Advice on monitoring my 11 yr olds

[KimHen5]

My daughter Ellie has tonic clonics & I believe myoclonics early morning, like 4:30am - 7am. We've only had the dx on E for a couple weeks & we have an appt with the Neurologist tomorrow for her MRI & EEG results (stressing!). I believe we will receive a dx of Juvenile Myoclonic Epilepsy & hopefully keep a handle on the seizures with her Keppra.

My question is this -- how do you all keep an eye on your children to know if they're having seizures in their sleep? For now I've just sleeping on the floor next to her bed & basically staring at her from 4 am to 7 am. Do others use video baby monitors or what? The thought of not knowing she's having a seizure scares the crap out of me! In 2 of her t-c she wet the bed so we would obviously have known those times, but in other t-c she's barely made a sound.

Thanks for your help!

 

[Silat]

I guess a baby monitor would work. You could also wire a webcam to transmit video to your room so you don't have to sleep by her.

Side note: You live really close to me.

 

[KimHen5]

Well hey Silat, you could come relieve me a couple nights a week then! : )

I really like the idea of a video monitor but I guess I'm just worried I'll still not see or hear it? I had a scary t-c a few days ago where she ended up going off the other side of her bed. So now I'm thinking bed rails definitely. But if I miss some seizures because I'm using a monitor, I'm worried we won't get her Keppra dosage correct. We believe she's been having these for some time but due to the time of day we missed them. : (

 

[Silat]

I suppose if you're a stay-at-home mother, you could modify your routine to watch the monitor during those hours, then take a nap during the day.
If you're working though, that's probably a bad idea

Though, I'm curious, is she not aware that she's had a seizure when she wakes up? Every time I've had a T/C in my sleep, I'm well aware of it upon waking....

 

[KimHen5]

I actually do stay home but was planning to return to work when school resumes this fall. And no, she has no memory of her t-c at all! She is shocked & the upset when we have to tell her : (.

I was under the impression this is common with t-c?

 

[Silat]

Well I don't remember the T/C itself
But when I wake up, I have post-seizure effects that slowly wear off over the course of the day, and I feel like I never went to bed. My muscles are also quite sore and I'll typically have a bruise I didn't have the night before. Pretty good signs that I had one in my sleep.

Is it needed for you to be present for every seizure? I mean, would it be possible to record that timeframe then review it later and see if she had a seizure? That way you'd also have video to show the neurologist if you're so inclined.

 

[KimHen5]

Dunno! I'm a pretty hands-on mom so I guess I just feel I need to be there so she doesn't injure herself? I mean I realize I can't go to college with her & sleep on her floor (hey wait! Maybe I could!) but I think for now I'd rather be a little overly protective than the alternative?

I was hoping that maybe I was missing an obvious solution that others had found?

 

[Silat]

I'm curious what others have to say about this, because I don't have any kids myself I don't know first-hand.

I would recommend not sleeping on the floor of her college dorm though!

 

[Nakamova]

A good audio baby monitor might be sufficient. Often someone having a tonic-clonic makes a what sounds like a scream at the start of their seizure. (It's actually a sharp intake of breath to send oxygen to the brain). The breathing afterwards can also be noisy and labored. So if you're not too sound a sleeper, the seizure will wake you up. And since you know the rough time frame, maybe can you go to bed a little earlier and wake up a little earlier in order to be "on call" for those hours.

 

[chop456]

Hi there! Welcome to CWE. My 14 year old daughter was dx with JME a few months ago (wow - actually 5 months ago!) and I can relate to how you are feeling. Although Paige has not had a T-C (but could), she does have morning myoclonics. I had her sleep with me for a week after the dx - I was so nervous that a T-C was going to happen. After starting her meds, my nerves settled a bit. I still feel like I am walking on eggshells every morning... waiting and wondering... but am breathing a bit easier now that she is on her meds. I am hopeful once your daughter is up to her therapeutic level of her meds it will get easier for you. I do like the idea of a baby monitor.

Again, welcome to CWE. I would be happy to talk to you if you ever need to talk from the "mom" perspective. Seems that if you get the JME dx, we'll have something in common!

 

[LisaBee]

Hi KimHen5! My daughter is also 11 and having seizures in her sleep. I have slept with her every night since. Im scared I wont hear her either. We dont have an "official" diagnosis yet. The doctors in my city are very much frustrating me, but thats another post. Anyway she has T-C in early morning hours 5am-9am. I dont sleep much during that time. I too stare at her and hope a seizure will spare us that morning. I dont know how this forum works, Im new. Can we chat? Add friends? If not, send me a message and maybe we can connect via Facebook since we have this in common? You too, Chop456!

