Sudden sleep awakenings.....(very long.)
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| Sun, 10-02-2005 - 5:00am |
I'm not exactly a regular here...but I have been here before asking questions. I have a daughter who is now 21 months old, and although we don't have an official diagnosis yet I feel that she is somewhere on the spectrum. (I have quite a bit of experience with autism.)
We are having some pretty major problems with her at this point...biting herself, throwing herself into walls...ect. We are working on all of those things and more. She does see a Speech Therapist who has extensive experience with kids with Autism, and has a son with Autism as well.
I already had my hands full with those issues and more when a couple of weeks ago she started climbing out of her crib. We knew it was coming but had hoped it wouldn't happen now. We also hoped after she hurt herself climbing out she would not do it again. No such luck, she just doesn't connect the action with the pain.
So, after a few tumbles out of the crib it was apparent that wasn't going to work. So we moved her into a playpen. This was probably at least ten days ago. That was better because although she can still climb out she doesn't hurt herself. We use Super Nanny's stay in bed technique to keep her in bed to fall asleep...and then she would sleep and stay in there until morning. Usually 11-12 hours. Then she simply climbed out and played, banged on the door, whatever when she woke up.
We had at least a few days of uneventful sleeping in the playpen. (Even going to bed in less than a half an hour.) Then one night we put her in bed like normal, everything was the same, we never even took the crib out of her room so that it would still be in there. We are huge on routine, she has a fan in her room to help keep it cool, and drown out any noise...that has been there for weeks. She is on a specific diet to gain weight, no sugar, same drinks each day, same medicines, ect. She went to bed around 10:30 which is normal for her. And then she woke up crying at 3am. There was no noise that would have woken her up, nothing had changed in her room, temperature was good...so I figured maybe she was getting sick or something. Went in to try and calm her down and get her to sleep and it just wasn't happening. She wasn't upset anymore, just was not interested in sleeping. We ended up sitting in there until 6am waiting for her to go to sleep. Finally I tried taking her to bed with us, no luck. Finally at 7am I ended up putting her in the playroom...which is our "safe room" in the house. Where she can only minimally hurt herself, and she can't get out of the room. She stayed there, finally went to sleep and woke up around 10am.
The next two nights were fine, slept all night.
Then it happened again, woke up at 3am...would not go back to sleep...ended up spending the night in the playroom because she was going to wake up her sister.
Then another night where she slept.
And then again she woke up in the middle of the night, although this time at 6am instead of 3. I just took her straight to the playroom this time and she eventually fell asleep again and slept until almost 11am.
Now, sleeping in the playroom is not something that happened before this, so I don't think that is a motive. And, there is also so many factors to consider which makes her so complicated.
She has epilepsy, which had previously been under control but in the last couple of months we have noticed more seizures. 2 big ones in the last 2 weeks or so. Both of which happened when she was coming out of sleep. Although she has not had nocturnal seizures before that we know of...her sister has.
She might have sleep apnea, we haven't gone through the diagnostic process yet but there is a strong family history.
There are so many factors to consider with her that it makes it very hard to determine the cause of this. However, since her PDD symptoms have been worsening and this has now started...I am going to operate under the assumption that it is somehow connected.
Right now I plan to try:
Raising the dose on her seizure meds, something we were going to do before but we decided against it because she was doing well. If the seizures are waking her up this should help. Also it makes her tired, so if that is the problem it should help her sleep.
Getting blackout curtains for her windows and/or taking out her nightlight.
A heavy blanket...she is very undersensitive to sensory input so I'm hoping that might help.
We are also in the process of having a crib custom built for her that she won't be able to escape from. One that will keep her safe, and hopefully help her sleep better. Hopefully it's as simple as preferring the crib to the playpen.
Any other ideas out there???? I think we've tried just about everything as far as her bedroom goes....there just is not anything that has changed other than the crib to playpen...I can't figure out what would be throwing her off right now.
However, I am exhausted, whatever the cause might be! We have an appointment with the Neurologist on Halloween, and I plan to ask her about PDD, ect. We are on the waiting list for Neuro Psyche, and we are probably looking at around May for an appointment...maybe sooner maybe later. I hope we can stick it out that long. In the meantime I might have more questions here....it is so weird for me to read posts here because they sound so incredibly familiar to me.
Thanks in advance for any help or ideas...

Well, it sounds like you are doing everything right.
IMO there could be two possible reasons for this (maybe more): brain chemistry/activity or sensory issues (or both!). It sounds like you have both of those bases coverd. The step after that would be to look into sleeping meds, but I think that should happen after the seizue situation has stabilised, and after you have exhausted any other options.
