It was a cold, snowy day, in Jan 2010. Brock was 3 years old when he fell backward, hit his head on the dresser, and began seizing. In the ER, the physicians believed he passed out due to his sugar levels dropping leading to a seizure caused by head trauma. He was referred to the neurology department of our children’s hospital for precaution. During that meeting, the neurologist suggested that Brock have an EEG but he felt that everything was fine. Four weeks following the EEG, they called to give us the results. Brock had generalized epilepsy and needed to start medications. Shocked, scared, and unaware of what the next steps were, we agreed and scheduled a follow-up with neurology. We had so many questions and felt so unsure about what all of this meant. We didn’t know what epilepsy was, let alone the best way to handle it. Brock began having an increase in seizures daily and the conversations with neurology became extremely frequent as we were in uncharted territory.
By May 2010, Brock had been evaluated by three different neurologists, he was flown from our critical care access hospital twice in four days, admitted to the hospital three times a week, and had numerous ER visits. After the last admission and multiple EEGs in June 2010, Brock was diagnosed with intractable epilepsy, specifically Myoclonic Astatic Epilepsy known as Doose syndrome. At that time, with too many failed meds to even count and seizures worsening, the doctors suggested the Ketogenic Diet. In July 2010 he started the diet. On that particular day in the hospital, Brock had over 250 seizures that we could see and count. As he continued to fluctuate, the diet was helping, but seizures were still out of control in general. He had at least a 50% reduction in seizures due to diet management, but still too many daily seizures were occurring. It was recommended at that point (2012), Brock have a Vagus Nerve Stimulator placed. This procedure would be in November 2012, but immediately prior to that, Brock became chronically dehydrated sending him to the hospital daily for fluids. Due to this severity, he had a PEG tube placed in August 2012 for hydration but became ‘failure to thrive’ the following week requiring the tube for all intake and nutrition.
After seeing multiple neurologists and unsure of what was taking place, we were told neurology couldn’t do much more for him so they would stop seeing him every 3 months and start to follow up yearly. We became acquainted with some dear friends who helped and encouraged us to seek a second opinion.
In June 2017 Brock was diagnosed with Lennox-Gastaut Syndrome. Neurology visits continued every three months for adjustments to the Ketogenic diet and medications. Despite the intense treatment plan Brock continued to have daily seizures, primarily in his sleep.
Recently, we have been discussing the treatment option of an RNS (Responsive Neurostimulation device). Brock continues to suffer from daily seizures which are impacting his growth and brain stability.
Brock is able to walk but he presents with delayed language and speech. The amazing thing about him is that he is the most content and laid-back kiddo. He goes along with what he has to have done, doesn’t fight us, and always knows that “God’s got this.”