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  • Writer's pictureTeam Jack

The Symptoms of NKH: Seizures

Once a month from now until NKH Awareness Day (May 5th), we're going to shine a light on some of NKH's most burdensome symptoms, starting with seizures.

Last week was January 26th or 1/26, a significant day in the epilepsy world as 1 in 26 Americans will develop epilepsy in their lifetime. A fact we were not aware of until our newborn was diagnosed with seizures.

But what does this mean for Jack? What does this look?

A seizure is a sudden, uncontrolled burst of electrical activity in the brain that causes changes in behavior, movement, feelings, and level of consciousness. There are different types of seizures and Jack has experienced more than a couple types: infantile spasms, tonic clonic, myoclonic and more recently, what appear to be absence seizures.

The worst recorded episode of infantile spasms was over 30 minutes long on

September 3, 2021, in a hallway at Boston Children's Hospital, two days before we heard the letters"N-K-H".

The worst seizure type Jack experiences are tonic clonic seizures. These are the seizures that come to mind when most people think of epilepsy. For Jack, his whole body stiffens, he turns red and he holds his breath. We monitor Jack (his breathing, his coloring), reassure him he's safe and not alone and give his oral "rescue" medication if necessary.

Unfortunately, both the "rescue" med and the seizures, themselves, strip Jack of all energy afterwards.

Pre-diagnosis and in the early days with NKH, Jack was having around 8 seizure episodes a day. With this seizure pattern, Jack was left with very little energy, his body and mind were constantly exhausted. Over time, and with much trial and error, we have found a solid symptom management plan. Our goal, and the goal of Jack's neurology team, has always been to minimize seizures with the least amount of medication possible. We want Jack to be alert so he can interact and enjoy his days but not at the cost of him fighting frequent, damaging seizures. Finding this balance is incredibly challenging.

The ketogenic diet and introduction of CBD have been incredibly effective for Jack. This combination has allowed us to reduce the quantity, duration and severity of Jack's seizures while also weaning some of his other seizure medications. On top of his diet and medications, we make sure Jack is getting enough sleep, activity and fresh air, all of which play a role with his seizures. Most recently, Jack went ten whole days without a seizure-a seemingly small but significant WIN.

Jack is constantly growing and developing (which thrills us!) but with all this change comes new seizure types and patterns. It's usually right around the time that we feel like "yes, he's doing so good!" that something changes. We have to be diligent in our recording of Jack's seizures so we can catch trends and intervene ASAP. A couple weekends ago Molly sat at the kitchen table with her phone at the ready while I fed Jack just so we could capture his latest seizure type on video.

We are in frequent communication with Jack's team at Boston Children's, we lean on them for their insight and intervention recommendations. Every award and recognition that hospital receives is beyond warranted. Their plans for Jack are working-his seizures are under better control and he continues to grow and develop. On top of that, they’ve empowered us as parents, trusting our opinions and insight.

Without question, seizures, whatever the type, are scary. The guilt and fear we feel whenever Jack has a seizure will likely never go away, no matter how prepared we are. However, overtime we've learned how to stay calm and act, instead of letting this fear paralyze us.

A strong, resilient Super Jack combined with a solid plan, great medical team and the support of everyone on Team Jack keeps us going. The love we receive is unmatched and we’ll be forever grateful. 

Jack continues to thrive. He doesn't let seizures slow him down. And as his parents we will continue to do everything possible to support him in his fight against NKH, while also working, non-stop, for a cure.

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