This is one of the harder parts of our journey to share.
This is one of the harder parts of our journey to share. 💜 I love sharing Mya’s happy moments, but I also want this page to show the truth behind navigating intellectual disability, autism and epilepsy. Because if another family is experiencing something similar, I want you to know you’re not alone. Right now, we’re looking for answers. One of the hardest parts is that Mya can’t tell us what she’s feeling. Is she not eating because she’s nauseous or just not hungry? Is she exhausted? Dizzy? Is her balance off? Does something hurt? As her mom, knowing something isn’t right but not being able to ask her what she feels is incredibly hard. She can have a completely normal day and then suddenly change. She becomes extremely tired, can’t focus, and her eyes seem to roll upward. Sometimes she responds when we say her name, and other times she doesn’t. The best way I can describe it is that she looks heavily medicated or “high.” One reason we did her three-day EEG was to determine if these episodes were seizures. She had some of these episodes while hooked up to the EEG, and they were confirmed NOT to be seizures. Her seizure activity only happened at night while she was sleeping. Initially, we thought her seizure medication was causing this. But she is no longer taking a morning dose, and we’re still seeing these episodes multiple times a week. Both videos were taken after Mya had been completely herself, and then suddenly, this is what we saw. We are communicating with her neurologist, documenting everything and trying to figure out what her body is telling us when she can’t tell us herself. I don’t love sharing the hard days, but they’re part of Mya’s story too. If you’ve experienced anything similar, I’d love to hear your experience. We’re not looking for an internet diagnosis—we’re working with her medical team. We’re just looking for answers and hoping maybe
By Nick Coffey
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From the Milestone Moments 🎉 community. Celebrate every unique developmental milestone, no matter the timeline. Join special needs parents in sharing stories and support.
Posted in Mya's Milestone Magic ✨. Celebrate unique timelines and milestones, embracing every step of the journey with joy and support.
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