Tuesday, July 1, 2008

Mr. Sandman, Bring Me A Dream



In March, 2007, I wrote a post titled A Three Toothbrush Night. In that post, I explained how my nights, and the amount of sleep I get, are measured by the number of battery powered toothbrushes Ashley has. As I explained in that March post, Ashley uses the toothbrushes for sensory input - input that helps her relax. Unfortunately many nights she has a hard time relaxing, even with the toothbrushes.

Since I adopted Ashley eleven and a half years ago, I haven't slept through an entire night. Many times that was due to worrying about her health and well-being or dealing with seizures, tube feedings, or other significant medical problems. But, even during nights when I am not awake with worry, I am awake because Ashley just doesn't sleep well. I've never known for sure if those poor sleep habits are due to her deafblindness or perhaps small, almost undetectable seizures, or something I just haven't figured out yet, but I do know that the lack of sleep is really taking its toll on me.

I have a very high-stress job - I am a single parent caring for four children, three of whom have disabilities - and I have fairly significant health problems myself. All those things mean that I REALLY need my sleep. I just don't know how to get it.

I've tried, with doctor supervision, giving Ashley Melatonin. It didn't help. She is currently on Clonidine, which helps her get to sleep but not stay asleep. Benedryl helps some, but like the Clonidine, does not last through the night, and can have other negative effects such as causing ear infections. She doesn't take naps, and I try to keep her busy and active during the day so she will be tired at night. And she is tired and goes to sleep easily at bedtime - but will only stay asleep for four or five hours.

Does anyone have any suggestions for me? Have you had similar problems and solved them? I'm desperately in need of a date with the sandman...

9 comments:

mommy~dearest said...

Hmmm...it would definately help if you knew why Ashley keeps waking. Have you tried a weighted blanket? I want to get one for Jaysen- I think it would provide a sense of security- kind of like a "hug" back to sleep.

Sarah Heacox said...

I'm not a parent, but I used to work at a sleepaway camp for people with disabilities, so I have observed what many different carers and parents do to help their folks sleep. Many use drugs to regulate alertness and sleepiness. Often seizure drugs can interfere with one's natural circadian rhythms, and changing medications times sometimes helps. Some non-drug strategies I have seen are:

-Sleepytime Tea (from Celestial Seasonings)
-Valerian root, hops, and 5-HTP (these are all dietary supplements, like melatonin is)
-weighted blankets or sleeping under big heavy stuffed toys (for some people these are very sensory-comforting)
-using incentives for staying quiet in bed throughout the night
-People with sleep apnea sleep better with a cpap or bipap machine on. untreated sleep apnea can also cause seizures in people with controlled seizure disorder.

I had a genius professor at school, William Dement, who wrote a book called "the promise of sleep," which i would highly recommend to you. He is a big proponent of 'sleep hygiene,' which is basically taking care of every little detail of everything that will promote sleep. It includes lots of things most people don't think about.

I'm sorry your family is struggling with little sleep. Do you have any access to overnight respite care, like through arc, ucp, or easter seals? Good luck, and I hope everyone gets some more well-deserved ZZZs.

Esbee said...

I might try one of these and just plug it into the wall instead of an alarm clock (it's normally used to wake up a deaf person).

I'm sorry you're (understandably) feeling worn out. :(

terena said...

I know exactly how you feel. My daughter is only now beginning to sleep all night and she's 13. She is also deaf blind, as well as ataxic. For her, the dizzy spells get worse at night, so that wakes her up. One summer it got so bad she hardly slept at all, so neither did I. Her neurologist put her on a low dose of valium. It didn't help her sleep, but she was happy.

I too tried everything, and the only thing that seems to work is time. Ashlee may develop better sleep patterns as she grows. My daughter is doing much better now that she's hit puberty. I know that doesn't help you today, so the only thing I could do was get away now and then to grab some sleep. Get nursing respite twice a week at night so you can grab a few nights of sleep. I know it's hard to find, but you have GOT to get some rest. I run away from home occasionally and sleep at a friend's house. I have another friend whose daughter needs turing several days a night, so they have a nurse come three nights a week. It saved her sanity.

