Leela

Hey! For those of you who have been keeping my niece, Leela, in your thoughts and prayers here's an update from my sister-in-law, Kendra, on how Leela is doing and what the doctors have found out:
"Okay, so it's been hard to find time to post any updates but I will try to give y'all the scoop in a nutshell (but it will be hard). On Friday Leela went in for an MRI to look for possible reasons for the way her eyes drift apart, and developmental issues. She has also been having spells that we have been suspecting were some kind of seizure, though the doctors at the time felt it was probably acid reflux. She was given Nitrous Oxide to sedate her for the test, which should only take 15-20 min. to wake up from. She didn't really even start to snap out of it for over 24 hours. After staying at the hospital overnight in Eau Claire, the nest afternoon when she was still totally limp the doctors decided to ship her to Mayo Rochester via ambulance. The neurologists there (here) reviewed the MRI and found some abnormalities in the brain stem consistant with a genetic condition called Metabolic Syndrome. It is where the body is missing some building block that is required to break down some nutrient(s) in the body, so the nutrient(s) build up in the body. They also decided that her spells (which have increased since this started) are almost certainly infantile spasms, which are a type of seizure. The other possibility is that she has some kind of mitochondrial issue, which I'm more confused about. They said she has Lactic Acidosis, and has for some time, but has been compensating well for it, and a slight heart abnormality that isn't causing her any probems right now. She also had elevated levels of some other acid that I think starts with a P. She's undergone quite a few tests and seen about 1000 different people. So far, besides the MRI she's on her 2nd eeg, and she's had an ekg, an echogram, a few blood tests, urine test, a skin biopsy, a swallow test and later today they are supposed to do a spinal tap. They had to put something called a stick line (pretty scary) in her, which they had to sedate her for again, but they used a different gas this time and she came out of it just fine. Some of the tests they are doing to find out if the condition was passed down genetically or if it's a new mutation. They probably won't know that for about two months. They said that the problem they think she has would explain the eyes, the seizures, the developemental issues, the heart abnormality and the trouble coming out of sedation. BTW, she's finally been acting more herself since last night. She's still not 100% though. Also, this whole time I've been very ill. I was almost positive it was influenza but they tested me for it and it came back negative. So now I'm thinking it's just some random respiratory infection that has developed into pneumonia. Anyway, I have to wear a mask a lot and everyone coming in is supposed to wear a mask, gloves, and gown. They really hope Leela doesn't catch it because apparently kids with this condition have a hard time dealing with illness. So, I think that's about it for now. We're still here, waiting. After all that, we have a lot of info, yet we really don't know much at all yet. We have no idea when they will send us home. We would like to thank everyone who has helped us and sent us they're thoughts and prayers. Sorry we don't post more often or respond to everyone individually. We never know when another team of doctors is going to walk in. God Bless everyone!"