It’s been a total rollercoaster.
After Ethan’s MRI came back fine, Neurology hooked him up to a 24 hour EEG. His brain activity is very sluggish with what appears to be seizure spikes, but it just didn’t give Neurology the answers they really needed, to explain why he was struggling so much.
The Team decided to repeat his Lumbar Puncture to look for inflammation markers. We had a long discussion with his Neurologist who told us that he’s very concerned at this point. He let us know that he has one last theory, but if this isn’t it, then he just does not know – terrifying!
It didn’t take long for the results they were looking for to come back from the LP. His inflammation markers had significantly increased, which indicated he has inflammation on his brain.
With nothing else to go by, as all other tests had come back clear, Neurology gave a tentative diagnosis and decided to start treatment for it. We signed the consent for IVIG transfusions.
Today Ethan went for a repeat MRI. This time with contrast. The contrast shows inflammation better, and the hope was that this would help determine if their diagnostic guess was more likely to be correct.
Shortly after the MRI was done, Neurology spoke to us and let us know his MRI shows a pretty significant amount of inflammation. The pieces of this crazy puzzle were finally starting to come together. We now have a “most likely” diagnosis: Autoimmune Encephalitis.
With Autoimmune Encephalitis (shortened to AE) the immune system fights a virus but somehow gets confused and the antibodies start attacking healthy brain cells. Ethan got sick really fast, and it hit him really hard. He has regressed to a newborn level, which has been extremely hard to come to terms with.
He was started on high dose IV steroids today to help with the inflammation and we will hopefully start showing improvement soon.
We’re continuing to see slow improvements but there are many challenges that he needs to overcome yet.
Neurology says kids with AE can take weeks to months to fully recover. Their expectation is that Ethan will fall into the ladder category given how severe this is.
We were talking with the paediatrician today and she’s pretty sure he will get transferred to an inpatient rehab facility once the acute part of his treatment is done. Definitely a hard pill to swallow.
While we are feeling some comfort in finally having a diagnosis (or a most likely, as AE is tricky and some test results actually take weeks to come back, but it’s the only thing that makes sense so they’re running with it) and we can have a plan on how to get him better, the reality of it and what it means is hard.
We are glad that the “not knowing” seems to be over. We will continue to take things one day at a time. It will be a long road ahead, but we will do whatever it takes.