Late onset of a seizure disorder?

Mandy - posted on 04/09/2009 ( 3 moms have responded )

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My daughter is 8, almost nine. She started having seizures in her sleep a little over a year ago. At first we thought it may be sleep apnea, and that the shaking was her body's reaction to lack of oxygen. Then, this past September, she had one at school. She was sitting in her desk, and just kind of tipped over onto the floor. The seizure lasted less than a minute, and Jaci was a little groggy for about an hour after. We went to the emergency room where they took blood and did a CT. Both normal. Physically she was normal as well. A few days later we had an EEG, also normal. We saw a neuro who said she would most likely grow out of it, to watch her and come back if there was more activity in 6 mos. We went 4 mos without seeing any activity, unless it happened when we weren't with her at night. In January she was staying at grandparents' house and had three short ones in one night, but woke up in between. In early February, Jaci got out of bed to turn off her alarm. She was walking back to the center of her bedroom when she fell over. She seized for about a minute and couldn't talk for thirty seconds after that. Two days ago, she did something similar, but longer and with more movement. After the shaking was over, she got a bloody nose (this is not unusual for Jaci), and cycled between sleep and screaming for about five minutes. When she was finally able to respond to me, she was unable to tell me what day of the week it was and could not sing her abc's without getting mixed up. But she knew she was messing up and kept saying she was sorry and starting over. At first I wondered if she had a concussion. Jaci has not been confused like this following a seizure before, but the ER doc told me it was very normal. They prescribed a suppository I can use if she has a prolonged seizure again. Our biggest problem is that the neuro we saw in September is no longer in practice, and he was the only peds neuro in the entire state. We've been working with docs from Denver, and have finally found one who comes to MT once a month. He works with a PA in Billings, who we will see next week.



I'm wondering if anyone else has a child whose seizures didn't start until later in life. Also, I would love to hear some of the pros and cons to all the meds. We've been operating under the assumption that she will grow out of it, also that hers are fairly mild, probably sleep related, and very infrequent. We have not gone with medication to date because of that. At what point do we change course? I know that what we're going through is not nearly as extreme as some of your stories. My heart goes out to every mother and parent that goes through what I went through on Tuesday, every day of your lives. May God bless each of you.

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User - posted on 04/10/2009

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Your daughters story actually sounds verysimilar to mine. My seizures were only picked up when I had one in the middle of feeding my 2nd daughter when she was a baby, although I am possitive in hind sight that I have been having them in my sleep for a long time and have been suffrering petit mal seizures (I don't actually start fitting, I just loose conciousness) since I was a child and they are almost certainly sleep related. I am actually from England and it sounds like treatment is quite different here. I was put on medication after I had my 2nd seizure and although I was not happy at the prospect of having to take medication for the rest of my life I have actually been fit free for over 18 months now. I really do feel for you and Jaci, I know how distressing it can be. I hope that you all find a solution that works xxxx

Mandy - posted on 04/10/2009

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With Jaci's nocturnal activity, we didn't really even notice any post ictal issues, except tiredness.  But with the daytime seizures, she is a totally different child. Were the neuros able to see anything at all during the monitoring.  One of the ones we talked to wants us to try to video her, so we are going to try to work that out ourselves.  I think it's stupid, however, because we do have excellent sleep and neuro centers in Montana.  Why not just order some long-term monitoring? I do know that I am getting very frustrated with the lack of help, and that Jaci is feeling scared and pent up because we're not letting her on playground equipment or her bike right now. Has your son had any head trauma that they think may have brought it on? They keep asking us that.  Thank you Beky for your support and words of encouragement.

Beky - posted on 04/10/2009

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Mandy,



My son started with late onset at 8 also. He's been having nocturnal seizure activity for almost a year with post ictal issues including aimless wandering around the home, urgently trying to talk and being completely unable to communicate.



The ped. neuro told me he'd grow out of it too. We have spent days and nights in the hospital doing video monitoring and I assure you that I do not feel comfortable with the "he'll grow out of it" scenario.



My boy is currently unmedicated...not by my choice although I was medicated for seizure disorder for several years.



Anything I can help with, please let me know.

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