Good morning 
I may be in the wrong place and if so, I'm sorry. I'm a bit desperate for help with my daughter and my usual contacts aren't able to help with this.
Last January/February, my daughter (she just turned eleven last month) started having what appeared to be seizures. We suspected absence seizures - she would suddenly become still and her face would have a flat affect (almost as if someone had photographed her - she just looked empty). After a few seconds, but sometimes as long as one minute she would go back to what she was doing. Occasionally, her eyes would rapidly blink (excessively) or roll back in her head, sometimes her shoulder/neck/head would jerk to the side, a couple of times she lost control of her bladder, several times she wanted to sleep right afterward (or came home from school and went immediately to bed). The scariest one, she fell and her teacher caught her and she seemed to be having sensory disturbances (crawling on the floor sniffing it, taking off her glasses and pressing her hands to her eyes).
I need to add that my daughter has autism and therefore is considered to be at high risk for developing seizures. My daughter is non-verbal and considered severely impaired. She can communicate wants/needs, but not answers to questions. Seizures would not be surprising to any of us.
I took her to her eye doctor twice (she felt that my daughter was having seizures, but saw nothing concerning about her vision), our pediatrician felt confident based on the descriptions that she was having seizures and ordered an EEG. The EEG came back normal. We didn't have a neuro at the time, so i tried finding anyone to do another EEG. The next one was a 6 hour EEG (also normal). Then a sleep deprived EEG (also normal). We finally got in for an MRI (normal). All labwork came back normal. They decided that it wasn't seizures. I finally got in to see the neuro that has experience with kids with autism and he said that when I saw the next one, he would bring her in for a 72 hour EEG. However, by that point, June, the suspected seizures had stopped. During this time, we also started risperdol, but the seizures were happening during a time she was on no medication.
Things have been fine until two weeks ago when the school called to say that they suspected she had an absence seizure (different teacher and aide this year - the teacher has a child with epilepsy and the aide has worked with children who had seizures before). Yesterday, they sent a note home saying that it happened again, this time in front of the speech therapist and nurse, both of them also saying this was an absence seizure.
It seems to be following the same pattern as last year, but seizures shouldn't be "seasonal" should they? If we go through the same pattern, these will get much worse through February and March and then ease up.
Is medication the only way to treat absence seizures? Our neuro said that if we can capture them on video, he can diagnose without an EEG. However, we had a fairly frightening run-in with serotonin syndrome a few months ago and I'm very worried about medication, especially since she can't tell us if there are problems (the sero syndrome was discovered from behaviors and eventual testing showing that there was blood in her urine, etc from problems with her meds).
If anyone has any thoughts that might would help me, I would appreciate it. I realize that it may seem my question would be more appropriate on an autism forum, but I haven't found any help. I know the school probably thinks I'm a bit crazy but I want to wait to have the 72 hour EEG when these suspected seizures are happening more frequently (my estimation is the very end of February).
Thank you!
ETA - I wanted to add that during the absence seizure, they tried to get her attention by flicking their fingers towards her eyes to see if she would startle and she didn't. They usually try to get very close to her eyes to see if her eyes would blink from a reflex or something similar. But, she doesn't move in any way.
I may be in the wrong place and if so, I'm sorry. I'm a bit desperate for help with my daughter and my usual contacts aren't able to help with this.Last January/February, my daughter (she just turned eleven last month) started having what appeared to be seizures. We suspected absence seizures - she would suddenly become still and her face would have a flat affect (almost as if someone had photographed her - she just looked empty). After a few seconds, but sometimes as long as one minute she would go back to what she was doing. Occasionally, her eyes would rapidly blink (excessively) or roll back in her head, sometimes her shoulder/neck/head would jerk to the side, a couple of times she lost control of her bladder, several times she wanted to sleep right afterward (or came home from school and went immediately to bed). The scariest one, she fell and her teacher caught her and she seemed to be having sensory disturbances (crawling on the floor sniffing it, taking off her glasses and pressing her hands to her eyes).
I need to add that my daughter has autism and therefore is considered to be at high risk for developing seizures. My daughter is non-verbal and considered severely impaired. She can communicate wants/needs, but not answers to questions. Seizures would not be surprising to any of us.
I took her to her eye doctor twice (she felt that my daughter was having seizures, but saw nothing concerning about her vision), our pediatrician felt confident based on the descriptions that she was having seizures and ordered an EEG. The EEG came back normal. We didn't have a neuro at the time, so i tried finding anyone to do another EEG. The next one was a 6 hour EEG (also normal). Then a sleep deprived EEG (also normal). We finally got in for an MRI (normal). All labwork came back normal. They decided that it wasn't seizures. I finally got in to see the neuro that has experience with kids with autism and he said that when I saw the next one, he would bring her in for a 72 hour EEG. However, by that point, June, the suspected seizures had stopped. During this time, we also started risperdol, but the seizures were happening during a time she was on no medication.
Things have been fine until two weeks ago when the school called to say that they suspected she had an absence seizure (different teacher and aide this year - the teacher has a child with epilepsy and the aide has worked with children who had seizures before). Yesterday, they sent a note home saying that it happened again, this time in front of the speech therapist and nurse, both of them also saying this was an absence seizure.
It seems to be following the same pattern as last year, but seizures shouldn't be "seasonal" should they? If we go through the same pattern, these will get much worse through February and March and then ease up.
Is medication the only way to treat absence seizures? Our neuro said that if we can capture them on video, he can diagnose without an EEG. However, we had a fairly frightening run-in with serotonin syndrome a few months ago and I'm very worried about medication, especially since she can't tell us if there are problems (the sero syndrome was discovered from behaviors and eventual testing showing that there was blood in her urine, etc from problems with her meds).
If anyone has any thoughts that might would help me, I would appreciate it. I realize that it may seem my question would be more appropriate on an autism forum, but I haven't found any help. I know the school probably thinks I'm a bit crazy but I want to wait to have the 72 hour EEG when these suspected seizures are happening more frequently (my estimation is the very end of February).
Thank you!
ETA - I wanted to add that during the absence seizure, they tried to get her attention by flicking their fingers towards her eyes to see if she would startle and she didn't. They usually try to get very close to her eyes to see if her eyes would blink from a reflex or something similar. But, she doesn't move in any way.
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