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Friday 01 May 2026 23:53:27 GMT
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I was this kid.. but no one recognized they were seizures for a very long time. I look at her and think about how hard it would be for a little kid to have to deal with these without the help of an adult.. and that’s truly the only reason I’m sharing this right now.  you might be thinking, why are you nearly yelling her name if she can’t hear you? Trust me, I don’t like the sound either but.. we have to take video for her neurologist and PROVE that she’s unresponsive and not just daydreaming even with an established diagnosis. We have to prove the frequency of her seizures.. (this is very much the opposite of my natural habit but if it’s the only way they can truly acknowledge a seizure for what it is, we have to try to make sure they know she’s not just daydreaming — there’s also a lot of fear in my voice) Imagine this being your reality as a child, except you don’t have an adult who can help find you accommodations or care? Halston just had a very busy day of OT and PT. Her grandparents are here and things are hectic. Her brain was simply bombarded with too much stimuli. The inhibitory signals in her brain that calms electrical activity, doesn’t always work on its own. We have to keep her brain very quiet and calm. We have to have set routines. We have to stay predictable and kind — almost like we do for the dogs we share and love. But what if a child grew up like me.. having constant seizures among the chaos and not having anyone to rely on. Getting blamed for constant ‘daydreaming-like behaviors’ that makes you feel irritable and exhausted? It’s not my parents fault for not knowing what seizures can look like but.. ..Knowing the signs is so important. #SeizureAwareness #ChildhoodEpilepsy #FocalSeizures #AbsenceSeizures #InvisibleDisability
I was this kid.. but no one recognized they were seizures for a very long time. I look at her and think about how hard it would be for a little kid to have to deal with these without the help of an adult.. and that’s truly the only reason I’m sharing this right now. you might be thinking, why are you nearly yelling her name if she can’t hear you? Trust me, I don’t like the sound either but.. we have to take video for her neurologist and PROVE that she’s unresponsive and not just daydreaming even with an established diagnosis. We have to prove the frequency of her seizures.. (this is very much the opposite of my natural habit but if it’s the only way they can truly acknowledge a seizure for what it is, we have to try to make sure they know she’s not just daydreaming — there’s also a lot of fear in my voice) Imagine this being your reality as a child, except you don’t have an adult who can help find you accommodations or care? Halston just had a very busy day of OT and PT. Her grandparents are here and things are hectic. Her brain was simply bombarded with too much stimuli. The inhibitory signals in her brain that calms electrical activity, doesn’t always work on its own. We have to keep her brain very quiet and calm. We have to have set routines. We have to stay predictable and kind — almost like we do for the dogs we share and love. But what if a child grew up like me.. having constant seizures among the chaos and not having anyone to rely on. Getting blamed for constant ‘daydreaming-like behaviors’ that makes you feel irritable and exhausted? It’s not my parents fault for not knowing what seizures can look like but.. ..Knowing the signs is so important. #SeizureAwareness #ChildhoodEpilepsy #FocalSeizures #AbsenceSeizures #InvisibleDisability

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