I debated about whether or not to post about this until we know more but then I decided that any extra prayers couldn't hurt. We were told to always be on the look out for seizure activity in Anna. We were also told that if she made it to age 2 without any then we might have escaped them. Anna is 2 1/2 and so far no seizures so I was pretty sure we were home free...until yesterday. I got a call from the daycare that Anna was complaining of a stomachache. I had them turn her pump off and then went and picked her up. Her teacher told me what transpired after the pump was off. I thanked her and went on my way, not really too concerned but glad they called me. We headed home and on the way home Anna started saying,"Kacy, Kacy, Kacy..." almost like a chant. She then let out a horrific sounding scream, stared blankly out the window, and then fell asleep. I thought it again was strange but still was not too concerned. Then on the way to dinner last night she repeated "Mama, Mama, Mama..." like a chant again, let out the scream, and began the staring but this time she got kind of rigid in her car seat. We were all yelling at her and talking to her and got no response from her. She then went to sleep again. After the third time I could no longer deny something was happening. Kenneth agreed after seeing her. I called the neuro's office today and he said it sounds suspicious for seizure activity. She will have a sleep deprived EEG on Tuesday and until then we are just to watch her and report anything else that happens. I am not really afraid because even if it is seizures I know she will be ok and that this is just another bump in the road. I also know we could use any extra prayers we could get though so if you have a second could you send one up on our behalf?
Saying one right now! You know, when you first described it, I thought maybe it was a migraine. You are being very smart about the whole thing. Charlie has medication and is high risk and we have been very blessed--it's been a long time since we've seen a seizure (knock on wood). No point getting worried before you have to.
ReplyDeleteI'll be saying some prayers for Anna. I worry about seizures all the time, but you're right...there are so many good meds out there now and the vast majority of people get them under control easily. I hope the sleep deprived EEG goes smoothly. How long does a little one have to go without sleep? I had one and had to stay up for 24 hours! It was hard.
ReplyDeleteThanks ladies! They told us we could put her to bed between 11-midnight and then get her up at 4. I am debating about just not giving her the trazodone we give her for sleep and then she'll be up that much anyway. Luckily Kenneth took off work tonight so he will stay up with her and then I will take her tomorrow. She had one staring spell yesterday but it was short. We live 1.5 hrs from the hospital so I am not sure how I will keep her awake on the way there though. I will just do my best, like always, because that is all I can do!
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