Sleep--We all need it!

[mpalmer118]

Hi everyone,

I thought that since the question of sleep as has been popping up alot recently, it might be nice to share some of the ways we handled our kids sleep issues. Rachel goes to bed between 7-8pm. She is allowed to stay up until 8pm, but is usually to tired due to her seizures. When (which is almost every night) she wakes up in the middle of the night she will be up for several hours. She will lay quietly, but not sleep.

Unfortunately, I have not found any sure fire solution, and we have tried everything except medication. Prior to her being on Lamictal, we had some success using white noise machines. Now she is off Lamictal and on Keppra and Gabitril, but we are still having sleep issues.

whose next?

[J&K Mom]

Jake has NEVER slept. EVER. We tried everything, including all the meds. We went thru melatonin, benedryl, chloral hydrate, clonapin, risperdol, had a couple years luck with clonadine, and have now had good success with Trazodone.

Without meds, his pattern is go to bed around 11 pm. Wake up at 2am, up for the day until 11pm again. It was pure h*ll!


With Katie..... the first couple months were a dream. She slept all night. (No a newborn shouldn't sleep all night!!) Then she was up every couple hours like she should be. We found success with swaddling for a while, until she got too big and hated it. Then she moved to the pattern of down at 9pm, up somewhere between 11 and 1, nursed, and then was up every 10 to 20 minutes.

Until I took her off the breast! Now on a good night, she's down at 8:30, up between 1 and 3 long enough to drink a bottle and then we put her in the car seat and cut tv on until she falls back to sleep and she will stay down until around 6.

Now, on a bad night she's down at 8:30, up at 11 and up and down every couple hours. It's about 50/50 right now with good/bad nights. I am willing to deal with this for a while.

[lmb3]

Due to my DS's mito dysfunction, he sleeps a lot and needs it. He is in bed at 7 p.m. and sleeps until I wake him at 6 a.m. On the weekends I send him to his room for 1 hour of quiet time, just so he can get some rest, but let him know that he doesn't have to nap (he is 7). Most of the time he naps anyway. When he gets home from school, he has to rest on the couch for at least 1/2 hour.

My DD is whole other story. She never sleeps, even when I was pregnant with her she kept me up at all hours. She will go to sleep between 10-11 p.m, wake up in the middle of the night to play quietly in her brother's room for a few hours and then falls asleep on his floor or in his bed and wakes again at 6:00 a.m. We used to keep taking her to bed when she would wake up in the middle of the night, but it was just no use. We have come to the conclusion that she just won't sleep all night. We keep a gate at the top of the stairs for DS's sake anyway and we have alarms on all the doors in the house so we don't worry so much anymore. We just let her know that when she wakes up in the middle of the night she is to stay in her room or her brother's room. She's okay with that. Since going GF she is starting to sleep better and not waking up at night as much. When she does though, she has been going back to her bed when she is done playing. :-)

[Heather]

Aidan sleeps a normal pattern from approx 8 pm until 6 or 7 am. The trouble is, he has restless spells and needs to reposition himself, like everyone and he can't. If he's alone he will get roused into a full fit of discomfort and crying, with air swallowing, gagging and ultimately vommiting and the risk of aspiration. Rather than spending half the night on my feet anymore, I started keeping him in our bed about 18 months ago. Prior to that I was a totall insomniac myself. Now, I can almost reposition him in my sleep and he barely stirs. I know this can't go on forever. Until I can, at least, get him a Sleep Safe bed, which he can't get his limbs stuck in, I'm not even going to try and separate him. I wish he could sleep in a gravity free, floating nest. Lately, because his botox has worn off, he's extremely tight and sore from scissoring/spasming, in the morning. It's making him more restless, starting @ 4 am and becoming more difficult to reposition him. I fear it's time for another round of Botox torture.
Ariana is quite a good sleeper. That's one huge blessing to count. I do give her melatonin and benadryl pretty often, before bed. We are aboutto give clonadine a trial, for her. The idea is to try and calm her excitability, impulsivity and agressive behaviors throughout the day. Ritalin backfired. We're starting with a tiny dose at night, because of sedation.

[langansmom]

The only time Langan was a good sleeper was when she was dosed on phenobarb as an infant. Since then, it is a constant battle. She's on a low dose of lamictal and still has trouble. She was on melatonin for a long time and we weaned her a while back and actually have some pretty good sleep nights with her. And her moods and learning were soooo much better with a good night's sleep. But her problem now is that after a seizure she is just UP. Sigh. She had a seizure at 11:30 last night and went back to sleep at 4:30 this morning. You can imagine how pleased she was to get up for school.... I almost just let her sleep in, but her therapists were already at school when I called so I took her in. She was smiling and walking around when I left, but I know there will be a melt down. Any ideas on what to do to get her to sleep AFTER a seizure. Seems like it should knock her out but it does the opposite. Keeps her wide awake and breaks my heart all in one nasty package. Ugh.

[Denae]

Ri gets melatonin nightly.

For a long time she was sleeping great. But since her seizures became so frequesnt she has a harder time getting to sleep so we started the Melatonin several months ago. We started out with 1mg, but have worked up to 3 now.

Most of the time she is asleep within about 30 minutes, other times she is up as though she had just taken a piece of candy.

[lacyndarella]

Well, I'm fairly new to this. Jimmie was just starting to sleep through the night when we started the ACTH. That pretty much killed that. On good nights he will only wake once at around 3 am. On those nights a warm bottle and a good long cuddle with mommie in my bed puts him back to sleep within an hour...on bad nights, well you've read my rants! Thankfully there are more good nights than bad ones...but the bad ones really suck! And for some reason they always seem to coincide with my dh's work schedule, so I'm always here alone to endure it! I don't think it's bad enough to elicite any kind of sleep aid and hopefully when the ACTH goes away, so will the sleep problem...there is always hope.

Lacy

[lorilou]

Our "magic" combination seems to be 3 mg of Melatonin and 0.025 mg of Klonopin.

I really hate to drug him for sleep but we've learned that if Noah doesn't get enough sleep we see increased seizure activity. We figured this out after two summers of ZERO seizures followed by multiple seizures in September.

Noah is a natural night owl...he prefers to go to bed around 10-11 pm and sleep until 9-10 am. That doesn't work with school obviously.

[PaulaScott]

We seem to have cycles where Em sleeps really well for several weeks (usually when she is feeling well and has a regular routine), then has several weeks of not sleeping. She goes to bed and is usually asleep within 20 minutes (with help from Melatonin) , but will wake anywhere from one to several times during the night and be up for at least an hour or more each time. Then she can be up for the day about 4 or so.

It's worse on weekends because we don't keep her as busy as the one-on-one she gets at school. During the week, not so bad.

[jenna]

OK, no hate mails !!!

Jake usually falls asleep by 8PM, and wakes up around 7AM. :D :p :D


The only execption is when he is sick like he is now, he always spikes high fever between 12-3am, so then we are up during those hours.