On Tuesday, I saw the neurologist at Randall Children’s. She’s the doctor who went through a year long mitochondrial medicine fellowship up in Seattle. It was a good appointment, and she’s really nice. 🙂 I’m so blessed to now have a doctor who will take care of all my mito issues locally.
I mentioned that I’ve been dealing with worsening myoclonus (muscle jerking)—it can be brainstem related, spinal-cord related, or from the muscles. It could also be from seizures. So she went ahead and ordered a standard 30 minute EEG which is scheduled for June 11th. If it’s normal (it often is because it’s such a short study), she’ll look in to admitting me for a longer EEG at the hospital.
She’s also going to write up an ER protocol letter for whenever I have a “mito crash.” She’ll explain what type of IV fluids I should receive, what meds to stay away from, etc. I’m sure the letter will be really helpful for the ER doctors!
Today I saw my GI specialist. He’s going to decrease the TPN fluid volume/calories again because the amount I’m currently receiving is still too rough on my neurogenic bladder, and I’m now at a good weight. 🙂 If I start losing weight again, then he said we’ll have to go back up on the TPN. We also discussed how I may not be able to get off of it if the stomach/intestinal issues don’t improve.. 🙁
In one and a half weeks, I have my 3rd sleep study and 1st multiple sleep latency test. The exhaustion has just been getting worse. 🙁
In other news, we leave for San Diego in 23 days!!