Sunday, December 20, 2009

A Nighttime Admission

I wrote an entry a long time ago about kids and their sleeping issues. I have pretty much chalked up E's waking up and crying/screaming issues to bad parenting...we must be reinforcing some bad behavior, but we don't know what it is, and we haven't figured out how to stop it. In short...E rarely has a "good night". By rarely I mean...once every two weeks? Maybe?

We try to "switch it up" when we can, and that's only after some big change of events. Like, if we have to spend the night in a strange place, then when we come home, instead of going into E's room if she screams, we'll approach her door and say "we will come in when you speak to us in a nice voice". Recently, E was sick for a whole week with strep throat. So, screaming only made her condition more painful, which made it even more to cry about. So we held her on the couch. We cuddled with her when we could. I mean, E was miserable, she was sick, she was throwing up, she was feverish...she needed to be coddled and loved, so a parent was with her or on a neighboring couch all night. We started gradually weaning her to her bed, as she got better. And so here we are. Again. Same issues.

What issues? I HAVE NO IDEA. She goes to sleep fine. She just wakes up every night. Sometimes she's not fully awake and crying loudly...I come in and whisper "Elena, what is happening?", you know, in case she says she's being eaten by a dinosaur or something. Last night I got a "I can't stop". (this is a big deal, normally I don't get any words) "You just can't stop what?" "I just can't stop being bad" [SCREAM]! Here we go again.

So...here is my confession. I've been harboring some harsh judgement for some parents who "medicate their kids" to make their lives easier at night. Like, they don't even give their kids a chance to behave before they've already shoved a pill in their mouth. I'm pretty opinionated about that. And to be frank, I know some parents who now medicate their kids, who felt just like I do about it. Well, when E was sick, she had some codeine-laced concoction for pain and to help her sleep. I remember from SDR, she doesn't do well with codeine, it seems to make her nauseous. It did make her sick, but only a little, and after that she slept pretty well. I didn't want to do that again, but I considered using Benedryl, which is what some of the "medicating parents" give their children. I insisted it wasn't for my convenience, but for E's, who has had 5 very sick nights and needed rest to get better.

The night was just about perfect. I admit it. She got up once, I pressed the blanket to her, and she went back to sleep.

The next night I thought maybe the memory of a good night's sleep (she acknowledged she felt great the next morning) and a fun tiring day would be enough for another good night. WRONG. And so here I am writing this post.

So here I am. I feel like a failure when it comes to nighttime parenting with E. Jason and I share this frustration. We tend to tow the "hard line", meaning we show E we are not going to put up with screaming behavior and remove her from her comforts. We don't spank, we don't yell, but we use silence as a reinforcer and explain things in nice voices when she is ready to listen--which she does, and she does acknowledge she has been behaving badly. I think she gets the idea of punishment (in this case, she doesn't get to return to her nice warm bed after a meltdown), but she sees it coming and then gets upset b/c she knows what will happen. She understands choices, and knows the choices are hers. And yet this happens just about every night.

What I am learning is this is a huge stress for my husband and I. That one night when Elena isn't a nighttime problem, was as if the Heavens opened up and music started playing from the parting clouds ("aaaah!"), SERIOUSLY. If we could fix this, our relationship would improve so much. So here I am.

I'm going to try one week of Benedryl. I'll write a post about it and my thoughts once it's over. I feel defeated...but maybe one week is all I need? To get E in a good pattern? It is worth it to me.

11 comments:

Holly said...

Here's some thoughts for you....

I read the book No cry sleep solution for toddlers and preschoolers http://www.pantley.com/elizabeth/ and it helped us tons.... She talks about everything down to the type of night light you use.

You might try a weighted blanket. Kids with spastic muscles tend to wake more to reposition. Once they are up...they are UP. So maybe that would help.

I'm giving this advice but Caleigh still doesn't sleep through the night. These things have helped the wakens, but it isn't perfect. She isn't able to reposition herself so we tend to do it for her throughout the night.

Hope this helps. I feel your pain.....

Amy said...

Hi Holly,
Thanks for your post! You know, I thought about a weighted blanket just last week. I will be pursuing this.
I'll also check out the book link.
Amy

GingerB said...

My CP infant (16 months) doesn't sleep through the night yet but I've never known if it was the hunger and her small size or something else. the weighted blanket idea gives me something to think about - I'll be checking back to see your progress.

Best of luck with the Doodle - my heart goes out to you. What about melatonin or something homeopathic? That said, I've certainly used Benadryl on myself.

Chelle said...

Hi Amy I am in the same boat with you but the benadryl has worked for us and when my Hannah is over what ever it is that keeps waking her up we go off it and we will do ok until the next time this last time I waited 4 weeks before starting benedryl again I tried to figure it out and then I really was sleeped deprived like when she was a baby. Some people say that kids with cp have jerking in their legs that can wake then up but I don't know it seems to be when something has set my Hannah off her schedule we go thru it all over again.. I hope you get a good night sleep soon for ALL your sakes..
Rochelle

Belinda said...

