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Is anyone else dealing with this situation? My daughter was diagnosed with epilepsy 8 months ago. All the seizures we know about have happened while she was sleeping. My husband woke up one morning when she was in our bed, and saw her seizing. She had another one later that day in the hospital, also when she was asleep. A few weeks ago, she had another seizure in the middle of the night. Her movements woke me, but only because I was tuned in to her and not very soundly asleep.

 

Looking back, I have questions. My daughter wet the bed until she was about 5 1/2, and never woke up when she did it...could she have been having seizures that whole time and nobody knew it? How many seizure might we have missed over the years?

 

I don't know how we will every feel comfortable letting her sleep alone again. Is there any type of monitor that can let us know if she is having a seizure? I have had a couple friends suggest a service animal that could alert us. Has anyone heard of this? Any ideas where I get information about it, or put my daughter on the list to get one?

 

 

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Teri Ann,

I was struck by how similar our stories are...it's uncanny. My daughter, Ally, had her first seizure while sleeping in April. We had hoped that it was an isolated incident. We called 911 and she was taken to the emergency room. She had been sleeping in my room because she had a stomach flu that week. I woke to noises and we found her in the post tyctal state. We saw a Neurologist who ordered EEG & MRIs nothing out of the ordinary was found. She told us that 70% of the time a child has a seizure it is a "one and done". We were hopeful. Unfortunately, she had another seizure in July. Again she was sleeping in my room because it was especially hot. This time I woke to find her convulsing. We again saw the Neurologist who performed another EEG and diagnosed her with Benign Rolandic Epilepsy. According to her these seizures occur at night. She has been taking anti-seizure medicine and I have her sleeping in bed with me.

I also found it to be a strange coincidence that Ally began wetting the bed after being successfully potty-trained. This bed wetting began around the time she was 5/6yrs old. Both seizures that we know of occurred when she was sleeping in our room. I am also haunted by the idea that she may have been having them all this time without our knowing. She too would not wake when she wet. I did see in researching online that there is a correlation between bed wetting and seizures. In fact some people, use it to identify when their child has had one. I also found it strange that in both cases that was the first question the Neurologist and MDs asked " Did she lose control of her urine". I told them it would be difficult to tell since she wears a pull up for bed wetting.

I too feel scared to let her sleep alone. I did hear there is a bed alarm and also there is a special pillow you can purchase. I haven't purchased them yet but with the school year approaching I am going to do more research. I will let you know what I find. She has not had any more seizures since taking the medicine so we are encouraged.

Is your daughter been diagnosed? Is she taking anti-seizure meds? I will keep you posted on the alarm & pillow. Can you please let me know if you find any more information. I was consoled to read your story to know that other moms are struggling with the same issues. Keep in touch.
Hi Nancy,

I would be really interested in any information about this alarm or pillow. If you do get them, let me know how they work.

Kaitlyn has had three seizures that we know of. The first two were the day after Christmas. She was put on Keppra and it seemed to be working until one month ago, when she had another. Doctor increase her dosage, but now I feel like I am just waiting for this dosage to become uneffective, too.

She was never completely potty trained at night, but there was a point when the bed wetting was an occasional occurance. But for a couple years before the diagnosis, it was a pretty normal event. Interestingly, she only lost control of her bladder during one of her three seizures. I wonder if it she was having seizures, and perhaps peeing during the post tyctal state.

She sees the neurologist again next Thursday. I am told he is one of the best, but he has no bedside manner. I have yet to get information from him about a particular type of epilepsy or seizure she has. I plan to ask some pointed questions next week and push for some specifics. Hopefully, I will get some clear answers. I homeschool her, so at least I don't have to worry about school issues.

Thank you for sharing your story. I really helps to know I am not alone in this strange world of epilepsy.
I have had seizures in my sleep from when i was 10. I'm 21 now and still have them in my sleep. Sometimes there can be signs to look out for before your daughter goes to bed. Daydreaming, feeling light headed or ask her to close her eyes and see if jerks slightly. These are signs that i have noticed on myself. If you need to ask anymore questions feel free to do so.
First of all let me say you are not alone. Our daughter has had seizures all of her life. She is now 20 yrs old. There were many nights that she did end up in our bed at night when she had a bad night. A lot of her seizures have been during her sleep. I sleep soundly, my husband does not. When he is not home I am more self-conscious and hear her more. We finally upgraded to a king size bed a long time ago just because of her in bed with us. She does not do that any more. We go to her if she is seizing. We basically use a baby monitor to hear her. Her room is not far from ours though. She also has a service dog. She does not alert Anna to her own seizures but she responds to her when she has a seizure. It took us a long time to find her. I researched the internet for a long time and filled out several applications. We got her from Indiana at Midwest Assistance Dogs.It depends where you live and the needs of your daughter on how fast you may be able to get one. They are also expensive but the companies usually assist you with your fundraising for them. Go to the internet and type in seizure response dogs or service dogs and just start looking. That is what i had to do to find Brittany. We have had her for 3 years now and her and Anna have bonded very well and she protects her. Good luck!

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