Major sleep problems with my SPD daughter

Jolynn - posted on 11/30/2011 ( 18 moms have responded )

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Are we the only ones dealing with sleep issues with our 3 year old daughter with SPD. She has not slept well since day 1. As an infant we were told she had acid reflux and if we didn't sleep with her on our chest on the couch everynight then we had an acid reflux wedge pillow that we would strap her into, she also had severe vomiting and this helped keep her from aspirating. This was long before we knew anything about SPD. She now sleeps in a toddler bed beside our bed in our room. We told her behavioral therapist that we believe she sleeps for about 2 hours at a time and then we hear her thrashing around and getting her sippy cup and pacifiers. Sometimes she will actually wake up screaming or get out of bed and need to use the bathroom a couple of times a night. Well we just got a HUGE surprise this past week when we started recording her sleeping so we would have "proof" of her restlessness.

We have a camera that will turn on and record whenever it detects movement. The camera is only on her in her bed. During an 8 hour sleep cycle for the past 4 nights we have found the longest length of time that she goes without moving to be 25 minutes!! I was shocked to see the video and see how much she tosses and turned and sits up and gets her juice off the nightstand and then puts it back and flings her arms and legs around. It happens ALL night! She can't possible be getting any deep sleep. Sometimes it looks like she might even be having a mild seizure. Now that we have this information I'm not sure where to go next. A sleep center for kids? A behaviorist? A neurologist? Have any of you had your SPD kids evaluated for sleep problems?

Is this common for SPD kids?

Any help would be appreciated.
Thanks!

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Heather - posted on 01/23/2012

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Way simplistic answer (due to time constraints, sorry), but I recommend weighted blankets frequently for children with SPD who struggle w/sleep in the ways you've described. (I'm an OT in a peds clinic and work almost exclusively w/kids who have SPD).

Jennifer - posted on 01/08/2012

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My son is/was the same way. We call him solar powered because if there is even the least bit of light, at bedtime or in the morning, he is up and running. Then there's the restlessness and the waking up screaming but unable to wake enough to communicate what is wrong! I can't stand sleeping in the same room as him as I'm a light sleeper! We were at our WITS end and all over tired when he started a theraputic listening program. That has helped but what we call our miracle is melatonin. If we travel I carry it in my purse!!! We had used it with him when he was two and on an allergy medicine that had the side effect of not sleeping. It worked then but the allergy med did not. When we stopped the allergy med we also stopped the melatonin. We wish we'd made the connection sooner!!! I also havn't been able to find any research comfirming a connection between SPD and sleep problems, but it does seem to be commen enough that most OT's (my son's inccluded) claim that it IS commen.

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Joni - posted on 08/25/2012

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Oh, my daughter responds well to both benedryl and melatonin... but my concern is that maybe she will not be able to sleep WITHOUT it, if I give it to her too much, you know? I don't know if that's a valid concern, I just worry about it.

Ammiee - posted on 08/25/2012

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My five year old only sleeps four hours period, so I am sort of relate. He isn't restless when he sleeps, he just only seems to be able to sleep between 11pm and 3 am. I feel fortunate after reading about your daughter that at least it is four hours of peaceful sleep.



I am going to try the weighted blanket idea.



Melatonin or benydryl was suggested by our pedi. You may want to ask your OT or pedi if that would help your daughter have a more peaceful nights rest.

Patricia - posted on 08/22/2012

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Maybe I should try the weighted blanket though my Daughter cannot stand to be touched. Wondering if she will not take to it.

Joni - posted on 08/22/2012

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My daughter has sleep issues too - I don't think she's slept through the night since she was born and she's TEN now. But the good news is, she has gotten better at sleeping over time. She also needs to touch someone when she's sleeping, and many times climbs in bed with her brothers or me (which isn't that great). I'm about to try the weighted blanket idea - I can't believe I never thought of that before, but then, I've only just realized she is SPD in the past week and it's been a flurry. Sigh. It's a journey.

Jones

Patricia - posted on 08/15/2012

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I would say exhaust every avenue to make sure it is nothing else wrong besides the spd. My Daughter is 10 and she has never been a good sleeper. She also was a preemie with acid reflux and allergies and Lactose Intolerant. As soon as I would feed her it would come back up. I finally had to pull her into bed with me too. I finally got her out of bed this past year, but now we are in a stage of staying up til 4 am in the morning and then sleeping all day- ugh. Luckily I home school. I have never had her evaluated. I just assume it is because of her giftedness and also spd.

Know you are not alone. It is frustrating, but hang in there. Hopefully she will eventually get thru this stage and sleep more. I say no drinks at night if she has the acid reflux and juice is the worse for that. Water only.

Jennifer - posted on 05/07/2012

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I just made one of the weighted blankets with the poly beads quilted into the interior. It was kind of like an "off" switch for my daughter. She loves it and snuggles down. It has cut down on the tossing some.

Sara - posted on 03/27/2012

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My son is 14 months old and was just diagnosed with SPD. He does NOT sleep well at all...awake every 45mins at a minimum. He tosses and turns and never seems to be able to get comfortable...he sleeps better with us again I think because of the pressure. He has bags under his eyes every day and is cranky because he's so exhausted...we have a few month wait untl we start with his OT so we're really hoping they can help! They think it's likely because he was born 2 months premature. We already have him on a gluten free diet and they are soon going to start him on meds for acid reflux....

