How do you cope with NO sleep?

[greenmamato2]

My daughter (age 11) has Autism, epilepsy, developmental delays, and was recently diagnosed with cerebral palsy.  She never sleeps.  Well... maybe 1 night out of 5 she'll sleep.  The others she is up screaming all night long.  We have to lock her room because she doesn't understand danger and will try to escape the house, or play with things that could hurt her (knives, stove, etc).  She also has a tendency to eat uncontrollably so we have to keep her locked in her room at night for that as well (though we also have locks on the fridge and pantry). 

It's 6am and I am SO exhaused and just wanting to cry.  I haven't slept all night because she has been up screaming and crying the entire time.  She has everything she could need.  She has a dry diaper, she has a comfortable temprature in her room, clean clothes on, a comfy bed, she had all of her meds (including 3 meds to help her sleep), has something to drink, and she has food in her tummy (just toast this late but you can't go 8 hours of being awake and not eat something, even if it is past bedtime).  We have tried the TV on, the TV off, etc.  Nothing is working. NOTHING. 

This has been our lives for the last 11 years.  No doctors have any solutions for us.  None.  We've tried melatonin, abilify, hydroxyzine, and other meds.  We have tried the "Relax" type drinks that have rose hips and valerian root in them.  We have her on a very consistent and comforting bedtime routine every night, which includes deep pressure and massage.  We've tried aromatherapy with lavender.  NOTHING works.

I am SO tired.  I'm 36+ weeks pregnant and I can't be doing this.  I can't stay up all night.  Hubby is snoring peacefully (he can sleep through anything) since he has to get up for work in the morning.  It does frustrate me that he just shuts it out and sleeps, while I try to figure out ANYTHING to get her to rest so that *I* can sleep.  He helps sometimes, but apparently tonight is not one of those times, and I am just at my limit of what I can do right now.

I have to try to do some work tomorrow (today), though I don't know how I am going to be able to function. I have to take care of both my 11yo and my 6yo because they're on fall break, and we don't have anyone that can help us with them right now.  I can barely keep my head up and my eyes open but every time I try to go to sleep she screams bloody murder, so it is just not worth it to even try.

Those of you with kids who have sleeping issues, how do you cope????

[Eyelet]

I couldn't read and not respond.. My son is 15 and has autism/developmentally delayed. He takes Clonidine at night to help him sleep and knock on wood it works pretty well for him. Prior to Clonidine, he would be awake and bouncing off the walls all night.. my husband and I would take shifts to stay up with him. 

What is she doing while awake in her room? I don't know if it's feasible, but maybe someone could lay down with her in her room?? Is she verbal? 

Many hugs to you.

[VisionaryMom]

In short, I couldn't cope. I ended up hospitalized, and it took me a long time to recover. It is the only time that I have seriously wanted to leave DH - because he also refused to help at all. Your husband needing to work is an excuse. He needs to step up for YOUR health.

[DanishMom]

Oh, mama. That's beyond awful. I've heard good things about clonidine. Your husband needs to step up. Pregnancy and extreme sleep deprivation can be dangerous. Hugs to you.

[greenmamato2]

Thank you everyone.  She started Clonadine in August and it did help for a short while.  She has a crazy metabolism and her body adjusts to medication really quickly.  Her current medications are:  Depakote, Topamax, Clonadine, Hydroxyzine, Abilify, and Melatonin at night.  In the morning she takes Clonadine, Depakote, and Topamax.  The Depakote and Topamax are for the seizures.  The rest are for behavior/sleep. 

I wish so much I could figure out how to help her rest, to wind down.

Hubby does help about 30-50% of the time.  This week for some reason he's been "on my list" (as my grandma would say) because he's been acting pretty selfishly.  I don't know if it is a pre-baby thing or what.  Normally he's not like that so much.  We usually alternate who wakes up to check on her, and this morning at like 1:30 he was just done and said he was not going to do it anymore (I'm hoping just for the night).  I know he was frustrated because nothing was helping, but it left me to be the one who didn't get a wink of sleep, which is absolutely not ok/fair.  I don't mind doing my part, but I do need some help, especially right now.