You may not be able to fix Ashlee's sleep pattern, but you can find ways to help yourself get rest.

Marla said...

We live similar lives. It has only been in the last year that m has slept through the night. She is ten. She is also on Melatonin (better luck with Sustained Release type at 6mg), she also takes Clonidine for sleep. Even on this there are many nights were she just can not sleep.

Ever since she was a toddler she would say, "I can't bose my eyes Momma!" She too gets very frustrated by it.

Lucky for me, I don't work and I can nap during the day some when she is home.

We have tried weighted blanket with little help. When we visited The Cleveland Clinic we were told that it is common for children, like M with chromosome disorders and Autism, etc. to have very different sleep cycles. They had empathy but had no better ideas than what we had all ready tried.

For me it has come down to altering my own schedule and life so that I am not so tired and can better deal with her erratic sleep schedule. Easier said than done, I know.

Over time, it has improved with M. But, I see a long future of her being up in the middle of the night full of energy. It does not help that M has no sense of what time of the day it is and often insists it does not matter.

I so feel for you. I saw someone mention Valerian Root. you have ot be careful with that too because it can cause bed wetting or frequent urination.

Hugs.

Penny L. Richards said...

Jake's never slept well--we get a very occasional five or six straight hours, but most of the time he's up several times in the night, sometimes for hours, and we tag-team if it gets too bad (I recognize that's not an option for a single parent).

We put a small fridge on the nightstand, so if he's only waking to drink, we can help without really rousing ourselves much. We keep a musical keyboard in the bedroom (for some reason, Jake grooves to keyboards--not sure how our neighbors feel about that, though). Warm baths are sometimes a help. Jake also likes vibration--we find that diffusing the vibration of a small toy through a pillow or couch cushion really calms him nicely. He also calms to spinning, and when all else fails, we put him in a swivel recliner and "spin him out." When he was younger, we also did post-bath massages with a little warm oil, hoping to calm his muscles out.

We've never tried any meds, really--he has enough health issues that we'd be reluctant to mess with too much there. But we're pretty vigilant about stuff like constipation that can add to overall discomfort.

I just don't know if Jake's set up for the usual rhythms of sleeping and waking. It's possible he's sleeping as much as he needs to, and we've just got to work around that. Doesn't make the cumulative sleeplessness any easier on a parent, though, eh? You're not alone, anyway!

Jane said...

Have you ever tried the brushing that OT's do for sensory integration? There is a soft plastic brush and a certain technique you learn from an OT. Parker loved it and along with joint compression it really made a difference in his sleep. That along with letting him sleep on the floor of our room but doesn't seem to be an issue with Ashley. http://www.slc.sevier.org/sibrush.htm

Ashley's Mom said...

You guys are great! I really appreciate all the suggestions.

Mommy~dearest, Sarah and Marla, I have used a weighted vest with Ashley in the past, during the time we were working on feeding issues with her. It helped a lot then, so I will give the weighted blanket a try for bedtime.

Sarah, the book you mentioned sounds great. I am going to check my library today and see if they have a copy.

Esbee, the bed vibrator seems brilliant! I would love for it to take the place of the vibrating toothbrushes. Come payday, I am going to order one and give it a try. Thanks for the link!

Marla and Penny, I think I am close to being where you are - just accepting that Ashley's sleep patterns are set and I will need to adjust. Nursing respite, like Terena suggested, would be wonderful, but unfortunately, that is not covered under Ashley's insurance and private pay is not an option at the moment.

And Jane, the brushing helped with the feeding issues also. I think I will give it a try again along with the weighted blanket to see if addressing the sleep problems in a sensory way will help.

Thanks again, guys, for all the great suggestions. This is way I love blogging so much!

Deborah

terena said...

Yep, that's one of the reasons I blog too. And I could SO USE SOME ADVICE right now!