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please help with ideas...

post #1 of 17
Thread Starter 
i feel like a broken person right now. i'm a single mom to a lovely daughter who has sooooo many sleep difficulties. she's currently 20 months, and she was diagnosed with sensory integration disorder when she was about 15 months. this is a hard age to work with, so the OT did six sessions, then sent us on our way. she said to "check back in" when she gets a little older.
she has never slept well. you know how tiny babies sleep long and hard and easily. that was never her. never. she startled so easily, i could not put her down (nor could anyone - even the "experts" in my family) and have her stay asleep, and she woke to everything. for about the first year of her life, she'd (at bedtime) sleep for 30 minutes, wake up, i'd nurse her back down, she'd sleep for maybe 45 minutes, etc... at 20 months, she takes one hour to get to sleep every night. yes, we have a consistent routine, we bathe, read, sing, use a loud fan to muffle noise, etc. yet no matter how TIRED she is, it still takes so long for her to fall asleep. the same goes for naps. she's been taking only one nap since she was about one year old. and same thing, we have a routine, and no matter how tired she is, it frequently takes her an hour to fall asleep. then like clockwork, wakes 30-40 minutes later. i nurse her back to sleep, but then she never gets in a deep enough sleep after that to allow me get out of bed. so i lay there, completely still every day... i've tried putting her down a lot or a little earlier, a lot and a little later, you name it.... for over 20 months, i have been spending HOURS every day just trying to get her to sleep.
i do not personally feel that CIO is right for her, so if that's your suggestion, with all due respect, please don't write me. she does seem to be the type of kid who needs to blow off steam and wind down quite a bit. since a year-old or so, after she nurses for a while, i frequently have to hold her and let her talk and talk and talk, then sometimes cry in my arms. i sometimes do almost like a human swaddle (gently), and she seems to need that sensory input to be able to settle at all. she's certainly a sensory seeker, and has lots of trouble with balance and vestibular sense.
i know this is long. i just wonder if anyone else has had real, true problems with their sensory kids around sleep. i don't expect her to sleep through the night or take 3 hour naps. i just want to feel like she's well rested, and that it's not such a nightmare for us both EVERY SINGLE DAY. some days, i just cry after she goes to sleep. it's like there's never any relief. thanks for listening.
post #2 of 17
I'd see if you can find an OT who will keep on working with her. I'd also see if they have a weighted blanket that you can try. Might she like a kid's sleeping bag, or to be kind of swaddled in a sheet? I used to put a folded bedspread on DD so it had a little bit of weight and she liked that for a while. I know people who have used melatonin, not sure what age you can start. You might take a look at The No Cry Sleep Solution For Toddlers too. Hope you get some useful ideas.
post #3 of 17
funny we should "meet" here tonight. I am near tears awaiting my 3yo to fall asleep. She has SPD and also ASD and a few other lil disorders thrown in for good measure. There is a suggestion of a DX of Aspergers down the road and some false hope of no DX added to the mix. SHe is alot like your child in regards to sleeping. One thing that has helped us a bit was adding a magnesium suppliment to her daily nightly routine. This gets her bedtime a lil bit shorter,but more importantly it lessened her night wakings to just 1-2x per night. There is a fab product called Peter Gillians Natural calm. HE also makes a baby calm and a kids dose. my 3yo dd takes about 300mg per night of the adults dose for reference. There is really no upper limit to how much magnesium the body will process IOW you can't OD her on it acording to the research I have done. We know to take the dose back when she has very loose stools- more than usual. The stools should be comfortably loose. Children with these spectrum DX are often lacking in magnesium I have read and this helps to calm and focus them. It's not a miricle cure or I wouldn't be here, but it has helped a bunch. She used to wake 3-10+ times per night. NAps have always been a nightmare. My advise would be to get the childrens calm and try the lowest dose possible and add a bit every other night til you find the right level. Try googling magnesium and SPD or ASD for more info.
I have also tried catnip tea, and alms forte for kids. The mag has worked the best. I am sure there is better advise out there and I hope to read it also. The magnesium is a decent start. ((hugs)) it's tough sometimes huh? Take care of you too mama

post #4 of 17
I'd look at the no cry sleep solution as well.

