So in 3 days at the hospital Rae had a video EEG, lab draws, a brain and spine MRI, 14 hours without food, and countless times being woken and vitals taken. We are home now with mostly good news.
Rae’s MRI and her EEG were both clear and showed no brain abnormalities or changes since her last MRI (last February). God is so, so good!
Of course, the minute we got to the hospital she stopped having those episodes of screaming about things being on her. Like, not a single time did she mention bugs being on her, after doing it DOZENS of times (and scaring the crap out of me) in the 6 days prior. But that’s how these things go I guess. Since they did all the major neurological testing to make sure there wasn’t anything REALLY serious going on, we can do the rest of the testing outpatient.
So the neuro and primary doctor’s thoughts now are it’s probably a neuropathy type sensation (though her discharge papers claim they were hallucinations, which is bologna, I think). So as they explained to me, she’s having a pins and needles type pain running down her legs sporadically, which she describes as bugs crawling all over her. They discharged us with instructions to follow up with her mitochondrial disease doctor ASAP and make sure she’s up to date on the staring episodes and now the neuropathy, which are both new symptoms and probably related to her having mito. We also need to follow up with her immunologist to check for junior rheumatoid arthritis (which Big S has). Also to follow up with physical medicine for another conversation about orthotics to support her leg muscles. We also discussed changing her feeding schedule to try to decrease the episodes of muscle weakness and pain she’s been having (Pretty much for as long as she’s been able to communicate, she’ll tell us her legs hurt random times through out the day several times a week with no known cause.). So the decision was made to start doing bolus feeds every 2 hours and continuing with her overnight feeds as well to see if that helps.
(A bolus feed is taking a large 60 ml syringe and holding it up without the top on it and letting the formula flow through her gtube rather than her being hooked up to her feeding tube pump for all hours of the day. I’m a little nervous about having to carry all the extra feeding tube supplies around with me and having to feed her when we’re out doing stuff/play dates, but I’m sure it will feel normal in no time).
Tomorrow we follow up with our primary pediatrician, who hopefully can speak to someone about moving up her appointment with her neurogeneticist (mito doctor) since right now the earliest appointment we have on the schedule for her is july, which is a long time to wait to start her on the mito cocktail (basically large doses of vitamins and supplements that sometimes will help mito patients. There is no cure, currently.) and explain the changes that have been going on lately.
I am so incredibly grateful for a clear MRI and EEG. We were very blessed to have great doctors and nurses and care while we were there. Rae did great, all things considered. And we are especially glad we got to go home today without anymore inpatient testing.
“And we know that in all things God works for the good of those who love Him, who have been called according to His purpose.” Romans 8:28