When she gets tired the whole rest of the day is shot, because she won't nap - she just gets cranky.  With her that looks like more meltdowns, aggression, etc.  We went through a really scary time over the summer where we weren't sure she could stay with us any longer.  That wasn't even my choice as her care team was talking about having her removed by CPS for *our* safety because she was so aggressive.  I fought them on it and quit my job to stay home with her and try to find some answers.  Over about 2-3 months and with the help of a really strong sensory diet and increased medication, she became more "herself" again, started sleeping a bit more, etc. 

I was able to find a job that I could work around her school schedule and that is flexible, helping families like mine find local resources.  I'm glad to be back to work again, but if I can't sleep at all, then how can I do my job, much less care for my family!?

We're cycling back around to not sleeping now and and I am really nervous, especially with the baby coming any day now.  I don't want to ever get back to where we were over the summer.  Sleep deprivation definitely doesn't help.

[Eyelet]

Your daughter sounds a lot like my son.. high metabolism, severe aggression issues, food obsessions, insomnia.. It took a lot of tweaking to get his nighttime medication doses right. He started off on half a 0.1 mg tablet of Clonidine, which worked ok at first but quickly wore off after a short time. He's now up to 5 0.1 mg tablets (0.5 mg total), along with 3 mg Risperdal, taken 1 hour before bedtime for it to be effective. These aren't even the maximun doses - we can adjust this if needed. We wait to give him his nighttime meds until 9:30 -10:00 pm, so it's more effective keeping him asleep all night. His current medications are Risperdal, Klonopin, and Clonidine. If he wakes up at night (which he does on rare occasions), I give him an extra dose of Klonopin.

I feel you you, finding the right medication balance is an unending process, it seems.

[crunchy_mommy]

Oh wow... huge hugs. I can't imagine. Well, I can, but not 11 years of that.

Maybe this is a dumb question (I'd imagine you've tried just about everything by this point!) but have you tried a gluten-free diet for her? It has a huge effect on DS's sleep, though not immediate -- he needed a couple weeks off gluten to start to see a real difference, and the times we've tried letting him eat it again he was fine until a few weeks later when it started building up in his system. A diet that includes gluten also seems to be a bit connected to excessive eating for us.

I'm guessing a night nurse/home care aid isn't in your budget... but that's one thing I would consider.

My other thought is for you & DH to stagger your sleep schedules. Maybe he sleeps from 7pm-2am and you sleep from 2am-9am. Or even if there is some overlap in the middle of the night, figure out some way to ensure each of you gets several hours of uninterrupted sleep.

[VisionaryMom]

Originally Posted by crunchy_mommy 
My other thought is for you & DH to stagger your sleep schedules. Maybe he sleeps from 7pm-2am and you sleep from 2am-9am. Or even if there is some overlap in the middle of the night, figure out some way to ensure each of you gets several hours of uninterrupted sleep.

We tried that for a while after my hospital stint. We also tried just alternating nights. Part of our problem was that my DH doesn't wake up easily (not that he was putting in much effort). What we did for a couple of years was that I would go to bed once a week when he came home from work, and I would sleep a "shift" during the day at least once a weekend. That gave me a full period of sleep, and I really adjusted to staying up at night. It was hard to transition back to a "normal" sleep/wake schedule once DS got past this point, but it did help during that time.

[melissa17s]

Oh Greenmamato2 what a difficult situation.  If you can search out respite care, in which you get someone to periodically come in and care for your dd, so you can sleep.  Ask your doctors or team what is offered in your area.  

My ds has epilepsy, but does not have the sleep issues that you are enduring.  I would be concerned about the aeds your dd is taking.  Ds had behavioral problems on valporic acid (depakote/depakene).  If a child has issues with aggression, than this med can intensify it.  It is also likely the source of the hunger.  My ds ate nonstop on it; had to keep food with him at school to peck at.  It wrecked his love of healthy foods, which even after 2 years of being off it we are still trying to bring back.  He had stomach aches from it, too, which is a common side effect.  Topamax is sometimes prescribed to counteract the weight gain associated with depakote and control seizures that are not being controlled by depakote.  I have read some have a difficult time with either sleepiness or sleeplessness on topamax.  If your neurologist/epitologist is unaware of the situation- contact them immediately. This is taken from http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000677/ regarding valporic acid, topamax and all aeds, "You, your family, or your caregiver should call your doctor right away if you experience any of the following symptoms: panic attacks; agitation or restlessness; new or worsening irritability, anxiety, or depression; acting on dangerous impulses; difficulty falling or staying asleep; aggressive, angry, or violent behavior; mania (frenzied, abnormally excited mood); talking or thinking about wanting to hurt yourself or end your life; withdrawing from friends and family; preoccupation with death and dying; giving away prized possessions; or any other unusual changes in behavior or mood. Be sure that your family or caregiver knows which symptoms may be serious so they can call the doctor if you are unable to seek treatment on your own."  This is the page for topamax http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000998/ .  

