Night time seizures....how do you cope?

[carole2k]

My 9 year old daughter was diagnosed with epilepsy two years ago. It is fairly controlled with Keppra. She had two break through seizures a couple weeks ago, both right as she fell asleep. I caught the first one and the second she was sleeping in our room because of wind storm so I saw it happen. I hardly sleep at....all... We have a baby monitor but I am so exhausted my fear is what if I hadn't heard her? would she had seized and gone into postictal without needing me? She is a stomach sleeper and sleeps on a fairly flat pillow. Would she smother? Would her body have forced itself to breath? Ugh. I am a mess. Anyone else feel nervous about this and what did you do to help?

 

[ohioman212]

Hello, I'm sorry to hear about your daughters seizures. Would it be possible for her to sleep on her side? It would be much safer.

What type of seizures does she have? It is perfectly normal to feel nervous about something like this.

 

[carole2k]

She always starts off on her side but somehow always manages to roll onto her tummy. Sigh.

 

[ohioman212]

She always starts off on her side but somehow always manages to roll onto her tummy. Sigh.

Although I know it doesn't offer any comfort, technically, having a seizure in your sleep is the safest time to have it, as your risk of physical injury is seriously reduced.

I personally wouldn't bother with a epilepsy alarm (One of those devices that sounds an alarm from increased movement) as you will be up all night from false alarms and it will eventually be thrown away.

YMMV though, I am close friends with a girl who has severe epilepsy and study CNS disorders for fun (Weird, I know) however I am not a doctor.

 

[dragonlady1978]

I am still not willing to let my 5 year old sleep in his own room because he has a large percentage of his seizures at night.

I know the feeling. September he had his longest seizure ever and he stopped breathing. I happened to have him on the couch and saw when he started seizing. He didn't smother on anything, he just couldn't draw a breath and turned blue. Called EMT held him on his side and lost my mind in those few minutes, but he breathed on his own before they got here. Everything turned out okay, no long term damage to anything but my sanity and I have obsessed over those what-if's myself. Ever since that incident I am not only nervous lol, at times I am barely reigning in hysterical over worry and sleep deprivation.

I literally watch him sleep, I want him close enough that I can feel or hear his movement. I know that isn't really plausible to do with an older child, I already get lectures that he's too old to sleep with me now. I honestly have no idea what I'm going to do in the future, but I think you are on the right track with a baby monitor. I'd also make sure there isn't a lock on her bedroom door, just in case you do hear something and need to check on her.

I'm the last person able to tell anyone not to worry, but the statistics ARE on our side. SUDEP is rare. Most seizures won't last long enough to cause suffocation on any bedding, even in the case that it were a danger. I have been contemplating these issues myself, and I am looking into buying an anti-suffocation pillow. There are a bunch marketed as epilepsy/seizure pillows, I think it will give me some peace of mind.

 

[tripletdad]

I had diagnosed at the same age too, that was 34 years ago. I am proof that the stats are on your side. But I know how you feel my boys were born at 3 pounds (15 years ago) and sent home by the insurance co at 4 pounds. My wife and I were so nervous (as they did have some health issues at that time) that we eventually set up a pen for the 3 of them to sleep in right in our room. That lasted for 2 years. My suggestion is to do what makes you feel comfortable, but also get some SLEEP yourself as I think there is a greater issue of you being tired and unaware of any changes conditions or behavior in your daughter.

Just my 2cents.

 

[Faithsmom]

We are just starting down this road now with our 3 year old. She was born with lack of oxygen which resulted in a severe brain injury. At 1 she started having seizures. They were just small focal ones at first, and we had her on phenobarb, as that is what they said that babies generally are prescribed. The med worked fine, but her behaviour and development changed drastically, so just before she turned 3 we switched over to trileptal. She would always start a seizure just as she was falling asleep or waking up. She has never slept through an entire night, but sleeps fine during the day.
I can relate to the not sleeping thing. We now put her to sleep with us, either on the couch or in our bed and we watch her for most of the night. Her seizures have changed from focal to grand mal (I don't know all the proper terms yet) and they are starting to last longer then 20 minutes. I am so scared to leave her in her own bed knowing that we can't hear when a seizure is happening. It is really frightening. In one sense, I am glad to know that I am not the only one out there dealing with this, but sad in the other sense that others are feeling the same as me.
This parenting stuff is hard. We are now looking at changing her diet, her activities or her medication again.

 

[tripletdad]

That sounds so scary. Hang in there, the effort is well worth it. I was on pheno when I was young too, it was tough. Just be careful when switching E drugs. I am sure you doctor know what he is doing, but I would stay on top of it b asking questions regarding dosage and coming down off of one drug and onto another.

I think its a good idea that you keep your daughter close so you can monitor her.