sleep issues

[delaynajoy]

Hi everyone
Just wondering what it is like for you guys in regards to your child sleeping at night...I know we are very fortunate, as DJ does not require any assistance to breathe at night. What happens though is she cylces between sleeping through the night for a short period of time, usually 3-4 days, then she is up, sometimes 5 or more times a night, never really getting more than 5-6 solid uninterrupted hours before being up every 45-90 minutes. It is exhausting, especially when we both have to be up early to work. She calls out and becomes very anxious if someone does not come (or on occasion, she will be up and out of her room wandering). We cannot seem to let her 'cry it out' so to speak, as she just keeps everyone in the household up and escalates (we need to watch for muscle cramping when this happens). DJ will not 'sleep in' either - if she misses sleep, she's then down in sleep and does not catch up. She does not nap. A naturopath suggested a product called Passiflora Plex to give to her. I've hesitated, as some of the ingredients seem a little toxic (St. Ignatius Bean). DJ takes forever to fall asleep if she does not have Melatonin (she takes 1.5 mg/night). This helps her fall asleep within 20 minutes of taking it, but does not keep her asleep.
We have good sleep routines in place etc. Any suggestions or ideas? Does anyone else find the same thing???
Lisa

[delaynajoy]

another thought...
is something like this habit forming??? will DJ become dependent upon it to sleep through the night as she seems to be now for Melatonin to get to sleep???
I hate thinking that I'm adding one more thing to her system!
Lisa

[anne]

Hi Lisa,

Don't know if it is habit forming.

Maia has developed strange sleeping patterns 7 months into taking steroids. We too have been absolutely strict with bedtime routines and times. She used to cry a little when we would put her to bed.

At the same time there was a change in her routine, my mother in law who lived with us for 5 years was taken to the hospital and was then transitioned to an assisted living facility.  Maia started getting up out of bed after an hour, closing her door and getting markers, crayons and books. She would try on 4 different nightgowns and we would come down to find the light on with her back in bed, sound asleep on top of the books. She would wake up at strange intervals (though usually only once a night) and not go back to bed as asked, but would eventually fall back asleep.

Since then, we have moved her bedtime from 7pm to 8pm to make sure she is really tired and then she started crying inconsolably when we left the room. Trying to console her only to leave would precipitate more crying. We finally have settled on a routine, where my husband or I lie down next to her until she falls asleep- usually 1/2 hour and then get up slowly and she is sleeping through the night.  Usually we end up falling deeply asleep ourselves and an hour goes by before we get up to go to bed.

Anne

[cpenner]

Emma slept beautifully up until the end of last winter.  The docs in the NICU didn't want to let her go home because she slept 12 hrs a night - I just thought how lucky all my girls were like that straight out of hospital!  Anyhow, last year we had trouble transitioning her off of the bottle and she didn't sleep for days at a time.  We've gotten that straightened out, and her sleep patterns improved, but she still has these rotating periods where she doesn't sleep well, is restless and is up a couple of times a night.  I know Trish has talked on here about having a lot of these problems with Owen as well.  Just after Christmas, Emma had a tough time where she woke up crying and was moaning in her sleep and very restless.  After a couple of days, I gave her Advil when we went to bed (she has a g-tube) and she slept much better.  I took her in, but there was nothing to see of course.  Just recently, she's done it again - and I'm wondering if we need a better bed or what is causing the pain for her.  Emma also takes melatonin at night - one of the things with her is that she thinks far too much (don't know where she gets that from ) and if she wakes up in the night she gets very anxious and has a hard time going back to sleep.  One thing our ped recommended was slow-release melatonin, which I haven't been able to find here, but could probably get on the net.  We just put the melatonin in her bag at night (dissolve it in her formula) and that way she gets a steadier dose for 5 hrs or so.  One thing I can say about melatonin is that our Kayla (our 13-yr-old girl with ADHD) and Ben (7) have taken varying doses for a few years now, but as their sleep patterns get better they are able to take less or none at all without any side-effects.

[delaynajoy]

Thanks for your replies...
I used to lay down with DJ to get her to nap (when she was 2), and she still loves it if I do that. It sure helps when we have to get her to sleep for an EEG! I've taken to doing that on some weekend mornings, just so that we can get a little more sleep! Usually Dan gets up when Anna gets up, and he goes downstairs with the girls while I try to catch another hour of sleep. It is rather crazy, the things we do to get our kids to sleep better! DJ sounds a lot like Emma - mind racing when she wakes up most nights, possibility of pain (lately it is her lower back). I haven't heard of the slow-release melatonin, so I'll have to inquire more about that.  Carolee - have you tried one of those 1 inch memory foam toppers? DJ seems to be more comfortable now (our OT suggested nothing deeper, as she might be 'stuck' and not be able to turn/move around easily). I'm really REALLY looking forward to the Easter break!
Lisa

[cpenner]

