Ella has a seizure disorder. Many will call it "epilepsy" but all that means is "seizure disorder" so we can really call it either way. I'll try to explain a little bit about what we found out from the neurologist today. I have to admit, I don't really understand all of what he said and as Joe and I drove away we started talking and realized that we have a ton more questions, but for now, these are the answers we received.
- Ella's seizures are a cause of the brain damage done at birth and could have surfaced more recently because of new brain growth (the good kind) and an interaction with the present scar tissue and open pathways.
- They have always occurred when Ella is sleeping and I learned (Joe already knew) that your brain is more active when it's asleep than when it's awake, so the constant movement on her raw pathways in her brain could trigger a seizure.
- Why doesn't the medicine stop the seizures? It might just be lowering the number that she has. They can't prove that Ella would have more, or less, seizures off the meds, but we aren't willing to risk it either. The thought is that off the medication the seizures could be more frequent and more intense, so for now we just monitor the levels of medication and how her body processes that medication.
- Exhaustion may play a role in Ella's seizure activity. We can't prove how long the exhaustion has to occur to lower her threshold for seizures, but we are going to try and be more proactive to prevent exhaustion, but not to completely decrease her involvement level in life...that's a rough balance for us because there are no clear cut lines on what level wears her out and causes her brain to react. This will have to be a prayer request that Joe and I will agree and feel a peace about the activities we elect for Ella to be involved in...both for her benefit and for her therapy.
That's all I can remember, but I'll have to see if I missed anything from Joe.
2 comments:
Interesting! So glad you guys finally have some answers, but frustrating that it seems to open up a whole new can of worms. Praying for you guys and for my sweet Ella girl!
That makes me want to jump up and down....not the seizure part, but the brain growth part! I love it, now praying God's purposes for these seizures would be made known to you guys and praying down 2 Peter 1:3
"His divine power has given us everything we need for life and godliness through our knowledge of him who called us by his own glory and goodness." Now, Knowing how to live "this life" He's lovingly placed you in...it's a promise we have all we need to live it, and in His goodness He can't wait to show you! I'll continue in prayer! Love you guys!
~mt
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