This afternoon I heard back from the neurologist, after leaving two messages begging him to call before I head out of town for the weekend. The conversation went a little like I expected, but it's easier to expect something than to experience it. He did confirm that there is a great amount of abnormal activity on the EEG and that the activity is "indicative of Absence Seizures", but he added that not only does she have a high frequency of seizures while awake, she has an even higher frequency of them while sleeping--abnormally high. So, the take-home from the conversation is that my daughter seizes all night rather than sleeping. Although this sheds light on her volatile attitude, it also makes me very sad to know it's been a long time since she's had a good night sleep.
Our path now is to speed up the titration of the seizure medication so that rather than one in the morning and one at night until we see him again at our next appointment, which was August 14th, we now go up to one in the morning and two at night on Sunday, then two in the morning and two at night next Thursday.
Also on Thursday we have to be at the hospital by 6:30 am for an 8:00 am sedated MRI. I'll update on that process another time, but after she's out of sedation and cleared to leave which is expected to be at 11:00 am if all goes well, the doctor asked that we come straight from the MRI to his office. This is one of those terrible doctor's appointments when rather than scheduling it, they just ask you to come to their office to talk. I'm sure you can guess how Joe and I feel about that.
The doctor closed our conversation by saying he's hopeful and that he thinks the medication at some point will be able to stop the seizures, we'll just have to see how much medication it takes. Needless to say, I left work a couple hours early after talking to him and went home to just cuddle my daughter--who by the way came down with a fever yesterday after getting up at 3:00 am for her test. So now she's not only epileptic but also sick. On a good note, Wendi is over the cold and enjoys reminding us, we're sick and she's healthy.
Tara, this may be little comfort, but Michael (our oldest) was on Depakote for 10 years. Though it is for a different reason, it's not caused damage to his kidneys, and his highest dose was 500 mg in the morning and 500 mg in the evening.
ReplyDelete((hugs)) Sophie is a beautiful soul, you can see it in those deep eyes of hers. She, you, and Joe will really be ok <3
Thanks Steph. It does help to know that his body stayed healthy through it. That's twice what she'll be on a week from today. That was one of my first concerns about the med but I'm sure the benefit outweighs the risk or it wouldn't be used.
DeleteTara... thinking and praying for all of you. I will follow your journey sweetie!
ReplyDeleteMy heart goes out to you, Sophie, Joe and Wendi. I can't imagine how hard this is on you, as you continue to learn more and understand her condition. Hugs, positive thoughts and prayers are coming your way. I will continue to follow your journey. I'm sure one day you will look back on these entries and see just how far she's come!!
ReplyDeleteSaying prayers for Sophie, you, Joe, and Wendi. May you all find the strength you need and find the right dose of meds to stop the seizures.
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