I wonder if she's too big for an actual swaddle?

My child (one of them..the one who is complicated and has sensory issues among other things) has to sleep in complete darkness (totally dark) and a white noise machine. It's still hard--particularly when he gets over-tired. He too would be up forever before falling asleep. Given your daughter's nap situation and night sleep she's probably over-tired. Andrew really struggled with naps too which made it all harder because by bedtime he was already over-tired. Now we do melatonin with Andrew. We didn't start that young but maybe I would have knowing what I know now. He is just so affected by lack of sleep. Two different genetics doctors suggested melatonin to us. We even used it (with dr. approval) when he was hospitalized after trying for a couple of nights to get him to sleep there. Folapro folic acid was sort of relaxing for him too and helped for a long while.

I know that isn't encouraging. Some kids really do struggle to settle down and sleep. I think breaking the nursing to sleep (gently) might help and I imagine that book or the no cry one for infants has ideas for doing that.

I know this is hard.
post #5 of 17

I couldn't read without posting. I can't imagine how difficult this must be for you (and your daughter) and I admire you for how you work with her and honor her feelings.

My eldest (now 10, and a wonderful child) was very high needs, now dx with a neurological disorder (which explained a lot to me!) but at the time was just my first child, and I was clueless.... She slept much like your daughter - always slept on someone's shoulder, or napping and nursing, and naps were 30 minutes - you could set your watch by her.

The good news I can hold out to you is that once she cut her last molar, after she was 2, her sleep changed dramatically. She was a different child. In hindsight, she was just so sensitive to the slightest discomfort (that hasn't changed!) that it made falling asleep very difficult. If you have reason to believe that your daughter is feeling teething pain, I encourage you give her Motrin/Advil without guilt. It can make all the difference for that pain, and as long as you can give it with something in her tummy (nursing is great, or crackers, etc) it is very safe.

I also saw that she had a strong need for routine during the day, and anytime that routine was disturbed, it caused us trouble at bedtime. That was hard for me, since I have ADHD and do not do routines! But she really needed it.

The other things that helped us was keeping the lights dimmed - my DH worked nights, then, so it was just she and I, too (tough to do it on your own, I know ) and I wouldn't even turn lights on as daylight faded. If necessary, use very dim light. Just avoid bright artificial light.
I also used a small CD player in our bedroom (we co-slept) which played very soft, soothing music, no words, always the same one. It seemed to help her fall asleep and back asleep when she roused, hearing the same thing. (She seems to be a very auditory child.)

The other thing, really, was time. After teething finished, she gave up napping entirely - around 2 1/2. But she then slept 12 hours, which was wonderful for us both. She has never been able to fall back asleep, not as a baby, toddler, or child, even now if she wakes in the night it is hard for her, but falling asleep has gotten much easier. She sets her own bedtime, and nearly always sleeps wonderfully. (I say this as she is reading over my shoulder, having been woken by the fireworks from the Fireman's BBQ....)

The other thing I might suggest is E. Pantley's books No Cry Sleep Solution for babies and the one for Toddlers; I haven't read it in years but I know it helped us.

I am sure the other wise mamas (and daddies!) in this forum will have other ideas to share, too. I just wanted you to know that you are not alone, and it does get better! We are here for you whenever you need support.
: (I love this one!!)
post #6 of 17
You sound like a great mama, sensitive to what your child needs and giving it to her. Nursing her down is still going to probably be the best way to get her to sleep and back to sleep (I still nurse my 3.5 year old to sleep and 3-4 times a night - when we tried nightweaning, which we did for 6 weeks, I had no means of getting her back to sleep and we were frequently up for several hours in the middle of the night, neither of us happy).