 

[donnajane]

Hi My 18month old does weird and "wonderful" things at night startles/spasms/jerks, arching back stiff and making a weird cry sometimes, a couple of times he was asleep then did this super fast sideways roll and was rolling so fast he hit the side of his cot and went up the side a bit. We have an audio monitor which is good to hear if he is having ones where he does his strange scream but we also now have a secutiry camera with night vision on it which we can view on either our computer or on our mobile phones. I use to watch him a lot but now have learn't to sleep with his audio monitor and then if I hear anything which worries me I watch him using the app on my mobile phone. I use to not sleep as I was so worried re what he was doing now I think we both actually get more sleep as he often resettles himself if they wake him up and if he does make sounds which concern me I watch first before rushing down to his room. My theory is this is something he might have to live with and I don't want to develop him totally relying on me. Being a mummy I want to run down their and hug him when they happen but I know that may not always be the best answer. We have video's him several times overnight and each time are usually shocked by how much he moves and what he does. At least in his cot I know he is pretty safe.
Silat it was interesting reading what you wrote about saying you can't remember them but feel like you never really went to bed and feel the affects during the day. Atlhough Nureo hasn't yet been able to "confirm" my son is having seizures overnight and often during his day sleeps he suspects he is by the way he wakes up and the footage we have been able to show him of him of what he can be like when he wakes up. Do you sweat at all when you sleep when you have them? My son sometimes is soaked in sweat and so is his bed but it is mainly after his afternoon nap and when he is like this he can is so unsteady on his feet when he wakes up and the Nureo said its like he's in a fog.
I learn so much from everyone sharing their experiences. Thankyou all so much.

 

[KimHen5]

Thanks for your input donnajane! I've sort of hit that conclusion as well. Our neurologist told me they don't want me sleeping on her floor because it can develop many bad habits. So I sleep in my own bed now but since I usually get up way before she does I do find myself standing in her doorway watching her as I drink my coffee. I was told also by the neurologist that we will come to identify when she has had a seizure by her next-day behavior. I totally get that now. She is extra sleepy & very grumpy afterward.

My only concern at this point is that I want to know when she has a seizure because we are still trying to find her ideal keppra dosage & if I'm not in there to actually witness a seizure I'm not 100% sure she's not had one. So I'm seriously considering a video monitor so I can watch if I hear any suspicious sounds. Our neurologist is very confident that Keppra will do the trick on controlling her seizures completely, so I'm hoping he is right!

 

[donnajane]

We decided to turn on the motion detect on our night vision camera to record what my 18month old was doing. It misses the inital start of the event but I could not believe how many small events/spasms etc he did. I stopped watching it was so many. if he was sleeping face down his head arches back and at least one arm goes straight and shakes he then appears to move/roll over really stiff, I think it might actually be him rolling over due to what ever is happening and being stiff/spasm. I think the camera went off 125 times between 7pm and 4am and way to many of them were like this others were just what I would call usual sleep movement. They may not even be a form of seziure but it explains why he wakes up often tired. I went and stayed in his room from 4.30am as he was to ditressed, after watching his video I now know why. I gave him a bottle and he was able to sleep cuddled up on me for another hr or so, still had the same strange things happen which made it a bit hard to hold him sometimes but in my mind he settled easier with me there. Probably creating bad habits with him but sometimes a mum just has to give cuddles.

 

[Nakamova]

donnajane -- have you shown the video to his doctors? It may help them decide to move forward on treatment or change his existing treatment in some way. I think you did the right thing in cuddling with him -- I'm sure he felt more secure in your arms, even if the spasms continued.

 

[KimHen5]

poor little guy : (

I totally agree that was the right thing to do. If its scary for us imagine how he feels.

 

[donnajane]

The Nureo and Paed have seen a couple of examples. Nureo said he really can't say what it is. Paed thinks they look like very small seizures. Both have agreed to look into it more once the results form his LP, MRI and blood tests come in. Feels like forever waiting. The footage from 2 nights ago though is more "confronting" than anyting in the past so will show them when we see them on Aug 16th.
Thankfully last night he seemed to have a better night, don't think I will watch any footage from last night as the previous night had so many examples for his Dr's. Don't want to spend my time analysing my little man and not enjoying him.
Thanks again.
Donnajane