Hi,
My 9yo daughter was just diagnosed with complex partial seizure. It all started about 18 months ago. Emilie would complain about her lips and tong “not working”. She was drooling and could not talk but was fully awake. This would last 10-20 seconds. I would just massage her jaw muscle and it would stop. So we took it as a jaw muscle cramp or something like that. She did that maybe 10 times over a year.
In August (this year) we were driving back home around 10pm on a Friday night when I saw my daughter’s hand waving between me and my wife. I open the light and look in my mirror to see that she was having one of those episodes with her mouth. But this time the right side of her mouth was “twitching”. It lasted about 30 seconds. She did the same thing the next day. About to fall asleep it happen again and she banged on the wall of her bedroom to call us. At this point we knew there was more and we went to the doctor. She first had an MRI which turned out clean.
One Friday night after a stressful week for her (friends problem) she did her first and only full seizure. She has been sleeping in our room since the back to back episode in August. We were all about to fall asleep and woke up from her making noise. This time she was passed out. Her right arm and leg were mildly convulsing. Once we were passed 1 minute into it we decided to call 911. It finally lasted 3 to 5 minutes.
We saw the Neurologist and he put her on Carbamazepine right away (100mg). And the day of the EEG he showed us he saw ‘uncontrolled’ activity and increased it to 200mg.
So far the only side effect is that she feels sleepy mid morning (She takes half her dose morning and half at night). Her school grade were good so we thing she did have too much “absence” during the day.
Since 95% of her episodes were as she was falling asleep we are having a hard time returning her to her bedroom. Even more one of us stays in the room (reading ) until she is sound asleep (mostly until it’s time for use to go to bed. Would a monitor be enough? What if we don’t hear her? It’s thought because in the past she could be 3 to 5 months episode free.
Also I feel the doctor is quick on the medicine. We are supposed to see him in a month. I hope he won’t want to increase the dose again. Does anyone have a similar situation? What should we expect? Even thought things were getting worse, will the medicine stabilize it?
My daughter is taking it very good. She’s always been positive and enjoying life. That has not changed.
Thank you for reading me. I would appreciate if you could answer some of my questions.
Facing the unknown is always scary. But reading other people story I can’t see we are not so bad.
Thank you, Martin
My 9yo daughter was just diagnosed with complex partial seizure. It all started about 18 months ago. Emilie would complain about her lips and tong “not working”. She was drooling and could not talk but was fully awake. This would last 10-20 seconds. I would just massage her jaw muscle and it would stop. So we took it as a jaw muscle cramp or something like that. She did that maybe 10 times over a year.
In August (this year) we were driving back home around 10pm on a Friday night when I saw my daughter’s hand waving between me and my wife. I open the light and look in my mirror to see that she was having one of those episodes with her mouth. But this time the right side of her mouth was “twitching”. It lasted about 30 seconds. She did the same thing the next day. About to fall asleep it happen again and she banged on the wall of her bedroom to call us. At this point we knew there was more and we went to the doctor. She first had an MRI which turned out clean.
One Friday night after a stressful week for her (friends problem) she did her first and only full seizure. She has been sleeping in our room since the back to back episode in August. We were all about to fall asleep and woke up from her making noise. This time she was passed out. Her right arm and leg were mildly convulsing. Once we were passed 1 minute into it we decided to call 911. It finally lasted 3 to 5 minutes.
We saw the Neurologist and he put her on Carbamazepine right away (100mg). And the day of the EEG he showed us he saw ‘uncontrolled’ activity and increased it to 200mg.
So far the only side effect is that she feels sleepy mid morning (She takes half her dose morning and half at night). Her school grade were good so we thing she did have too much “absence” during the day.
Since 95% of her episodes were as she was falling asleep we are having a hard time returning her to her bedroom. Even more one of us stays in the room (reading ) until she is sound asleep (mostly until it’s time for use to go to bed. Would a monitor be enough? What if we don’t hear her? It’s thought because in the past she could be 3 to 5 months episode free.
Also I feel the doctor is quick on the medicine. We are supposed to see him in a month. I hope he won’t want to increase the dose again. Does anyone have a similar situation? What should we expect? Even thought things were getting worse, will the medicine stabilize it?
My daughter is taking it very good. She’s always been positive and enjoying life. That has not changed.
Thank you for reading me. I would appreciate if you could answer some of my questions.
Facing the unknown is always scary. But reading other people story I can’t see we are not so bad.
Thank you, Martin