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wyboemail
9 year old son with BRE and he is sleeping with us because I am to afraid we will not hear him in his bedroom if he has seizure.
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Since March of 2007 our son has been in our bed. I am to afraid we will not hear him if he has a seizure. He is also afraid to sleep by himself. Needless to say this is putting a strain on my wife and I relationship. ;)
He was diagnosed in March of 2007 after we found him laying on the floor in the hallway having a gran mal seizure. He said he was trying to get to us but could not. He said he could see and hear us when we were trying to help him. He told us he thought he was dieing. That comment has ripped my heart out and that is why I am having a hard time with this.
I am looking for other parents who may have had these same issues and how they solved them. We have a baby monitor but I do not trust we would wake up or he would make enough noise. I am thinking about a slow adjustment with putting a mattress on the floor of our bedroom and having him sleep there for a while until he and I become more comfortable and then moving him back into his own room. Looking for any suggestions for being able to hear him if he has a seizure.
Please email me at wyboemail@yahoo.com with any suggestions.
Thanks you,
Curt
Recent Comments on this Discussion
I totally understand. My wife and I haven't had a good night sleep since our daughter was diagnosed with Dravet syndrome. I recently posted a discussion topic about a night time bed seizure alarm made by a company called Emfit. It sounded like a great thing unfortunatly the FDA denied approval. I'm still not sure why, but it is something parents like us need to fight for answers to. The alarm will still be made available under a different description for $850.00 plus s&h. If your interested you can go to www.emfit.com. Good Luck!
The FDA just 'denied' it because there had not been enough testing on it in the US. So, they are marketing it as a Movement Detector and working on the testing. I have one and it works great for us. I would highly recommend it. www.emfit.com. Contact their California office. They are super. Very family focused and want to do the right thing for the customer. This device has given us amazing peace of mind, so don't get frustrated just because it is not FDA approved. It is the only movement device that has gone in front of the FDA. Amy L
I can totally understand how you're feeling, although our daughter is a bit younger than your son (she's 4.5). We have always co-slept with her, so it wasn't an issue of transition, but we both still feel more comfortable with her in our bed or at least in the bedroom since 3 out of 4 seizures happened around 6am while she was sleeping. She was in status epilepticus last summer for 45 minutes, and although she has been seizure-free while on Keppra since then, we both sleep better knowing she's right in between us.
Is intimacy more difficult these days? DEFINITELY!! We also have a 2.5 year old and a 4-week old baby, so it's hard anyway, but we've had to be more creative with locations. Not ideal, for sure, and not enough together/cuddle time for me, but I don't think either of us would be OK with her in her bedroom (right next door to ours.).
Friends/family know that we all sleep in the same room and often joke about when we're getting another king-size bed for the room, but for us, we wouldn't feel OK having her anywhere else. Lately, she's been sleeping on her trudle bed mattress on the floor of our bedroom, which is OK...she usually makes strange clicking noises in her mouth while she's seizing, so I think I'd be able to wake-up from that noise. I actually feel better with her in between us, though, since my husband is a lighter sleeper than I am--last time he woke up to her "dreaming," which was actually her seizing in her sleep....legs and arms moving rapidly.
Long story short...maybe check into the seizure monitors I have been told are out there or get a baby monitor...but really, I think you're doing the right thing. You just have to realize how it infringes on your private time and make room for that somewhere/some time else.
Good luck!
Sarah from NY
Was it you that had info on a mat that fits on the mattress that alarms if there is rapid movement (seizure). I cannot find the info someone sent me on that. Our insurance company does cover durable medical eqiopemnt so I wanted to get info about it. How are things going for you guys? My son has acid reflux now probably due to the keppra. Doctor said to give him the 14 day dose of prilosec and hopefully that will help him. He has missed so much school with tummy aches and dr. appointments. Thanks, Curt
Our son was diagnosed with BRE in December of 07, and we all slept in the bed for a month and a half after that! I bought a seizure monitor and, successfully, it has alerted to one seizure so far in the middle of the night.
I can't immagine how we'd sleep without it. It is not just for us as it gives him peace of mind, too.
what type of alarm do you use for your son??
Sarah from NY,
We are not co-sleeping, but I wanted to reach out to you to find out about your experience with Keppra. We have three daughters, 8 (almost 9), 5, and 4 months. The oldest was diagnosed with BRE when she was six. Until last summer there were no major issues and she was not on medication. In June she had a bad seizure and fell out of bed, smashing her face on the floor. After that incident we put her on Trileptal. Unfortunately she had a very severe allergic reaction which almost put her into liver failure and she spent two weeks in the hospital. As you can imagine, since then we have not had her on anything. The new neurologist wants to put her on Keppra which goes through the kidney but we are concerned about the side effects. Has your daughter experienced any side effects? The stuff we read on line is horrifying.
Beth - Mom to Emily, Elizabeth, and Lillian
I just read your entry and wanted to respond even though my daugther isn't on Keppre. My daughter is nearly 8 and was diagnosed when she was six as well. While one neurologist wanted her on medication, the other one gave us the choice. We decided to try the recommended Trileptal during the summer before school. Our daughter seemed to struggle with school work. It could have been the more difficult cirriculum but my husband and I couldn't help think it was the medication. We took her off after only two months of being on it. She still has seizures now and then in her sleep. Every time my heart sinks but I have to remind myself she is okay when she goes through them.
I had to write because I just found this site yesterday and it's such a relief to read and hear that I'm not the only Mom feeling what I feel. I worry about whether to medicate. I worry about the day when sleepovers are going to happen. I don't see how I can let her go to one, yet, she doesn't even know she's having these seizures. I worry about the day she goes on a sporting trip and falls asleep. Do you think about these things?
Hi, Glad you found the site. It has helped us deal with the many ups and downs. My son has never wanted to sleep at someone elses house even before he had his first seizure. Now that we look back maybe he knew something. ??? He has friends over to our house and he has fun. The few times he has tried to stay at a friends house he does not go to sleep. He will stay up all night. The parents say to us that they are sorry if he is tired but he just stayed up all night watching tv. I think he just knew. If the medication is needed do not hesitate to use it. Epilepsy is not as non threatning as the doctors tell you. Not to scare you but you need to educate yourself about SUDEP. Some reason the Doctors do not want to talk about this.
Good Luck and stay in touch.
Beth,
My daughter is currently on Keppra and we will be changing her over to Lamictal. I like the way Keppra works but the behaviors have not been so great. Keppra is knows for causing some bad behavior problems. If it wasn't for that, I would be very happy with it. We can't get to therapeutic dose because the behaviors are getting so bad but every child is different, some handle it very well others not so much. Good Luck with your decision.
Grace