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Safety during sleep for a child?
Fri, 06/02/2017 - 10:58Topic: Living With Epilepsy - Youth
My 6yo daughter was recently diagnosed with Benign Rolandic Epilepsy (BRE). She has had two generalized tonic-clonic seizures, both right after she fell asleep at night. The doctor also told us that seizures for BRE most likely occur at night. We have been letting her sleep in our bed since the onset, which is not sustainable longer term, and it will interfere with her normal development, particularly on independence. Putting her back to her own room, however, doesn't feel safe to me.
Just wondering how everyone is coping with nocturnal seizures? What are the best practices? What are the specific risks of a seizure and how to prevent/manage them?
From what I observed the last couple times, the tonic-clonic part, although frightening, seems manageable. I could make sure to clear sharp and hard objects around her bed, and install a motion sensor under the mattress to alert me. What's more concerning is her drooling part - large amount of saliva came out of her mouth, which I'm afraid could drown her without me by her side. However, such facial distortion would likely not trigger an alarm, so I would not be able to help in time... Anything I can do to mitigate this?
New to epilepsy and still learning to cope with this new situation... Any advice would be greatly appreciated!
Comments
My daughter was also
Submitted by HTACCHINI5 on Sat, 2017-06-03 - 00:00
My daughter was also diagnosed with BRE at age 6. Before diagnosis, I would lay with her so that she would not be alone during a seizure. That has now turned into my being in her bed every night. I will say that once the neurologist started her on Keppra her seizures have stopped-and yet I continue to lay with her because she asks. My thinking is that if she is so afraid to be alone, it is worth it for me to be with her. Soon, she will be old enough that she will not want me in her bed. I am just viewing this as another stage we as parents have to go through. I wish you the best and pray you find something that works for your family. I know how scary this is.
My mom kept a baby monitor in
Submitted by Misjoey101 on Sun, 2017-07-16 - 23:44
My mom kept a baby monitor in my room until I was 13.
Hi!My son is 6 and had his
Submitted by tdgutman on Fri, 2017-06-02 - 23:09
Hi!My son is 6 and had his first seizure at 5am in my bed last August. He always used to wake and come into our bed and it was never an issue. After his first seizure we were thankful he was in our bed. He began keppra and was good for 6 months and has now had 3 since February...all between 4:30 and 5:30am. Everytime, thankfully he has been in our bed. It all depends I what you are comfortable with. He does the same thing during his seizures you described with your daughter. We keep a video monitor on him and start him in his own bed. I've considered getting a band that is like a fitbit for seizures and sounds an alarm if the person has one. Maybe look into them? Good luck!