We tried the No Cry Sleep Solution but for us it wasn't very helpful. I really think it is geared more towards neurotypical children who may have gotten into some behavioral/habitual sleep patterns, and not so useful for children with other types of needs, such as sensory needs.

I think its odd that the OT didn't want to work with her because she is "too young." I really think you should try another OT. There is a whole lot an OT can do at that age for our sensory kids - including identify what kinds of sensory stimulation might help regulate/relax her nervous system. Maybe the OT's job is to teach us parents how to help our kids more than they directly work with the kids, but that's okay.

During the day, we do lots of swinging, jumping, and on the advice of an OT, climbing. I hadn't thought climbing was related to meeting sensory needs and assisting with sleep but I guess it is, according to the OT.

Melatonin helps her fall asleep (doesn't keep her asleep but definitely helps shorten the time it takes to fall asleep). A good brand is needed - many brands are worthless. We use melatonin from the Vitamin Shoppe and it seems to work fine. We have 3mg powdered capsules and I open the capsule and sprinkle just a tad on her applesauce or yogurt - I couldn't say for sure how much but its definitely less than 1 mg. We're currently also trying 5-htp, which is supposed to help her stay asleep, increasing the dosage very gradually (starting at less than 25mg) but so far I haven't noticed any difference.

A weighted blanket is a great idea and might help cut down on frequent wakings. An OT can help you find the right weight/size for you, but if you don't get an OT to help, I can tell you what we did. I made one for DD out of her old receiving blankets (which people seem to give you way too many of when you have a newborn) and 15 lbs of rice. I sewed pockets about 4 inches square and put 1/2 cup rice into each pocket. The blanket should go on after she is asleep, and be pulled up no higher than nipple height so that it doesn't restrict breathing in any way.

Ultimately though what helps her get to sleep the easiest is movement combined with nursing. We rock and nurse to sleep every night. The only other thing that works is driving in the car.

Lastly, between 18 and 24 months I really thought I was going crazy with the sleep issues. They seemed at their worst then. It WILL get better.
post #7 of 17
Your DD seems to have similar sleep issues to my DS (now 30 months) who also has SPD. His sleep was atrocious until he was about 27 months (when he more or less nightweaned himself). Before that, the issues you described, I could have written about DS. The first 18 months or so were nearly impossible. Things got slowly better after that. Here's what we've done...
- noise generator in the bedroom
- blackout shades making sure the room is dark
- keeping the room temp as steady as possible
- keeping DS's clothing appropriate for him, meaning not overly dressing him since he overheats easily
- loose cotton night clothes (a tight waist bothers him)
- keeping his diaper waist loose
- moving myself and DS out of the bed with DH (DS needs his space even though he has to always be touching someone during sleep)
- moving into a quieter room in the house where the sounds of the shower in the morning and the telephone can't be heard
- try to keep a routine as best you can, even though with kids like this it's hard to do
- enforce naps as much as possible; I would drive him down in the carseat when he really refused to nap any other way. I found that when he napped it helped in getting him down at night (but it was still hard).
- make sure he gets enough sensory activities and movement during the day
- we did some brushing protocol, but largely that was for sensory issues relating to the mouth and hands; perhaps it helped with the sleep as well (when his eating issues were improving with therapy, it seemed to also occur at the same time his sleeping issues were slowly improving; I think they are related)
- DS had issues with gas causing him discomfort; my food sensitivities were causing problems for him because the Ig's were coming out in the breastmilk; my avoiding certain foods really helped this problem
- he had and still has what I believe are night terrors, and there's not much I can do to help this except try to keep him on a sleep schedule
- if a bath seems to get your DD excited and active, then change the bathtime to earlier in the day instead of at night

It was always difficult to get him to sleep, and it seemed to vary over time as to what worked:
- rocking/gliding
- rocking/gliding and nursing together
- nursing laying down on the bed
- swinging in the toddler swing we mounted in the basement
- bouncing him on the stayball
- letting him play himself down
- driving him down in the carseat (when nothing else worked)
- reading him down (most of the time not very effective)

I started a thread on SPD and sleep disorders awhile back, but I can't get to it at the moment because the MDC search engine is temporarily disabled.

