Robert saw his epileptologist on Wednesday. We love this doctor and trust him to recommend what’s best for Robert.
Robert had his Deep Brain Stimulator implanted the summer of 2021 and I t’s been at the same stimulation for about a year. Robert has been able to slightly reduce one of his five anti-seizure meds and his seizures have been ever so slightly reduced but the change hasn’t been dramatic. At the appointment, we discussed changing the settings of the DBS and I agreed to it.
Robert is currently set to get the stimulation on the bottom module at the highest setting. The doctor said he has seen better results if the top module in the thalamus is stimulated so he made that change.
Robert had already had two seizures the day of the appointment which I attributed to waking him up early for PT. After the neuro appointment he had several more seizures that afternoon.
By the evening, Robert was pretty wiped out and unable to walk well or stand up straight (he was leaning which happens sometimes after seizures).
On Thursday, he was losing all sorts of muscle control. He was in constant motion: arms, upper body moving back and forth, difficulty eating because he couldn’t hold his fork still to take a bite.
I assumed it was a reaction to the DBS change and wanted to see it through - maybe he just needed to adjust to the new setting.
I don’t think he slept at all Thursday night and he was in constant motion on Friday. Constant motion! That is no exaggeration. (I can only imagine the calories he’s burning!)
This video is from Friday. We had to use the lift starting on Thursday since he was unable to stand or walk without a huge risk of falling.
He was still in constant motion at bedtime and moved his pillows up and down, took off his oxygen cannula. Second night without any sleep and I was starting to worry what effects that might have on him so we shut off the DBS at 2 am.
Robert finally went to sleep after about half an hour of shutting off the DBS. He slept late today but was still in constant motion. As the day wore on he seemed less frenetic but it was still exhausting just to watch him. He still needed help with his meals since he couldn’t control his silverware very well.
Oh and he aspirated while taking his medicine because of all the movement!
I’ll message the doctor and make a call to his nurse first thing on Monday. I’m assuming all this is from the change to the DBS but am hoping this isn’t permanent or from some other issue! Plus I’d really like to be able to turn the DBS back on since it was helping some.
Throughout it all, Robert says he is doing super, amazing, excellent and great.
Of course he is.
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