We are about to lose it! DD has SID and she doesn't sleep well. She will get up and want to eat and/or stay up. If I take her to bed with me she tosses and turns and more all night. If I put her to bed she screams and wakes the other 2 and gets all worked up that it takes so much longer to get her down.

If she sputters/whines at night I don't get her, but if she stands and cries and screams I go to her because she wakes the others and gets herself worked up.

I am currently reading Out of Sinc Child, but haven't gotten to a part about this. I am at my whits end!!!! She will do this for 4-5 nights, than have a week or 2 where she is OK. She will wake, but not for any length of time during these 2 weeks.

I am contemplating calling the doctor and asking for a sleep study for her. Don't know if she'll even cooperate.

We have tried homeopathic stuff like Calm Forte, we use a scent ball with lavendar oil. We listen to calming music, we even STILL wrap her. I don't get it. I just don't get it...........am in desperate need of help.

I don't get sleep. My husband helps at times, but he works. I yell and scream and lose it my others because I am tired and have headaches because of lack of sleep.

I don't know where to turn...
Karen

Mom to 5 Beauties
Allison,7,Grace,3
Margaret, Melissa, Michelle (6/20/02--34weeks 1day)

Karen

Mom to 5 Beauties
Allison,10,Grace,7
Margaret, Melissa, Michelle (6/20/02--34weeks 1day)

Showing other MOMS how to stay home, BE HEALTHIER and earn extra income!
www.ImagineBALANCE.com/TakeChargeNow

Dear Karen,

All I have for now is hugs and prayers for you! I completely understand what you are going through and it just sucks. I don't have any great suggestions for you as we are struggling with the same problem with one of our triplets. Unfortunately, over time, she has conditioned the other two to wake up every night as well.

My trips just turned 3 and you know what? As a trio, they have NEVER slept through the night. I completely understand the frustration and exhaustion. I see you have two other children, I have three other children in addition to the trips so I know what you are going through.

I do not think my Mackenzie's sleep issues are a result of anything we may or may not have done. I just think some kids are like this. My Mackenzie also has Sensory Integration Disorder and I have read that children with this disorder frequently have trouble sleeping. It has gotten to the point where I too want to request a sleep study. From the research I have checked so far they do sedate them if they can't fall asleep on their own. We went through an awful stretch the last three months where she was having night terrors ~ OMG it was awful. Now all of a sudden, just the last few weeks, she is sleeping better. So now I am back to not knowing what to do AGAIN.

For us, Mackenzie sleeps better when she sleeps with me. Not perfect but it's better than no sleep. She will go to bed fine at 8:30 in her bed but by 10:00 she is screaming and comes down here to sleep with me and is fine. But like I said, prior to these past few weeks, she had been having an awful time. I have always been reluctant to "ignore" her or let her cry it out because something "real" does seem to be wrong I just haven't figured out what yet.

Hugs to you ~ this is so hard!

Cindy
Happy & Proud Mommy to:
Shannon Alexis 12
Trevor Jack 10
Sierra Brooke 7
Madison Rose 5
Mackenzie Lynn 5
Max Christopher 5

karen- call the doc and ask for the study or whatever he can do to help you. this sounds incredibly stressful and if soundslike it is negatively affecting your parenting. maybe there is some mild med that you can use for her just to let her relax enough to go back to sleep if she wakes. call the doc- at least you will know if ther is anything to help you. terri

terri
mom to ian,wes,amelia (09/02)
leslie 12 years
micaela 9 years

Hi Karen,

Just wondering if your daughter is seeing an Occupational Therapist? An OT (experienced in SID) may have some good practical suggestions on how to calm your daughter so that she can sleep through the night (and hopefully you too!)

Laurie

BBB(2 identical,1 fraternal) EDD: 3/27/04

http://hometown.aol.com/belize12/myhomepage/laqualia.html

Laurie

BBB
2/20/04
34.6 weeks

Thank you for your suggestions and support. An OT was coming here when she was first diagnosed. SID is not a 'real' disease to the ins. companies unfortunately. I am going to call on Monday to see about more help.

I talked to the doctor the last time this happened for a long stretch (maybe 2 months ago) and she wouldn't give her meds. I was po'ed. I almost switched doctors. We have tried Benadryl too, that doesn't always work either.

There just HAS to be something.....last night she was up for alot of it, sputtering and whining. I didn't get up. I took a sleeping pill and woke to her, but wasn't motivated enough to get up and she did fine, but she never screamed and got herself worked up.

