Today we went for Claire's video EEG. It will take at least 7 days to read, so we probably won't have news until the middle of next week.
The EEG itself started off quite rough. Claire had at least 2-3 seizures in the first hour, plus she had a number of episodes where she just kind of stared off with a blank look on her face and raised her arms. Nothing we did could snap her out of it. It was scary and disturbing.
Then, Claire went to sleep at around 11:30 a.m., and except for a brief period where she woke up to eat at 2:30, she has been asleep ever since. I attribute this drowsiness to the recent change in her seizure medication. We upp'ed her dose of Trileptal yesterday after she had 5 seizures between 8:00 a.m. and 9:00 a.m.
It hurts to have a baby that sleeps all of the time. I miss her bright eyes. I miss her coos. I miss playing with her. I know from experience that this sleepiness will be temporary. In a few days, she will get used to the increased dosage and be back to her "normal" self. Unfortunately, this may also mean that her seizures will come back. (That seems to be the pattern.)
Hopefully, however, with the new information from the video-EEG, Claire's epileptologist (a neurologist who specializes in the treatment of epilepsy) will get a better picture of her neurological status and be able to come up with the right combination of medications and dosages to suppress Claire's seizures on a longer-term basis. Unfortunately, from what I have read, if seizures cannot be treated with one medication, the chances that they can be treated with a second, third, or fourth medication go way down. Right now, Claire is on three separate seizure meds, so you can see where we are slowly beginning to lose hope.
If medication fails, there may be other options - like diet or surgery - but we're not quite there yet.
Through this, the one shining beacon of hope has been the love and suppport we have received from our friends and family. Please continue to pray for Claire. We desperately need every prayer you can utter.
Thinking and diligently praying for you guys!
ReplyDeleteDear Amy,
ReplyDeleteI am so sorry that little Claire is going though this. We are currently struggling with Bertrand's seizure control as well. The battle is draining for the entire family. I hope that you find a medication that works for her soon.
[For the record, Bertrand was on the ketogenic diet for over one year total (it eventually lost efficacy for him), but given his young age, it wasn't nearly as difficult as many people make it out to be! You could see good, quick results with Claire without a lot of the sleepiness.]
I look forward to following your journey and hearing what you learn from the Duke study! We already received preliminary results that are somewhat confidential but I look forward to sharing them when I can!
Sending you, Brad and Claire much strength and love!
Cristina
We continue to utter many prayers.
ReplyDeleteSo many prayers coming your way.
ReplyDeleteSending prayers your way. I have been following your blog for months now from Eliza's blog. I too live in Atlanta and if you ever need anything please don't hesitate to contact me. My heart goes out to you for all you have been through. Claire is a beautiful little girl and I hope they can find answers and a plan to control her seizures. Praying!!!!
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