or Connect
Mothering › Mothering Forums › Mom › Parenting › Special Needs Parenting › Sleep *update in first post*
New Posts  All Forums:Forum Nav:

Sleep *update in first post*

post #1 of 15
Thread Starter 
My dd turned two last month, and she's never slept more than two hours at a time. Ever. We've gone back and forth from co-sleeping, just having her in my room, sleeping with her older sister, sleeping alone. Nothing changes.

Our paediatrician thinks she has some sort of sensory processing disorder. She's also diagnosed as having a seizure disorder, although she does not take any medication for this, and has not seized in over a year.

She had GERD as an infant, and was on various medications up until the age of twelve months. She was failure to thrive initially, but caught up quickly.

To the point: her lack of sleep at night has taken an enormous toll on my ability to parent. I have limited to no supports in place, I'm a single mother working as a trauma/emerg nurse. The necessity of me getting a decent nights sleep can not be stressed enough.

I have tried everything - cutting out naps, limiting naps, letting her sleep whenever for however long, taking her out to play two or three times a day to 'wear her out', keeping her up late at night, putting her to bed early - and everything in between.

The problem is not that I mind getting up early (I don't - dd is up by 4:30 most mornings) or getting up at night (she is up three to four times, often staying up for a total of two hours) - it is the combination of the two.

Being up every 1.5 - 2 hours, her staying up (usually playing and laughing, occasionally whining and screaming - she is not hungry, thirsty, wet or in distress; she is just awake) and then the necessity of being awake at 4 or 4:30 has finally caught up with me.

I honestly, truly think I'm on the verge of a total breakdown here. Last night I was in hysterical tears in the bathroom because I was honestly afraid I was going to spank her, in an effort to just.get.her.to.stop.

I need to sleep. My older dd (who is seven) is suffering as well. She hears all of this at night, even though there is a noise machine in her room, and it is upsetting and draining to listen to all this carry on at night. Plus I'm no where near my usual performance as a parent.

The house is falling apart, my job performance is suffering, I'm yelling and short tempered with the kids during the day.

I need help.

I'm posting here in hopes that someone has an 'aha!' type suggestion. In no way am I adverse to medicating her at this point. She has to sleep, she is tired during the day, and is in general an extremely destructive, active, very rough child.

She hits and bites and pinches. She does not play independently, and her attention span for playing with others (such as myself) is very limited. She will occasionally sit and look at books, but this is infrequent. She is rough to animals and her sister, and when she's awake, all my time is spent re-directing her and attempting to stop her from 'seek and destroy'.

She is limited verbally, which leads to lots of screaming. She has about 15 words, babbles a lot and has excellent cognition. Just poor expressive abilities.

I love her very much, but she is truly draining the very last resources I have to parent her peacefully.


I never, ever, never, ever would have believed it.

Now, I'm not counting my chickens before they hatch, but just with the addition of the fish oil, cutting the melatonin in half, and giving her a weighted blanket - we're seeing night waking (already - less than a week with all three) literally cut in half. She slept till 6 AM this morning (has NEVER happened before) and actually woke up smiling, as opposed to screaming.

As a side note - we saw the biggest difference after adding a large daily dose of fish oil (Nutra Sea is what I have)... anyone know the mechanism of action here? I don't understand why this would make a difference

We're in the middle of cutting out dairy and identifying other potential intolerances or allergies. I'm hoping to see an even bigger leap at that point.

Thank you immeasurably. I really can't express how much of a difference this has made to our quality of life. Just feeling like we have some tools to use, information to work with... it's incredible. My appreciation goes beyond words.
post #2 of 15
You poor thing, I can hear the desperation in your voice!! And I, also, have done the middle-of-the-night-crying-in-the-bathroom thing!

My son's sleep issues were all medical based, so my solutions wouldn't work for you (they all had to do with tending to his various medical issues).

I have heard mentioned on this board many times Melatonin. Have you looked into that?

About her...she is somewhat behind expressively, as you said, which might be contributing to some of her behaviors during the day. Have you tried signing with her? My middle son is very delayed in speech, but has responded wonderfully to sign, and now has a full sign vocabulary. Thanks to that, we don't have any lack-of-communication/understanding tantrums (although we do have plenty "normal" toddler tantrums!)

Also, some children with SPD respond really well to weighted blankets at night, or brushing before bed. My sensory seeker (my oldest son) responds really well to a big burst of gross-motor activity about an hour before bed, then some deep-pressure cuddling right before bed. It gives him the last of the sensory input he needs for the day, then he can settle down to sleep.
post #3 of 15
Thread Starter 
Thank you so much! Even just the commiseration is very welcomed.

I'm going to look into weighted blankets right away, I'm really wondering if that would help in re-settling herself. Sometimes she seems to wake up, and is just completely unable to roll over and fall asleep on her own.

She does take melatonin, but maybe I need to give her more? She gets a little less than 3 mg around 1/2 hour before bed. She's around 35 lbs and turned two last month. I'll have to look into that...

