’s fun again!”

Unfortunately, our hope was short-lived. After 14 days, Kaelee began to have seizures again. At her follow-up appointment, her neurosurgeon hypothesized that perhaps the whole brain had become involved in the seizure activity, and we may have to start at Square One – including the stereo-EEG. Another MRI was ordered to ensure that there was no part of the hamartoma left.

Luck was with us this time, and there was indeed a small portion left that could be responsible for the continued seizures. A 2^nd laser ablation was scheduled for February 2024. The month of January was particularly bad for Kaelee, and she experienced more seizures than she ever had before – 26 long ones and 12 short ones.

We are happy to say that Kaelee has been almost 60 days seizure-free. She has some hypothalamic obesity concerns, but she is happier than she has been in years. While it was at first very difficult to come to terms with the fact that who she was is gone and isn’t coming back, we are determined to support our girl in what she needs. She has had to relearn many physical things she used to do routinely – such as brushing her teeth and washing her hair, and she is on an IEP at school and receives occupational therapy once a week. But we have also seen her reading scores improve exponentially compared to where she was before, and she has rejoined her sister on the travel softball team!

The journey hasn’t been easy, and we still don’t know how it is going to play out. The seizure could start again – or not. All we can do is take it one day at a time, hope for the best, and let Kaelee know that no matter what the outcome, she is loved.