I want to start by apologizing to anyone expecting an inspirational post. This will not be that. I just don't have it in me this morning. I will, however, update you guys on what's going on with Will and where we are in all of this.
First, a quick recap for those who didn't read my last post about Will. He saw his neurologist on June 3 and we had some very unexpected things happen. We knew his EEG was abnormal, but this seemed to concern the neurologist more than I thought it would. I guess it's because he is on such a high dose of Keppra that she expected it to normalize. He also had several abnormalities on his neurological exam that were new and concerning. So, long story short, we were referred to three more specialists: epileptology, neurosurgery, and genetics.
We have seen genetics. That appointment was on July 5. Will has had an extensive genetic work-up in the past, but given that his diagnosis is clinical at this point and all the changes, his doctor thought we should re-investigate. So, the geneticist said he would think about disorders or neurotransmitters or mitchondrial disorders. The first is only testable by a lumbar puncture (spinal tap). The second is a blood test. Jeremiah and I decided to think about it for a few days before making a decision, but ultimately we decided to pursue both. The reason for this is that some of these are treatable. Not that Will would be a "normal" kid, but treating could help stop the progression of what's going on and perhaps make that better.
We saw epileptology on Tuesday (July 19). He thinks Will probably needs a second seizure medicine but wants to do a 24 hour video EEG before adding it. This way if they are able to capture a spell they may be able to tailor which medicine they chose to his specific type of seizures. This will require an inpatient overnight hospital stay and Will to leave the EEG leads attached to his head for 24 hours. I am not looking forward to that. We had planned on having the blood drawn for the mitochondrial disorders after that appointment but we waited for over an hour in the exam room for the doctor, and by the time we finished with the appointment, the lab was closed. So, we're going to have to take him back up to the hospital to get the blood drawn.
We were finally called about his MRI yesterday. It is going to be on August 11 at 1:00 in the afternoon. He has to be put to sleep for his MRIs because he can't be still enough when he's awake. (I'm sure that surprises all of you!) What this means is that he won't be able to eat all day before the MRI. He can have clear liquids and jello (which he doesn't like) until around 10:00 but then nothing until he wakes up from the anesthesia. That morning is going to be a nightmare! We are attempting to coordinate the lumbar puncture with the MRI so that he won't have to be sedated on two separate occasions. I've been told that this should be possible, so I have my fingers crossed. We will see neurosurgery after the MRI is done, but we don't have an appointment scheduled yet. I emailed the specialty nurse this morning to let her know when the MRI was in hopes that she can get us in with the neurosurgeon the next day.
Both kids start school on August 15, and I would be thrilled if we could complete this work-up prior to school starting. I am doubtful we'll get the EEG done before then, but hopefully we can get the rest done.
Please continue to pray for us as we journey down this road of figuring out what's going on with Will. Any of you who know me well know that I am the type of person who needs answers. I'd rather have a not-so-good answer than not know anything at all. My prayer is that whatever is causing all of this is easily fixable, whether that means surgery or medicine. Regardless, I definitely need wisdom about how to go forward with future medical decisions, peace about the situation, hope that things will be okay, and strength to deal with this on top of the other stressors in my life. I appreciate you all and will keep you posted as the work-up progresses.