I'm sorry you're having to do this all by yourself. It was nearly impossible for me, even with the two of us, but I can't imagine having to do this all by myself.
post #8 of 17
You can do it!

I have a typical 23 month old son and the first part if his life his sleeping patterns were exactly as you aer describing. I used to hold and rock him and cry and pray for Daddy to come home early so I could go put him down, go to the bathroom or have a shower.

I felt broken like you do and my son didn't even have any challenges. Remember you will survive this.

Nothing I read online or in any books helped at all and there was NO WAY I was going to do the CIO method. Then, like magic, a wonderful lady appeared in my life (ok, so I read about her in a magazine article, but it felt like magic). She is a sleep fairy. Ok, not really, she is a sleep consultant. I didn't even know professionals like her existed. At the time I needed her she only worked locally, so I paid extra to have her come to my home. I now understand she works with families through email and telephone.

I will tell you that within 2 weeks of working with her, my son slept through the night. Every night. All night. He naps everyday for a minimum of 2 hours. Last night, we were at the park, playing, having a bbq picnic with his friends, family and cousins. He was done and asked to go home to bed. He asks to go to bed if I miss it.

I know that your dd has some special challenges, but I wonder if it might be worth contacting this lady or someone like her in your area. It might make a difference? I will say I did EVERYTHING she said and so did my husband. We followed her suggestions to the letter, with amazing results. And I never left my son to cry it out or abandoned him when he needed me. There was lots of physical contact and connecting between us at bedtime.

Good luck!

post #9 of 17
I'm right there with you. My ds is almost 23 mo and we are having a terrible time with his sleep. Dh works at night (gets home at 11pm) and I am responsible for all night waking so I know how draining it is. I have to hold ds to get him to go to sleep. I always had to swaddle him as a baby too. Even now I sometimes wrap the blanket around him so he sleeps better. Even when he is tired it takes at least 1/2 hr to get him to sleep, other days I spend an hour or sometimes 2. Then when I do lay him down, there is a 50/50 shot that he'll wake up before I even get to his door. Sometimes he'll wake up within the first hour that he's asleep and again it's a 50/50 shot whether he'll be quick to fall back to sleep or if he'll be up for another hour or three. He almost always wakes up between 1 and 2. It's gotten so that I just don't even go to bed till then. Dh is still up so I just stay up even though I'm tired so I don't get woken up. Again, sometimes I can get him back to sleep right away, other times he'll be up for an hour or so and need a bottle to go back to sleep. Some nights I fall asleep out on the couch with him then and we just sleep together. If he's still in his bed, he'll wake up again between 4-6. At that waking he usually signs "more eat" and points to the kitchen so I get him a bottle and we cuddle on the couch (on the recliner end). We usually fall back to sleep together and he'll wake for the day between 7-9. Naps vary, depending on how bad of a night we've had. Lately they have been very short. Less than an hour between getting him to sleep and him actually sleeping. I know he's tired. Today before nap he was almost falling asleep in his high chair, but still he doesn't sleep.

I've been giving him calms forte for months (just at bedtime). I'm not sure that it really works for him. I've got to do some research on melatonin or some other supplements. He had some bad bug bites the other day, so I gave him some benadryl hoping that besides calming the itch, it would also help him sleep. It didn't.

I've considered making a weighted blanket. When he was an infant I had a pillow with seeds in it (can't remember what kind), anyway I used to drape it over him and it helped him stay asleep. He wakes at the smallest noises it seems. I've got a music cd and just put a fan in his room too.