I wish I had some words of wonder and support for you but we have struggled with my daughter Georgina's sleeping for so long. She goes to sleep fine but sleep walks and cries in her sleep and almost every night we are woken to her trying to get in with us. We questioned her cp Doctor about night terrors and cp but he thinks it's just a faze (a long one at that) and that maybe she has legs cramps that wake her?? I think that could be it not sure but it sets her off for a bad night sleep either way. Poor Elena I think you should just go with what you and your hubby think is best for her and you and just know that you are obviously good parents, this blog would not exist otherwise. Take care
Belinda Richardson

Anonymous said...

talk to your doc about this...they may be able to help. melatonin may help reset her sleep-wake cycle. less side effects than benadryl. also, is she having any pain/muscle spasms at night? if so, small dose of valium.

chelsea said...

Hi - it's my first time writing a comment since I started reading your blog months ago but this topic is the one I'm most passionate about. I could have written that anguished post myself. Knowing that from one parent of a cp kid to another it can make little to no difference I'm just going to go ahead and share what we've been through. Oliver is now 16 months. I've read every single sleep book (seriously) and they don't seem to fit. We've tried many methods for a long enough time period (weeks) to know if they are working or not. We currently have our child medicated with valium and I still don't think it "works". If you press me then I'll say that maybe it's better. I hate medicating him and it not even having the affect that I hoped for. He'll wake up to 5 times in a night but his main waking time is for milk and he'll be up for usually an hour. He doesn't sleep more than 8 hours total some nights and sometimes no more than 3 or 4 at a time. He even frequently wakes within an hour of being put down. And don't get me started on naps. Wrapping him tightly in a blanket, side lying to contain his arms in case that might help, noise machine, etc etc etc. We're scheduled for a sleep study at UVa next month because I feel like it's the last thing I know to try. I haven't tried benadryl yet but did do melatonin and looked into tryptophan. I keep telling myself that when I'm out of ideas I'm just going to come to terms with this as who he is. I'll comment again if anything changes after the sleep study but this is such a common problem isn't it. I wish you the best of luck with your version of it.

Amy said...

Hi Chelsea...you know I live in Charlottesville, right? We should talk while you are around for the sleep study. I also work at UVA hospital. Email me at cpmom2009 AT yahoo DOT com

Erin said...

Amy, please don't think that nighttime problems are a reflection of your parenting or Elena's behavior. You guys are doing a great job. Also, you can't really expect E to act rationally (i.e., behave) in the middle of the night - adults aren't even rational in the middle of the night (I could tell you some stories!).

I second the recommendation for The No Cry Sleep Solution - it was helpful to me and has terrific reviews.

The weighted blanket idea sounds like a good trick to try, too. Earlier this week we switched to a lighter comforter while our regular one was being cleaned. We noticed we did not sleep as well - the weight really does make a difference.

Does it make any difference when various factors are changed? Does she sleep better in the summer? Does she sleep better when she goes to bed earlier or later? Does she sleep better when sharing a room? I wonder if her sleep issues stem from a physical thing (overly tired, not tired enough), a stress thing (e.g., sleeping alone, school, busy schedule), night terrors, etc. No Cry Sleep Solution could help identify what the issues might be and help you work toward resolving them.

Good luck! If you want a good night sleep once in a while, A would love to have E over for a sleepever. Just let us know when a good night would be. :-)

Anonymous said...

HI AMY I FELT I NEEDED TO COMMENT.. FIRST OF ALL YOU ARE AN AWESOME PARENT OTHERWISE THIS SITE WOULD NOT BE HERE.... SECOND I MENTION YOUR ISSUES TO A FRIEND OF MINE THAT DEALS WITH SPECIAL NEEDS KIDS, AND SHE SUGGESTED TO TALK TO YOUR DOCTOR LIKE MANY HAVE SAID ABOUT MELITONE... ALOT OF TIMES KIDS WITH CP DON'T PRODUCE OF ENOUGH MELITOME THAT IS THE SLEEP CHEMICAL IN YOUR BODY THAT MAKES YOU SLEEPY AT NIGHT..

ALSO HAVE YOU YOURSELF EVER NOTICED THAT IF YOU TRY TO SLEEP WITH THE LIGHT ON OR THE TV THAT YOI DON'T RELAX AS WELL? THATS BECAUSE YOUR BODY STILL THINKS ITS DAYTIME AND WHEN YOU TURN OFF THE LIGHTS THATS THE SIGNAL THAT TELLS YOUR BODY ITS TIME TO SLEEP

I TOO HAVE CP, AND I AM ALWAYS TIRED.. I COULD FELL ASLEEP ON THE COUCH AT NIGHT THEN I AM AWAKE FOR AN HOUR OR IF I DON'T NAP DURING THE DAY I AM TIRED AT BEDTIME BUT I DO WAKE UP AT NIGHTTIME SOMETIMES FOR AN HOUR OR TWO, BUT IF MY LEGS ARE HURTING ME SOMETIMES IT WILL WAKE MW

Brooke said...

Amy, I have 6 year old twin boys and both have cp. One sleeps good and the other has not slept in about 3 years. From what I understand sleeping issues are very common in kids with cp. Please don't think it has anything to do with your parenting. I have followed your blog from the beginning and you are a tremendous parent.

I have tried several remedies over the years and what seems to work best is a combo of melatonin and trypthophan. He use to only sleep 4 or 5 hours and now he will sleep 6 or 7, still not great but better. He his far more severe than E, so you might have better luck.

If she is having muscle spasms at night and can't explain it to you, that could be a cause of the screaming. If you think that is a possiblity, talk to your cp doc about anti-spasticity meds. They might help relieve any muscle spasms and they also can cause drowsiness.

I don't know what all options you have explored but I know it can be very frustrating and I wish you all the best.

Brooke