http://professionals.epilepsy.com/page/sleep_insomnia.html This article would make me want a blood level to make sure that the valporic acid is at a normal level and not adversely effecting her liver, which can cause insomnia.  A sleep study besides an eeg would also be be worth while.  

I hope you all get some rest 

[anj_rn]

Yeah, we had this problem for a while (although my daughter was young and just up, not violent).  It turns out she has an atypical response to valium - it wires he like a hit of cocaine, instead of making her sleep.  Our pedi neuro put her in the hospital for a few days to monitor her seizures and switch her seizure medications.  I stayed at the hospital (because I needed to pump to feed her fresh milk), but we could have taken turns (which is what we do now), or even left her at night.

Life was so much better when we got the seizure meds right.  Our epileptologist said that a lot of docs like to just add on meds, but that they best practice (in his opinio) was to put DD in the hospital, and wean her off the meds with side effects, and ramp up something new.

[greenmamato2]

Sorry I'm late coming back to this. Things have been hectic, and we had another night of no sleep last night. 

When she was hospitalized, her Dr's actually put her on Depakote and upped her Topamax *because* of the behaviors at the beginning of last summer, thinking that the behavior was her communicating that something was wrong / she didn't feel good.  It did help quite a bit.  She's also had this hunger issue long before Depakote, mostly I suspect due to Abilify, which also has that as a side effect.  She's been on Topamax for years, and was on Depakote when she was younger (we took her off once her seizures started to decline several years ago, but they have increased again - she has the severe version of Doose Syndrome). Her Dr's do know about the sleeping and eating issues - both of which have been around since she was a toddler. :(

[pattimomma]

Greenmamato2 I have no advice. I just wanted to offer
 

[Treasuremapper]

I think the level of sleep deprivation you are experiencing is not sustainable. It's a basic human need. My husband sleeps through anything too, so here is my solution -- he sleeps on a tent cot (a small cot with a zippered tent, cost around 90 bucks five years ago) in my daughter's bedroom half the time that she can't sleep. The tent provides privacy for both of them and removes the excuse that he can't hear anything going on. That's an option if your husband really is sleeping through it, which I highly doubt. This pretty much takes the wind out of that argument, if he is in the room. My other, more realistic, idea is that you seek out one of the Medicaid programs in your state and sign your daughter up for some respite care or night nurse. I know that in some states there are Medicaid waiver programs specifically designed to keep children out of institutions. Off the top of my head, your daughter might qualify for some sort of Medicaid waiver program like the medically dependent child program or some similar program. These programs can provide respite care, and all kinds of services that are not income dependent. How to find this? Well, google around for the health and human services and disability agencies in your state. You can start by just putting in "medicaid waiver program" and the name of your state. You might be able to find services by googling terms that are now out of use, such as "MR" or "MHMR". Look for your protection and advocacy agency in your state, too. http://www.napas.org/ Call them and ask them who you should call to find out about services and support for your child and about local medicaid waiver programs. Finally, rule out the possibility that there is some sort of underlying physical pain that is keeping her awake. I know you probably did already, but you might want to check it out. Good luck. You deserve some support, whether through a state funded service or through your husband stepping up to the plate.

[mopdop2000]

Yes, I agree with Treasuremapper. I know people whose kiddos don't sleep, and they have a CNA in at night to take care of them, so the momma can sleep and have a better attitude in the day :) This is something you should look into.

[beachcomber]

Has anyone suggested Gabapentin to you? My DD has had sleep disorder for years and we finaly figured out it's due to a combination of Autism, severe separation anxiety and Restless Leg (limb) Syndrome. The Gabapentin helps wiht the neurological pain she gets from teh RLS and so she cna stay asleep instead of twitching and waking. She takes a combination of liquid iron, slow-release melatonin, certraline (for the anxiety) and a low dose of Gabapentin. Given the epilepsy, it is one of the regularly prescribed meds for that, so it's not a stretch to consider.