Spends his life looking for patterns, things that repeat

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One door closed, another opened: Stoke vs. MT-APP6

So many tender mercies with what we've found with this new mutation.  I feel like it has the ability to open new... Maybe better doors? For him. So as devastating as it seemed to get that news Tuesday...I won't if looking back 10 years from now it will make more sense.  What I've learned so far about mt-atp6: 1) we've probably made the best medicine decisions for him (depakote is contraindicated for mt-atp6 but was our next choice as it's now considered the #1 Dravet drug  2) general anesthesia is really hard on his body. Specifically the gasses and propofol, what they would have been using for the trial 3) keto diet is one of the best diets to have him on (soooooo validating)  4) the investment in Dr. Frye has been  worth it. It's validated everything we've done with him.  5) sicknesses are so so hard on the body with mt-atp6. This explains so much- the extra seizures, how he is sick twice as long as everyone else and usually needs antibiotics. We *might* ...
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gastric stasis

  Great question. I think Google explains it better than I can: Migraines cause nausea and slow digestion (gastroparesis) because the attack overstimulates the brainstem and autonomic nervous system, which regulates stomach function. This neurological disruption triggers "gastric stasis," where the stomach stops moving food along, causing nausea, vomiting, and delayed medication absorption. I have found that if I have a bad migraine it doesn't do me any good to take ibuprofen unless my stomach is totally empty. Otherwise it just sits in my stomach for hours and does me no good at all.
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“Don’t let your child’s diagnosis become your personality” Poem

Feb 8, 2025 From Dravet FB Group  “Don’t let your child’s diagnosis become your personality” It is something that is said often, given as advice. That advice is unrealistic. Hearing your child’s diagnosis is life altering, it changes everything you thought you knew before you heard those words. It changes how you view the world and what you once thought was important. It changes how you carry yourself through unimaginable obstacles. And it causes you to live in fight mode because flight mode isn’t an option. That diagnosis, It made you feel such an indescribable pain that you don’t allow anything less than to break you. That diagnosis, It is a part of you. You couldn’t stop it from changing your personality if you tried. And you shouldn’t. That diagnosis made you unstoppable, It made you love harder than you knew possible, And it made you strong. The type of strong you envied in others, the type of strong you never could have imagined yourself capable of. That diagnosis, It made yo...
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