I never considered signing. Do you think she's too old to start? I'd definitely be willing to begin right away if she could pick it up. Maybe because she's older, she would learn signs faster?
post #4 of 15
I'm not sure that I have a lot to add, but my son is almost two and is so similar to what you describe! We just had him tested for food allergies and he has several of them. While sleep is not yet improved, his mood has been much improved by diet changes. He did not test positive for a milk/dairy allergy, but taking this out of his diet has made a huge difference. He also has sensory issues and very limited speech and language skills which have both improved with changes to his diet. The doctor we saw told me that when kids have a food allergy or intolerance, that their brain works very hard to keep them awake because it interprets sleep as dangerous. You may want to look into allergy testing or just removing some of the common foods that kids have problems with. Magnesium is supposed to help kids sleep better too I've heard. Good luck...I know how it feels and it is just terribly draining.
post #5 of 15
Originally Posted by Ceinwen View Post
I never considered signing. Do you think she's too old to start? I'd definitely be willing to begin right away if she could pick it up. Maybe because she's older, she would learn signs faster?
Definitely I also would try signing. She may pick them up quickly. I know my son has been able to pick up new signs pretty quickly and it definitely gives her a way to express herself and her needs and reduce her frustration. I've heard people say that signing will make kids speak later, but the research doesn't support that. good luck!
post #6 of 15
My son was this way until he was 3-1/2yo and we started him on fish oil. We inadvertently gave him the adult dose of Nordic Naturals 3-6-9 complete. Within a week, he not only slept 9-10 hours/night (SOLIDLY--which was NEVER the case for the short periods he DID sleep) but added a 1-3 hour nap daily. I kid you not. The change was PROFOUND. Whatever was wrong with his neurology that affected sleep was (and still is, 3 years later) affected positively by fish oil.

I would try that first before increasing the melatonin. Worst case, it may help something else. It certainly won't be harmful--ya know?

You can also try a calcium/magnesium supplement (and epsom salt baths--ensuring the water gets up on the ribs where the skin is thin, so it soaks in). We had a little trouble with this upsetting ds' stomach but in retrospect I don't know if it was the cal/mag or if it was something else (since we subsequently found 2 other major food intolerances). But cal/mag should help with sleep immensely and many people are deficient.

In the meantime, dh and I slept in shifts... because like you, we were absolutely unable to function with his sleep issues and it not only took a toll on our parenting, but on our marriage as well. One of us would go to bed from 8pm-2am and the other went to bed whenever, but was "on call" from 2am-8am. It was a HUGE help if you guys can pull that off. It definitely takes some adjusting to get yourself to sleep so early at night, but it happens.
post #7 of 15
I agree with trying the fish oil - helped for 1 of my kids with serious sleep issues! For the other, I next tried Benedryl - it worked for a few weeks, then the effects seem to taper off. I go back to it once in a while, when things get rough. I have a psychiatrist appointment coming up for her, because I think sleep is so important. I am willing to try medicines, if they give her the chance to have a normal childhood. When she doesn't sleep, her behavior is off the charts wild, and she spends most of the day and night crying. She is 9 years old, and although she does well academically, she has no friends because she is so awful to be around. After years of avoiding medication, I am willing to give it a try.
post #8 of 15
Originally Posted by Ceinwen View Post
She does take melatonin, but maybe I need to give her more? She gets a little less than 3 mg around 1/2 hour before bed. She's around 35 lbs and turned two last month. I'll have to look into that...
have you tried decreasing the dose at all? melatonin helps you fall asleep but does NOT keep you asleep. If a kid is getting too much it can cause them to wake more. My friend was giving her dd 1mg to fall asleep and she started waking up screaming every 45 minutes. She backed down to .5 and she did just fine.

My son is on 3 mg and does fine with it, but he's 3. 3 mg is actually a very high dose for a little kid if you didn't have to work your way up there (no idea of your history with that, so you might have worked your way up there). But it's a relatively easy experiment to try and might make a difference.
post #9 of 15
Thread Starter 
You guys are the best. Thank you so much for all the information.

I'm going to start on the fish oil ASAP. I actually have some Nordic Naturals that I take, so I'm going to work out a dosage for her. She likes taking a warm bath at night, so throwing in some epsom salts will be easy enough. I also need to pick up a high quality vitamin/mineral supplement for her. We live in northern Ontario, so we're short on sunlight and outside time these days.

I have no one to sleep shifts with but I can start going to bed earlier. I get caught in a cycle of putting dd down early, staying up a few hours to enjoy the quiet time... and then I'm super tired when she's up a couple hours after I finally go to bed (and I mean staying up till 9 or 10 - not any later). I also need to examine food intolerances; I'm yanking her off dairy this week and starting with that.

