Family

Blame me, shame me

Originally posted 2014-11-17 20:07:23. We recently had the 72 hour EEG done on Dusty to investigate further just how many seizures he is having, or at least to get a better understanding of some of his random movements. We have wondered for a while now if some of those random movements Dusty makes were muscle spasms or actual seizure activity. We got an answer to some of that this past week. The results of the…

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Family

Seizing Halloween

Originally posted 2014-11-02 00:49:03. On the last day of the EEG testing and it had gone so well…but wait, there is more. So the technician was scheduled to be here around 9am so I wake Dusty up at 8:30am so that he could take his medications and be ready when he got here. He gets up, uses the bathroom, and then goes into the kitchen to get his cup of water to start to take…

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Family

Life is precious

Originally posted 2019-06-01 06:17:25. My son… silly that he looks like he works out but he only works fork to mouth. You can see the vagal nerve stimulator in his chest to aid with his intractable seizure disorder – I never thought I’d see him reach 25 years old. He’s had meningitis and with his immune system the way it is they weren’t sure if he’d be able to fight it. My momma was there…

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Family

Circuits Overload

Originally posted 2019-05-22 11:23:54. This was a post from 2016 that never got published lol Have you ever felt as if your circuit board is on overload? Like the wires, connections in your body’s circuit board is on overload and at risk of burning out? Well that is where I am this week. James’s been at home because the employer he was working for did not get awarded the next contract for the job. So,…

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Family

Say what?!

Originally posted 2019-03-15 05:00:10. Would you believe I just got this bill out of no where? This stems from my son’s oral maxillofacial surgery in 2013. All costs were supposed to be covered by insurance and grants from the state. First and last time I received anything regarding a bill was a year after the surgery. Then, today. I am not really sure what to do but we sure as hell can’t afford this. ‍♀️‍♀️‍♀️‍♀️

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Family

Ultrasound treatment for Epilepsy

Originally posted 2019-01-31 09:10:18. In a first-in-world clinical trial, researchers at The Ohio State University College of Medicine are studying how well focused ultrasound surgery works in adults with a specific type of epilepsy whose seizures are not controlled by medication. Up to 10 adults with the “medically refractory lobe focal onset” type of epilepsy will be enrolled in this study. The technique uses magnetic resonance-guided focused ultrasound through an intact skull to reach tissue deep in the brain…

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