Jolynn - posted on 01/25/2012

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Thanks so much. We just received our weighted blanket and it does seem to help a little. We also just got an EEG done to check for seizures so we are waiting for those results as well. Some of it could also be from her acid reflux and we just got her to start taking her medication for that again. So I'm in a wait and see period!

Heather - posted on 01/25/2012

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There are different styles of weighted blankets. If a child is sensitive to tactile/touch input, the style of blanket w/the metal plate weights in it may be bothersome to the skin. Also, some catalog produced styles are very lumpy/hard because they are themselves made of heavy fabric. Look for a blanket that is filled with small plastic beads that are quilted through the interior. Not sure where you live, but this is where I usually send my clients for them:

http://www.w8tedblankets.com/

Another option might be buying him a neoprene pressure vest to wear at bedtime.

Good luck!

Audenough - posted on 01/23/2012

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We tried the weighted blanket with no luck, but I know others swear by them. I like the feel of it but he doesn't.

Audenough - posted on 01/10/2012

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My son was just like your daughter, restless, waking or half waking 10-20 times per night at age 3. We tried to have a sleep study and he couldn't sleep with all the extra input of a new place so after 3 hours of not sleeping with all those electrodes on we went home. The neurologist told me it was because I still nursed him at night. After years of struggle we got our SPD diagnosis but he still didn't sleep. In the end it took all of the following (none of which can be omitted for him to sleep) A gluten and dairy free diet, Occupational Therapy with an SPD certified therapist, a neurological medication called neurontin, an herbal medicine called Cortisol Manager, and a home OT program. We now are struggling with nasal allergies and the sleep is harder again. I did not want to medicate him, I did not want to deal with the diet restrictions (which actually encompass several other foods also, but we both needed sleep. He is so different with sleep, so much happier, so much healtheir. I still worry about giving him meds at such a young age, but never having deep sleep seemed more destructive in the end. The neurontin is supposed to deepen the sleep cycles. The cortisol manager lowers his cortisol levels from the stress of all the sensory assault of daily life for him and the diet, or how the diet helped. Even on medication he was only getting 2-4 hours at a time for part of the night. when we finally did the diet he started to sleep so so much better. On the nights when we can do all that and keep his nasal allergies at bay the child who was up 10-20 times per night sleeps 11 with only 1-2 wake ups. I don't know what the answers are for your daugther, I know each child is different, but I hope you find the help you need very soon.

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I thought I would add this...My daughter has been going to a sleep clinc for almost a yr now. We have been trying to find a dr who knows anything about SPD and/or interesting in study how our daughters brain works while sleeping (or lack of sleeping). We went to an ENT this last week who suggested going to a neurologist to have some test ran and see. Hopefully it will help find answers for all of us who have children who can't sleep. We go to Cincinnati Childrens and hopefully this will be the begining to some research and a little more insight into the world of SPD.

Ashley - posted on 01/03/2012

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My son has never slept well. He wakes up at least 3-5 times a night 3/4 of the nights of the week still and he is 5. I had the hardest time getting him into his own bed - he likes to sleep touching someone. He likes the heat and pressure I think. I think it is very common - my friends with kids like him AND autistic kids (who usually have some overlap in symptoms) all say the same thing. One thing I have found that helps is a heavy blanket - you can actually get weighted blankets. Also, we get pajamas that are tight and thin - so he gets some pressure, but the material doesn't bother him. I swear it helps a lot. http://www.hannaandersson.com/style.asp?... These are the ones we particularly like. I had cancer for the first 3 years of his life and this was the absolute hardest thing for us. I needed my rest, he couldn't sleep. He started out in his own bed, but about 10 months he could no longer sleep alone and my husband wouldn't hear him to help, so he started sleeping with him. Sometimes he slept in our bed, but he refused that after a while and my husband actually slept on the living room floor with him for like 8 months. By the time he was 2 I had him going in his own bed some, but he always came to our bed eventually and I was too tired to fight it. My son tosses and turns almost like you say, sometimes he punches, sometimes he kicks - he flips and flops head one way then the other. He talks in his sleep, has terrible nightmares, and used to have night terrors where it was almost like he was sleep "moving" - he didn't walk but had a blank face and stared right through us while screaming and screaming. Nothing has helped us but time, patience, and trying new things. Some kids need white noise, some need pressure, some need..... I don't know how to find the magic recipe - I am still searching for it myself - but it has gotten better. At least he sleeps now.

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OMG! I can;t believe everything you just wrote! We just had my daughter go do a sleep study because I can't stand the fact that she is up so much at night and how sad and tired she looks in the mornings. It must be common. They cant tell me why Destini is up at night and over course the one night she sleeps all night is the night they did the sleep study! I really need to try something new. I wish I could find someone who SPD is their main focus in the career!

Jami - posted on 12/02/2011

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oh wow! This sounds EXACTLY like my son! He is now 4.5 and does much better sleeping now. But we went through the exact some thing. I felt bad for doing it but the thing that seemed to help us the most has taking away his cup at night! It was almost a distraction to him. He has a rare kidney problem which requires him to take Duiril which is basically a liquid from of a water pill which causes you be veery thristy. So we thought he really needed the drink through out the night. Turns out once we told him he didn't need it and it would no longer be available to him. He fairly quicky forgot all about it. And started waking up alot less times. Also I am sure you have been told this many of times before but routine is key with SPD so especially since he started school he has a set bedtime which he now does very well with every night! Good luck to you! let me know if I can do anthing else. hope this helps some.

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