If you are on facebook you know that Mairead had an EEG at Children's Hospital today. We are pretty sure that she had what is called a focal seizure or absence seizure the other day. No convulsions, spasms, etc, but her head and eyes drifted to one side and her eyes were just vacant. Her arms went limp and no matter what we said to her or how we jostled her to try to get her attention, it was like she "wasn't there." My mom, who you know is a nurse, witnessed it and was pretty sure of what she was seeing. I have actually seen her do this before, but always thought she was just spacing out for 15-20 seconds. Wednesday, though, she was 'gone' for probably a full minute and it was pretty obvious that something was not right. It didn't bother her and she seemed to just 'snap out of it' on her own and go back to what she was doing.
Obviously this is a concern, particularly given her history. I put in a call to her neurologist yesterday and they got us in for an EEG at CHB today. We don't have any results and won't until next week when we see her neurologist, so we are just waiting at this point.
The good news was that she was AWESOME for the EEG. I was afraid she would freak out and be so upset, and that she would have to be restrained, etc. She was incredibly patient while the nurse placed the electrodes and she was quiet and calm during the entire process. I was SO proud of her. She normally has so much anxiety about doctor's appointments that I was prepared for the worst. But she never ceases to amaze me and this was no exception.
If she is, in fact, having seizures, this is a major blow. The seizures she had as an infant were directly caused by the clot and we thought that once the clot dissipated, we would not have to worry about seizures any more. She has never been diagnosed with any kind of seizure disorder- the ones she had that one day were isolated. Now, however, we may have a whole new cause for concern. Her MRI in July did not show evidence of any clots, so that is reassuring. We just have to wait and see what her neurologist has to say.
Hopefully we are wrong and what we saw was not a seizure, but it was clearly not 'normal,' so something is up. If it was a seizure, hopefully it was not a precursor to anything more serious or a symptom of a more serious underlying cause.
Thanks to all of you who called, left messages, texted, etc. We really appreciate your support through all that goes on with us and with our kids. People have asked how we are doing... the honest answer is that I don't really know. I know that I am stressed and upset and scared for my little girl, but I can't really give in to any of that- we have three kids to take care of and we want to enjoy every second with them. On some level, I am angry that Mairead has to deal with all of this. I am scared for what her future holds and my head is spinning trying to think of what the next step is for her. We have to deal with each day as it comes and we will try to do that by playing with our kids, trying to raise them as happy and kind individuals, giving them all the love that we can, and trying to make the right decisions for them. We just hope that whatever they tell us about Mairead, we can take steps to make sure that her life is as happy and full as any other little girl's life.
We will update everyone with any information we get, though I don't know when that will be. I truly appreciate all of the individual messages people have sent and I hope to be able to respond to each of you soon. Thank you.