We finally have a date- July 7. Not quite as early as we had hoped, but we are grateful nonetheless. The more we hear about Cleveland the more we like it. They intend to do all tests that Mayo was going to do (MRI, Video EEG, etc) plus more: Neuro-psych testing to see how the epilepsy and meds have affected her development, and a PET scan to check for metabolic disorders that could cause seizures. The testing will take at least three days, possibly more.
This date also gives us time for a much needed vacation, a trip to Michigan to see our family. We plan to go next Thursday night for a week.
So what do we hope to get out of Cleveland? We are hoping for a clearer understanding of what is going on with Aggie, though we know that 70% of the time, there is no known cause for epilepsy.
We are also hoping to find out if she would be a candidate for surgery. Though there may be drugs out there that would work in her case, so far it is not looking good. And the more meds that do not work for her, the less likely it is that any of them will work. So, as scary as brain surgery sounds, it is also scary to think it may NOT be an option! (especially considering she had nineteen seizures yesterday!)
Brain surgery is only an option for people who have a "seizure focus," that is, a part of the brain that seems to be causing the seizures. If there is a focus, and if it is reachable without causing too many other problems, surgery may be a good choice. 70% of patiets are seizure free after surgery (and these are patients that could not gain seizure control with medicine.)
We are eager to explore this option early on, as young kids seem to recover much better from brain surgery- the sooner the better. Of course we also want to hear more about the ketogenic diet and the VNS and any other treatment options out there.
So Cleveland will be a time of big decisions- if surgery is an option we may decide to do it right away, or we may try other things first.
How does one prepare for our time at the epilepsy center? For possible brain surgery? For huge decisions and hope and risk? Will Aggie be coming back home with us? The same Aggie we took? A helped Aggie? A brain damaged Aggie? Will we come back with good news and hope, or devastating news and last resorts?
We have no clue, so we will just keep doing what is in front of us.... Probably while hugging the all kids a little tighter along the way.
1 comment:
Em, you and your family are in thoughts and prayers. I am so glad that you are able to go to Cleveland! When are you planning on being in MI? I have a feeling we are going to miss each other. We leave for FL on the 9th and won't be back until late on June 18th. Doug had talked about stopping in Seymour on the way home too and of course that would have included stopping to see you all too.
I am off to get the crew ready for church, which as you know, is no easy feat. All our clothes are packed for FL too. Now I have to be creative! Take Care and maybe we can cross paths sooner than later. Blessings to you all!! Give the kids hugs from us!
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