I haven't blogged in a LONG time because I guess from day to day, nothing much seemed "blog-worthy." But looking back over the last year--- SO MUCH has changed.
It's been a really tough week.....
A year ago, on April 1st, 2012, we went to Vanderbilt for Kennedy's routine checkup with the Neurologist. She had been doing so well that we had planned for an EEG this year (on Monday) and if Kennedy continued to not have seizures and the EEG was normal, we could start weaning her off her seizure meds. It would have been the first time since she was 7 months old that we would not be taking medicines multiple times per day...... But several months ago, Kennedy started having petit mal seizures many, many times each day. Within the last couple of months, they have increased her medicines twice-- but the seizures continued.
So Monday, we went in for our scheduled EEG. They were able to trigger a seizure which was the first time she has seized during any test which was a good thing. But my mom and I were able to watch the test results on the computer and noticed that she was having spikes of activity every 10-20 seconds. According to her neurologist, these "sparks" are seizure activity, but not all of them turn into seizures that we are able to see. This has been terribly upsetting because although we have seen LOTS of seizures, we had no idea she was seizing that much!
As we were talking to the doctor, I had big decisions to make on the spot. We could increase one of her current medications which would control both the petit mal (Depakene) and the complex-partial seizures (Keppra) (both controlled with Depakene alone-- that sounded great because we'd be able to stop the second medication!)......BUT there were concerns. First, higher doses of Depakene would cause tremors-- and since she already has pretty bad tremors, they would get worse and she would have trouble holding things in her hands. Not good! Plus, if the medication was able to control her seizures, she could not use it long-term because it could cause liver damage/failure.
Our other option was to keep her on Keppra for the convulsions-- but stop the Depakene (since it causes liver problems long term) and add Zarontin which is a medication that is specifically used to treat petit mal seizures. That sounded like a good plan, but there was a catch. Kennedy had been on this medication about three years ago and had terrible nightmares while she took it. She would wake up screaming every night.
How could I make a decision like that so quickly? Should I give my child a medicine that could damage her liver? Or do I give her medicine that I know is going to give her terrible dreams? I'm sure it seems like an easy decision, but until you are in that position-- you have no idea! I felt like no matter what choice I made, Kennedy was going to suffer. So I asked the Neurologist what he thought would be the best bet and he said he'd like to try the Zarontin because he only knew of one other patient that had nightmares from the medicine and since Kennedy was older, it might not be a concern.
So I took his advice and agreed to the changes. We started weaning her off of the Depakene, giving her an increased dose of Keppra and added the Zarontin. Yesterday was the first full day of Zarontin and she woke up screaming last night and saying a witch was after her. I pray this was just a coincidence she had a nightmare after starting the medicine, but we'll have to wait and see. The doctor wants her to try this medicine for at least 2 weeks to see if the nightmares stop. If we are unable to get the seizures to stop, we may have to spend the night in the EMU (Epilepsy Monitoring Unit) at Vanderbilt.
I was certainly hoping for a different outcome from our visit, but seeing all the seizure activity on the EEG was heart-breaking. Please continue to keep Kennedy and our family in your prayers. This is not an easy circumstance to go through.
She is my hero! So brave!!
As my dear friend, Champ has nothing on my tough little girl!
She definitely deserved a trip to Build a Bear after our visit-- and now she wants to wear her new bear's glasses all the time. Who couldn't love that sweet face??
She is precious, and I will pray the meds will be effective for her little system and that she will not have nightmares on a continuing basis! Blessings to all of you,
ReplyDelete