I do have to say that my dd, who is now almost 7yo, had a horrible time sleeping when she was little too. I had to hold her very snuggly otherwise she would never sleep. I swaddled her forever too. She would sleep for 15min then be up for 4hrs around the clock. Sometime between 2 and 3yo I remember her sleep suddenly changed, but even then I was surprised that she was suddenly sleeping. Now she goes in her room about 9 and reads and plays on her bed till she passes out. Usually before 10, but some days later than that.
post #10 of 17
I don't want to head off topic, but I am interested to see that a couple of people use melatonin, and very happy to see that their docs recommended it.

I have a 4.5 yo who has ALWAYS had a terrible time sleeping. We tried No Cry Sleep Solution, I've read many sleep books, we're working with a therapist on ways to help him wind down, but it still takes 1-2 hrs to get him to sleep many many nights. And he still wakes in the night, and often ends up sleep-deprived and pretty wild.

I give him melatonin (usually ~0.25 mg) maybe once a week when we're all so exhausted he just HAS to sleep and it works well, but I have always hesitated bc I couldn't find any clear recommendations for giving it to little kids. (I didn't even ask our ped bc she is very conservative about things like this and would almost certainly not recommend it.) Can anyone who uses melatonin point out some good info on using it with young children? (Like why some children might need it, what the potential side effects are.

to the OP. Sleep problems are so so horrible, and sleep deprivation is the worst.
post #11 of 17

I could have written this post a few months ago. In fact, I wrote something very similar. I was in a very dark, scary place, very seriously at the breaking point. It was the most difficult time of my life.

I second what pp's have said - try to find another OT. The one you saw was wrong! There is much to be gained from OT addressing sensory issues with young children.

We tried pretty much everything that everyone above has suggested. Nothing worked for dd. We had been on a waiting list for a sleep study forever (it seemed). The day they finally called to schedule her study (also the night before my birthday!) dd slept 14 hours. It truly is a miracle. I credit her sudden switch to sleeping through the night and taking long naps as a miracle from God. I pray that you get your own miracle and that your dd begins sleeping. Sleep deprivation is the worst form of torture.
post #12 of 17
Thread Starter 
just wanted to say thanks to all who responded. your words of advice and encouragement really mean a great deal... at times, i just feel so alone in this struggle. i know sleep is an issue for all moms, but as much as i think my friends think they understand, i don't think they know what this type of sleep difficulty feels like to a mom. i feel like i'm failing her, like i'm doing something absolutely wrong. i swear, she never displays signs of fatigue (she literally talks until sometimes seconds before she falls off to sleep), so it's like a crapshoot to decide when she should go to sleep. i've tried almost all th interventions (blackout shades, noise mufflers, routine, activity during the day, etc.), so to still have it take so long just feels like failure. and from a selfish perspective, it's sheer torture to never ever know when she'll finally go to sleep, or how long she'll sleep. there are so many people around me who act like i must just be being overly sensitive, or just not doing it correctly (stepmother, etc.) - so it's essential to have people around who remind me that this is just sometimes how it goes... and i'm sorry anyone else has to go through this. thank goodness there are forums like this!
if gingerstar sees this, are you willing to talk about your oldest child's diagnosis? i guess that's my little secret fear - how do if i just need to hold on, breathe deeply, and patiently wait for this to change VS. seeing if this in indicative of anything else? should i be getting a sleep study done, etc? i'm generally not an overkill type of mom, but as a single first-time mom, it's a real challenge sometimes to keep it all in perspective.
i agree that OT could be helpful right now. i'm going to try to find another OT, though i the only other reputable place here isn't covered by my insurance. for those of you who recommended doing sensory activities with her (dd) during the day, are there any you specifically recommend? we try to get out and run, play in the sand, etc., but usually that seems to make no difference. there are lots of books about sensory stuff, but it's tough to know where to start.
also, (sorry, this is like a whole new thread in and of itself), are your kids in daycare?? i've been scraping by off my savings, living with parents (rough), etc., but i will have to go back to work soon, and it breaks my heart to think of her in daycare. i am unable to imagine how anyone else could get her to sleep, and if they did (after probably trying for a long time), she'll probably sleep for 30 minutes. my parents aren't people who have the patience to deal with her, so that's not an option. i feel almost sick to my stomach when i think about putting her in a situation where she can't get what she needs, and i would love to hear about other people's experiences in this regard.
thanks again for listening to this ridiculously long thread!!
post #13 of 17
Originally Posted by nayma View Post
if gingerstar sees this, are you willing to talk about your oldest child's diagnosis? i guess that's my little secret fear - how do if i just need to hold on, breathe deeply, and patiently wait for this to change VS. seeing if this in indicative of anything else? should i be getting a sleep study done, etc? i'm generally not an overkill type of mom, but as a single first-time mom, it's a real challenge sometimes to keep it all in perspective.