One thing (the only thing) which worked for my DD, who used to wake 3-5 times each night, was the Willbarger brushing technique. Even now, at 5yo she started waking at night with the added stress of kindy, and I re-instituted brushing for a few days. It worked.
However do see some differences in our situation: my DD woke because of sensory issues. She was *tired* and wanting to sleep. Rocking her for a few minutes sent her back to sleep mode -for maybe 40 mins to 2 hours. BUT because you mentioned the PDD behaviours have increased, that set my radar going. We noticed this with DD, too. Added stress = more PDD/sensory issues = less sleep = more stress = more PDD/Sensory issues... It totally becomes a vicious cycle!
Does your DD see an OT? If so, it may be a good idea to discuss this with the therapist, or to have her evaluated for OT.
GL, please stick around and HTH,
-Paula
visit my blog at www.onesickmother.com
hi there,
i have dealt with alot of sleep issues with my 3 year old so far. to the point where i was utterly exhausted. one thought i had...
would it be possible to put her crib mattress directly on the floor? child proof her room and put a spinny thing on the door knob. i had to do that around 20 months or so for the same reason. with a twin on the floor, i could lay next to matthew until he fell asleep and i could sneak out. or i could just fall asleep with him. either way it helped me to get a bit of rest too. my son ended up having a severe regulatory issue, so he is on risperdal and trileptal. the trileptal helped with sleep and mood stability as well as being an anti-epileptic that maybe you could try?
could you decrease or eliminate her nap so she's more tired at night? maybe try melatonin or a bit of benadryl to make her sleepy? i think the ideas you want to try sound excellent.
keep us posted, valerie
ps-what is super nanny's ides you mentioned?
I will definitely look into the brushing, that is one thing we haven't tried. I've discussed it with the OT, but we haven't tried it yet. (We did have an OT for a while, until he decided to quit...we are looking for a good private OT right now.)
Definitely the red flag behaviors have increased. She is biting herself hard enough to actually draw blood, where before she wasn't even leaving a mark. She is also biting her sister more...which is awful. This has definitely been getting worse. Along with the meltdowns when she hears a train, siren, things like that. However, vaccuum, garbage truck, ect don't bother her. Trains, and sirens are the big ones. (Which REALLY sucks because we live a mile from a hospital AND train tracks! Needless to say we are definitely moving.)
My biggest concern with her is head injuries...she will throw herself into whatever is there at the time...whether intentionally hitting it or not. She's thrown herself onto hardwood, tile, carpet, walls, chairs, dogs, ect ect ect. And she never cries. A couple of weeks ago she ran full force right into a open door edge and had a bump that was at least as big as a marble but she didn't cry. The Dr was once again amazed because he said it was definitely a hematoma and had it been much worse he probably would have done tests to make sure it wasn't fractured! The kid just does not feel pain (except that she hates getting her blood drawn!)
The bedroom is definitely childproof...and I would like to just put her mattress directly on the floor. The problem is that despite climbing out of the crib and playpen, she likes the security of it. She won't sleep just on the floor or mattress. Even when sleeping in that playroom she has the Winnie The Pooh couch that she sleeps on. I tried that in her room and she wouldn't do it. The only time I can get her to fall asleep with me is right after a seizure.
Her door knob is broken so she can't open it yet anyway. She just bangs on the door she can't get out YET.
Right now at night she gets Phenobarbital and Benadryl. The Phenobarb is for her seizures, and the Benadryl is for her allergies. If she doesn't get that at night she wakes up horribly stuffed up in the morning and has a hard time breathing or eating. I am thinking about Melatonin, but I figure adding another sedative on isn't a good idea right now. I'm hoping there is another solution, I hate having to drug her up. (Although, I must admit that the seizure meds do seem to help slightly with the PDD behaviors.)
Super Nanny's Stay In Bed Technique is pretty much that you do the bedtime routine, and then hug, kiss and put the kid in bed. And sit down near the bed. If the kid climbs out, you say Bedtime and put them back in bed. If they do it again you just put them back in without saying anything. No hugs, no talking ect. Eventually they fall asleep and you sneak out. Each night you move closer and closer to the door until eventually you don't have to be in there with them. The first night we did it took her 2 hours to fall asleep, and we were down to 15 minutes to fall asleep before this started. I think we were close to being able to not be in the room.
This new season of Super Nanny should be interesting...There is talk of possibly a child with autism being involved so I'm hoping maybe we can all get some ideas from the show if there is. She has done 2 with kids with Down syndrome so you never know. :)
Our Webpage: www.aliandpeanut.com
Our local Down syndrome group:
quick fyi--melatonin is not a sedative. it is a synthetic version of something most of us make internally. it is considered a supplement, does not need a prescription. however, not sure if it would effect seizures so you would want to check on that.
hang in there, i'm sure you'll figure out what works best for your daughter, valerie