Emma sleeps on a eggcrate foam mattress (crib size) on top of another foam mattress (twin size)  It may be time to get a new one as we've had this one for a few years.  When we talked about memory foam with one of our therapists (not a current one) we were told to watch out for that with Em because the memory foam provides a certain amount of resistance - it "pushes back" in a sense and could cause her to have sores.  We haven't looked into it any further though, but it looks like we'll have to spend some time on that now.  
Emma loves her little dvd player and that buys a little time on weekend mornings

[delaynajoy]

I talked with the nurses in neurology the other day, and they thought that DJ may be waking up at night sometimes because of seizure activity. They have increased the dose just a bit, and DJ has been sleeping through the night again. The nurse also mentioned that the melatonin is not habit forming, and that it is perfectly safe to help her sleep longer. I thought it just helped her GET to sleep quicker (which it totally does), but didn't realize it should help her sleep longer too. The nurse said they start with 3mg with infants that need it, so giving DJ 1.5mg is even less than that. She thought we should give her the 3mg, but I figure if it is working at 1/2 that, why give her more?
Does anyone else use melatonin?
Lisa

[cpenner]

We have Ben, Emma, and Kayla using melatonin. In Kayla's case, she's now 14 and has been using it for 4 yrs.  I also use a small dose when Barry is away at work - it helps me go back to sleep if I wake up anxious in the middle of the night as well as helps me get to sleep. If I take more than my very small dose, then I do find that I have more trouble getting going in the morning, so I would think that if the 1.5 is working for DJ, then a higher dose might make it harder in the morning.  There is also apparently a slow-release melatonin that we haven't been able to get our hands on yet, but has been recommended by the paediatrician. I think Trish might have mentioned they use that for Owen, but I'm not sure.  Kayla and Ben used to have to use clonidine at night to sleep, so we are very happy just to use the melatonin, as it is a natural product.  We haven't found any adverse effects when we haven't been able to use the melatonin ie. withdrawals or inability to sleep.  We have also been assured by all manner of doctors that melatonin isn't habit forming, and we've found that to be true in our experience.

[Owen's Mom]

We have tried melatonin with Owen but didn't see much of a difference in his quality of sleep.  He has never slept through the  night and sometimes needs to be rolled four or five times in an hour!  Needless to say there isn't much sleep happening in our house.  He just had another sleep study and everything came back fine.  The suggestion was made to have him meet with a Psychologist in order to learn relaxation techniques.  Since Owen didn't learn to self sooth when he was a baby due to always relying on us to roll him over this has caused him to wake up all night and not be able to go back to sleep on his own.  At least this is the current theory......Owen also has high anxiety at night time when his body is stuck in a position and he cannot move on his own.  I try to get to him quickly to help with this but it still happens at times.  I just read in Exceptional Parent magazine about a family dealing with this issue for many many years who finally saw improvement after their child was put on a very low dose of xanax.  This helped the child sleep longer and he was more relaxed.  They didn't see any issues during the day from it.  I would hate to do this to Owen but the comparison in the stories was amazing and I worry about him going to a full day of school next year.  I just don't see how he can make it through with not sleeping at nigh.  I am working on getting an appointment with the psychologist and  I hope that this proves to be helpful.

I assume that DJ has seizures?  Owen's neuro wanted us to do a 72 hour study to see if he was having seizure activity during the night but this has never been caught on any one of his four sleep studies.  We also have not noticed it during the day or night.  So we opted not to have the study done and instead had another sleep study which would look at any night time issue.

[cpenner]

Trish -

Hope going to the psychologist finds answers and a solution for you I would think that if a dose of a drug can bring better life quality to Owen and can help him have less anxiety (as someone with a bit of chronic anxiety developed later in life, I can tell you it's not pleasant) and the side-effects aren't bad, I would encourage you to try it.  None of us want to put our children on medication, I struggled with it very hard with Ben and now with Emma, but sometimes there is no choice, and it proves to be the best thing because it increases their quality of life, which, after all is the most important.  It seems like it would improve yours as well, and that is very important in and of itself.

[delaynajoy]

DJ does have seizures (partial complex) but she has not had a sleep study done. Her 2nd EEG confirmed she is still having frequent seizures, even on the medication. Doctors want to keep her on the meds for another year and see what happens. They did up her med dose a slight bit when I called about the crazy sleep issues - they thought she was likely having seizures at night, as her EEGs show seizures when she is both awake and asleep. They recommended giving DJ more melatonin part way through the night if she woke up, and we did this, but found she had rough mornings the next day. We stopped giving her more in the night, but increased the initial dose to 3 mg (we were told this is what they give infants at the hospital), and she has been sleeping better. My only worry is that she is tending to start waking up again. It is like she is good for awhile, then maybe her body adjusts, and she starts getting up in the night again, or very early, like 530 (not enough sleep for sure, especially when she starts school!).
Anyway, we're still trying to figure it out, but it has been better. Trish - you must be exhausted! How do you do it???
LIsa

[Owen's Mom]

I think that I have just gotten used to sleep deprivation.  Now if I get a good night's sleep I don't feel normal!  Carolee you are right about the medication.  I plan to discuss it with the MDA clinic and the psychologist when we get an appointment.

[cpenner]

Wishing you answers and some relief for you and Owen, Trish