My dd has NonVerbal Learning Disorder - wiki's isn't the best explanation, but it works. This is better, actually...
But I think, yes, take a deep breath, see if any other suggestions help, and don't anticipate that this means anything awful. I would just say watch your DD and be open-minded to who she is and what she needs (seems like you are doing a great job there) and you will be able to accept a dx if you do wind up with one.
This board is a great place to gain support from people who *get it*, as opposed to all those who say unhelpful things. We have all been there, I think.
Trust yourself, mama. You know her better than anyone.
post #14 of 17
My DS has never been in daycare, and like you with your DD, I think it would be difficult for him (and those trying to care for him). Not sure if you could afford it, but would you be able to use a nanny if you could go back to work?? Perhaps a small home-based daycare instead of a large institutional one might work better?

Like you, I tried all the sleeping stuff that I listed above. Some of that helped sometimes, but not always. And he still was an atrocious sleeper. And we did get "blamed", mostly by family, sometimes by the EI therapist. It's frustrating. Just know that (1) it's not your fault and (2) you are dealing with it the best you can. I hope you can try something like melatonin or calms forte and have it help.

Sorry your parents aren't any help.
post #15 of 17
Thread Starter 
thanks, gingerstar. i definitely will continue to just try to do what feels best for her, and try not to over-think along the way . i've always felt in my gut that there's something just a bit different about her, but i can't say i know what it is...
we just returned from a trip out of town, and her sleep was so cracky! she was so tired, she'd just stand up in bed and start talking during the night. or she'd sleep at naptime for five or six minutes, then startle really hard and never be able to get back to sleep. ay yay yay.
luckily she's so, so, so funny, because the laughter is what keeps me going.
hope you all had great holidays!!
post #16 of 17
My son (ASD, epileptic, suspected SPD, etc.--wiring is completely "off") slept no more than 6-7/hours of every 24 until a year ago this month. He was 3-1/2yo. Even when he did sleep, it was fitful, disrupted, etc. We were ALL a mess.

Just as a means of helping his development overall, we started giving him fish oil. One teaspoon/day of Nordic Naturals liquid Complete Omega 3-6-9.

Within a week, he slept 9-10 hours/night AND ADDED A 1-3 HOUR NAP.

He has a mild immune deficiency and of course, I thought we were in for it--he was clearly fighting something off. But it never went away.

It's been a year now and to this day if we miss 2 or more days of his fish oil, it's immediately noticeable in his sleep. It starts with bedtime moving from 8:30pm to 11pm. I then turn to dh (who is on duty in the mornings) and ask him if ds has been getting his fish oil. :

Whatever it was about his neurology that was not functioning was clearly remedied by the fish oil. I don't know if it contributed to anything else, but I. do. not. care. I need sleep. I'm happy, he's happy, dh is happy. S'all gooood.
post #17 of 17
Originally Posted by mavery View Post
Can anyone who uses melatonin point out some good info on using it with young children? (Like why some children might need it, what the potential side effects are.
I don't have personal experience with melatonin, but I do happen to know that one of the side effects is easy bruising and bleeding. It might not matter as much for a normally clotting kid, but I know of a child with hemophilia who was really badly affected by that side effect.

Again, not sure how it would play out in a clotting kid. Probably just something to be aware of.
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