About two weeks ago, Amanda caught a cold. No one in the house was sick so we don't know where it came from. Illness is often a cause of a lower seizure threshold in people with epilespy. On Wednesday night, I saw her do something that I hadn't seen in six years (since before her functional hemi brain surgery) but I wasn't totally sure I saw it so I waited. Thursday we saw a couple more but they were subtle and we still weren't sure. Unfortunately, by Saturday morning, they were not so subtle so we contacted her neurologist who lined up an EEG for her on Monday in Raleigh.
The EEG confirmed that she was having myoclonic seizures ... they are not Infantile Spasms (like she had before surgery) but they appear to be related. So she is pumped up on medicines now while we await a call from UCLA in hopes of getting her out there quickly for a thorough evaluation. Her neurologist in NC said it was important to hit them aggressively to get them stopped. However, even on very high medicines, they continue to break through, so we will likely be adding more meds to try to gain control of them. We should have news sometime in the next few days as to when we will head west to UCLA.
It is possible that the left side (which was functionally removed/disconnected) has rewired a bit and that she may need another brain surgery. Or it is possible that we will find a medicine combination that will work to stop them. We will know more as time progresses and we are able to have her evaluated at UCLA on their high tech equipment. Sorry to not have better news to post.
We know Amanda is a fighter and we will all face this head-on with confidence that God has an amazing plan for our little angel. This child has been a tremendous gift to our entire family and has impacted so many lives already. We look forward to seeing how God will continue to use her to touch people moving forward. Your continued prayers and support are highly appreciated.
Susan