I halved her dose of melatonin tonight before bed. I have no idea where I got 3 mg from. I did a quick search online and it says (the majority of articles) that younger children should be started on 0.3 mg and work up from there. When I started her on it (maybe two months ago?) she was getting 3 mg right off the bat.

Apparently this nurse needs to learn to read labels again.

I'm trying to find a good site online to buy a weighted blanket, cost isn't really an issue; I'm in Canada so I imagine the cost of shipping, etc. may be slightly more.

These are all really good tips. It feels great just to be proactive, to be trying out some new things - as opposed to crying in the bathroom at midnight.
post #10 of 15
about her seizures...when was her last one? does she have a neuro? it might be worth another eeg and/or sleep study.

and the reflux can still be there. hopefully removing dairy will help, but it might be worth trying her on reflux meds again.

and the signing...absolutely she could learn! there's no age cut off. when we started signing with our middle son (who has hearing loss as well as other physical problems that delay his speech) our older son was almost 3. he picked up the signs very quickly and is a very avid signer now at almost 5. he's fully verbal, but we all sign because of our middle son.
post #11 of 15
hi. i just wanted to say i hear you. so very very much. i have a 3y old daughter who never slept, and i'm a single mama, too (and a nurse!). i won't say she sleeps well now (unfortunately), but it is better. i definitely think fish oil helps her. i give her 1 tsp of the adult nordic naturals (she's 35 lbs.), give her a 20 min epsom salts bath (3 cups) every night, and she takes 0.125 mg of melatonin every night. i know the dose seems crazy low, but i started with 0.5 mg, and she woke up totally crazy and confused from it. now i give her the liquid form, and the tiny dose works well. lately she's been waking around 3 or 4, but that's a whole different story- lol. also she sleeps with a weighted blanket now, and i think that's been good, too. the recommendation is 10% of their body weight plus one pound, but i did 20% of her body weight, and she seems really comfortable with it.
i know how maddening it is to be all by yourself dealing with a little one who wakes all.the.time. and i'm not proud of some of the times i've lost it and just yelled. there were times where the sleep deprivation literally almost made me feel crazy - it's just not realistic to be mentally and physically healthy on constant and sustained sleep deprivation.
best of luck with everything. we haven't pulled dairy yet, but i think that's a great thing to try. i read a study that says to really gauge if it affects your child's sleep, dairy has to be removed for six weeks - bummer, but good to know.
and just want to say i hope you keep feeling free to come to this forum to vent. it's been a godsend to me, and i write posts to this forum in my head all the time - lol! here's to a good night sleep for everyone .
post #12 of 15

Other thoughts...

Melatonin is great for going to sleep but not putting back to sleep once down for the night.

We also used Benadryl for middle of the night awakenings. The effects do wear off over time but is great for emergencies.

Have you talked to a doctor about medication? I would. Our sleep issues were resolved with medication. Not sleep medication per se, but once his mood was somewhat regulated, he slept through the night. Go see a doctor, get a script and fill it. You don't need to use it or you can use it once and awhile. But on the nights like you described, you need to have something that can help.

Keep us posted.
post #13 of 15
How difficult.

What I would try:
Extended release melatonin in the smallest amount that will put her to sleep. Then I'd dose again when she wakes the first time in the night. The second dose may have to be higher than the beginning of the night dose.
The hope is that you'd get a combined seven or eight hours.

Some kids that don't respond to melatonin respond to Valerian in my understanding. I don't know anything about that from personal experience. But given that the melatonin wears off in 1.5 to 2 hours I'd wonder if it's not the right choice as even non-extended usually lasts three or so hours however she's taking so much that might be part of it too.

I, too, wonder if the reflux is waking her. My son was on meds until 3.5 and still sleeps with his bed elevated (top part on stools) six inches. Maybe see if she does better with meds for reflux again?

Weighted blanket might help. We strongly considered trying to swaddle my son again at that age. He wore a tight one piece swimsuit to bed during that age range provide that tightness.

If the suggestions in this thread don't work I would talk to a doctor about medication. Actually, I'd make the appt. now for a couple of weeks out. This isn't healthy for anyone and I worry about your health/driving/work. I wouldn't do benadryl regularly as it interferes with sleep cycles/quality in studies and has other issues in kids particularly however I know from experience they do it with rough sleeping kids in the hospital.

Finally, I think she needs a sleep study. Our geneticist ordered one too look for seizures when we were having major sleep issues.

post #14 of 15
I forgot...does she have an underlying diagnosis? That's a lot going on in one kiddo and I'd assume it's all related in some way. Is her muscle tone normal?
post #15 of 15

Someone posted this website for me recently on the weighted blankets. It shows you how to make one and it is sooooo easy. I am severely impaired when it comes to sewing, etc., but it only costs about $10 to make a small one and if you have a sewing machine could do it in an hour or so.
New Posts  All Forums:Forum Nav:
  Return Home
  Back to Forum: Special Needs Parenting
Mothering › Mothering Forums › Mom › Parenting › Special Needs Parenting › Sleep *update in first post*