Monday, January 16, 2012

Seizures, and a new Doctor

So, I quit writing on the blog because it was exhausting. So much emotion to write out what I was already living every day. I'm not sure I can write it out anymore, but since we've enlarged the Seizure chapter of our lives, I think it's easiest to write it all here, rather than try to piece it together on Facebook or over phone calls. As you may know, Ella has had seizures since just before her 3rd birthday. We have been managing them with medications, but they have started to get out of control. In 2009 she had 3 seizures, that we attributed to infections and just thought that whenever she would get sick she would have them. In 2010 we realized that they could happen without a fever or infection…and her meds increased. In 2011 we started off with an additional med…and another spike in seizure activity. She was averaging once a month…until December. Between 12/12/11-1/11/12 (4 weeks) she had 6 seizures. We have had the same neurologist since NICU and have decide to go outside the Medical City offices to find an actual Epileptologist (specializes in epilepsy, instead of just neurology). We found an amazing doctor at Cook Children's Hospital…yeah, we have to pass Medical City and Children's Medical to GET to Cook's, but it was the first place we could get in and the doctor was so wonderful. Here are some of the points from the appointment today (these are going to be scattered and may not be in sequence…but here they are):
  • her seizures will most likely be lifelong
  • he would like to switch us off of the 3 current medications (Trileptal, Keppra, and Vimpat) she takes and put her on only one (Clobazam/Ofni)
  • Ella may be a candidate for surgery (a brain surgery to remove the parts of her brain where the seizure originate)
  • the actual part of her brain where the seizures start is between the damaged/dead brain tissue and the healthy tissue…don't ask me what it's called because I can't repeat it…started with a "g"…I'll research it
  • He said her seizures are more than likely a result of the original brain damage caused by her meningitis at birth…it's amazing how much the illness at 12 hours old has effected every aspect of our lives.
  • We were pleased that he seemed surprised that the seizures took so long to surface after the NICU…we were given a gift that he dubbed a "honeymoon period" that we didn't even know was a gift of a seizure-free period of life. (find blessings in small things)
  • there is no plan to actually CURE her epilepsy, the plan is always to manage the seizures
  • Dr. Malik thinks that she might be having small seizures during the day that we aren't aware of…but testing will confirm this and it's not something we can deal with till we have the test results
  • The plan is to do a 3-5 day EEG (yeah, in FW…this is one of the most exhausting things for my brain right now), a PET-scan, and some other scans…more as he sees needed. They will have her off all of her meds so a seizure will most likely happen, which we need to see exactly what her brain does. Out of the 5-10 EEGs she has had in the last 5.5 years, I think this one might actually tell us something! (I may need my own brain doctor after being in a hospital for that long with her hooked up to cords…but I can't worry about tomorrow)
  • There is also the option of some seizure diets, but we'll get there after the tests as well…if surgery doesn't look like the best option.
  • He believes that the meds are lessening the intensity of the seizures, but the concern is that they are ramping up in number and frequency.
  • I'm most excited about going from 3 meds to 1…they don't prevent the episodes, but decreasing the intensity would be nice.
I think that's all I can think of at the moment. I'll update you as we find out more. I guess I'm back to blogging…we'll see. Please feel free to ask questions…or just help us think of more questions that we haven't asked yet!!

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