Logan’s HH Journey
Logan was born on August 11th 2014 coming into the world at 7.3 lbs and laughing to the surprise of not only us but the doctors and nurses at delivery. We all thought this was very cute especially hearing of the death of Robin Williams that very same day, so we called him our little comedian. Little did we know that Logan and our journey would not be a laughing matter and should have expected the unexpected just like at his birth.
As Logan continued to grow, we continued to see an increase with his laughing but still chocked it up to cute baby moments. Logan was a Daddy’s boy and preferred to be in his company, much to Mommy’s chagrin but I didn’t take it personally as he always had a smile for us in the mornings and coming home from long days at work. Logan loved to watch his big sister Kadence’s antics who wanted to make him laugh. We never we able to get Logan on a good sleep schedule that he woke up consistently at night and preferred to always be with someone. Besides the issues with sleep Logan was consistently a month or two behind hitting milestones of crawling, walking or speech. I don’t know if it’s just a mother’s intuition but before Logan’s first birthday I already was having concerns with his development. Family didn’t agree with my concerns, but his primary doctor listened and provided contacts to the Baltimore Infant & Child Program for me which will always appreciate as this was the first step on our path to helping Logan overall.
Before Logan turned three there was already suspicion that he might have Autism Spectrum Disorder (ASD) and we began the long waiting game to receive an evaluation for this diagnosis. Logan was developmentally delayed with speech as he at the time had few words and predominately screamed. There was more of an improvement with fewer screams and more words, once Logan had ear tubes put in but he was still very much behind. The delay with the speech impacted him socially with his peers but he had no interest in wanting to ever play or show imagination in his own interactions at home. Logan was diagnosed with Autism in October of 2017.
In February of 2018, Logan had his first EEG due to the start of tonic clonic seizures. At first, they started at night, but eventually began to occur during both the day and night. The results were undetermined as they were showing “some kind of activity” but nothing significant and then were sent to wait for an MRI now. During this waiting game my husband was the first to look up online the possibility of what we saw regularly since birth, of the laughter and frozen smile, could be connected in some way and learned about gelastic seizures. Logan was prescribed multiple medications, which helped to improve his tonic clonic seizures, but we were still seeing them increase during the day/night. During this time as we waited, Logan had to endure many side effects from the medication, such as increase in behavioral outbursts that were impacting him at the Pre-K3 day program as well as daycare he was at during the week. These outbursts were beyond the screams and became violent with hitting and pulling at another individuals (always an adult) hair, clothes, or jewelry.
Logan was officially diagnosed with a Hypothalamic Hamartoma in May of 2018 (at the age of 3) following his first MRI at Johns Hopkins showing a tumor approximately 1 cm. Laser ablation was offered by Logan’s neurosurgeon to treat the seizures. Logan’s first laser ablation surgery took place in August of 2018. Logan remained seizure free for approximately four months, but the Gelastic seizures began to come back more frequently, though changing in physical appearance. Before his surgery, the gelastic seizures occurred with a laugh and a smile/smirk of the right lip curling up. After surgery, the laugh no longer occurs, however, Logan’s face would still freeze with his right lip smirking. Logan endured his second laser ablation surgery in July of 2019 and his Gelastic seizures have only occurred 1-2 times per month since then. With medication management, Logan’s tonic clonic seizures never returned after the first surgery that we were seeing. Logan did not endure any injury or complications after the first surgery. However, after the second surgery, Logan’s left eye remained dilated and sensitive to light for a month or so.
Logan just turned 8 years old in August and has entered the 2nd grade. He has been supported with an Individualized Education Plan since preschool as a student with Autism vs Medical Diagnosis. This decisions was made in the hopes that as Logan ages in the school system he will be more inclined to receive aides and assistance with the autism diagnosis. We have continuously been working with Logan’s school and outside aides to manage his behavior while ensuring he is getting the best services and education that he can. Though Logan engages in daily meltdowns, often multiple times per day, the visible triggers include having to transition to an activity or situation that is new to him. For example, earlier this year we were trying to have a ski trip outing, but Logan was not able to cope with leaving the house, resulting in hitting and screams that we all stayed home. If Logan is familiar with a routine and location there is no behavioral outbursts or physical aggression. However, any new situation results in a meltdown. When these situations occur, we work to provide Logan a space to calm himself down; provides him with ‘if/then’ statements; and with rewards when there is a successful transition.
In this last year we have recently begun to experience meltdowns that are not prompted by any usual trigger and are beginning to suspect to be dacrystic seizures. During these episodes Logan will respond asking ‘what happened?’ and when they explain to him what happened he will say ‘What?’ and begin to cry and apologizing, showing complete remorse on a situation that he doesn’t remember. There have been times when they’ve noticed a distant look in Logan’s eyes when he’s crying that only brings up more question marks and less known answers. We had a recent EEG stay done where they again weren’t able to pick up fully activity happening when the outbursts occurred or the frozen smile, as we know this can be due to the seizures being so deep in the brain and unable to be picked up. But, they were finding that Logan was having “benign epileptiform discharges of childhood” and they are looking back on his past EEGs to see if these events also occurred then or if this is a recent development that could potentially increase in further seizure activity.
Our family has been relying on the Hope for Hypothalamic Hamartomas organization to find answers regarding his rare seizure types and how to treat them. We have been currently looking for support with how to help Logan successfully go through his day, while transitioning to new activities or situations. The new Hope for HH website has been a great resource to refer Logan’s teachers and school administration to so they can get a better understanding of Logan’s diagnosis HH. Its providing that picture for everyone rather than just words that go over their heads.
This is just the start of our journey and first chapter in Logan’s life. Every child is different, and we know we’ll be dealing with more twists, turns and flips but the important thing for us to remember is we’ll be at each other’s side through it all. Our story is still in the process of being written, with this introduction/diagnosis to in Logan’s life, but we know he will be making a positive impact on the world. We do not want or plan on him being a statistic as we will continue to fight the good fight to get answers and help Logan so he can thrive and enjoy life to fullest. I, like many other caregivers, are using our voices now to speak for our children to raise awareness and advocate. But I’m hoping and believe Logan will be able to use his own voice to make a difference in his life and others.
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