I thought maybe she thrashes so bad she hits the side of the crib. So we put a twin mattress on the floor and put up in the corner of the room and put a dresser on the long side and packnplay on the short side to keep her in. There was a small gap and she got out. So, that didn't work. We wanted to do this first before we made anything.

Karen

Mom to 5 Beauties
Allison,7,Grace,3
Margaret, Melissa, Michelle (6/20/02--34weeks 1day)

Karen

Mom to 5 Beauties
Allison,10,Grace,7
Margaret, Melissa, Michelle (6/20/02--34weeks 1day)

Showing other MOMS how to stay home, BE HEALTHIER and earn extra income!
www.ImagineBALANCE.com/TakeChargeNow

Karen

Have you tried an appeal with your insurance company re-the OT ? Our former insurance company wouldn't pay for OT and PT at the same time for one of my boys (they called it duplication of services }> ). He really needed both- when he was in the hospital he got daily OT and PT for 6 months. I explained that to them and provided lots of information and research, thanks to out OT and we finally won the appeal after 6 months. It was worth the battle though. I understand the EXTREME frustration of kids w/ SID disorders and the severe sleep deprivation it can cause . My boys have been in weekly OT for many years, and our new insurance covers it 100 %. If we hadn't already had $300,000 in other medical expenses, I would have paid for the OT myself, at least for a while to get my boys some help. If you can't get anywhere with your insurance company, it may be worth it to pay for treatments yourself for a while.

Has your OT diagnosed your daughter with anything else besides SID ? Maybe fine motor problems, or any of the other things that often accompany SID ? That might help w/ your insurance company. There is a Scottish Rite (I think that's what it is called ?) Foundation that one of our OT's told us about that helps pay for speech therapies and I think OT also. I can find more info if you are interested.
A good friend of mine with a son w/ SID and severe sleep problems (who also has a masters in counseling, and is very knowledgable about childhood development) has read every book she could get her hands on about sleep disorders. She and I have had many discussions about this issue, and have both only received relief from OT for our kids.

One of my boys had a sleep study done, because he had pretty severe apnea as a baby and snored really loudly and had a lot of sinus problems and always woke up tired. I could be wrong, but I think those are the reasons sleep studies are done, not for SID related sleep disorders. There may be a totally different type of study available and I just haven't heard of it though. I would encourage you to finish The Out of Sync Child and another book by the same author The Out of Sync Child has Fun. Here's a link to a good SID web site also. The books have links in the back to sites with good info also. http://www.sensoryresources.com/
There is info on this site right now about seminars available. They are REALLY helpful. If there is one near you, I would highly recommend it.

I hope you find some relief soon, severe and chronic sleep deprivation is awful !!! very few people really understand that, and will say things like " I know, I was up for 2 nights in a row with my sick kid" }> }> they really don't have a clue what you are going through.

Lorraine

Lorraine

Reach for the heart of God and not just His hands.
Organ donation saves lives!
Life happens when love is given.


http://www.caringbridge.org/visit/bradenwild

My nephew, age 12,who has autism, has been driving my brother and his wife wild the past week; up all night, sleeping all day. They are at their wits' end and Benadryl hasn't helped. I wonder if he could have SI as well as autism? I'm going to look up that book recommendation in amazon. Thank you.

Mom of a princess, age six, and two princes, age 4

Since she is 18 months, you should get therapy through the early intervention program in your area, and there is little if no co-ay for it. Call your Board of Ed to get the number for EI in your area. Also, I would try the sleep study. Dovi has SID among other things, and he also ahs some sleep disruption, which he has gotten better about as he's gotten older.
- Sara, mom to Dovi (age 6, special needs), and Elisha, Shana, and Jakie (born 8/12/02 @ 29w6d)

- Sara, mom to Dovi (age 10, special needs), and Elisha, Shana, and Jakie (born 8/12/02 @ 29w6d)they're 6!!

http://dovislife.blogspot.com

Hugs!

One of my survivors has SID also. We get a LOT of OT help and we recently started brushing and things have calmed down a LOT. Are you getting county early intervention services? Those are usually free or very low cost and don't go through your insurance. They should be able to provide an OT at least to consult with your situation.

My neighbor has a former 28 wkr and has severe SID and has serious sleeping issues. At 5yo he was recently diagnosed with a high functioning form of austism (aspergers).

I wish I could help more.

Karen,
Can't really add anything new, just wanted to endorse the advise that Wilds gave you (which was right on the money, as usual). An OT experienced in SID makes a huge difference and reading both of the Out-Of-Snyc Child books will help you understand and implement the OT's suggestions. I have two children with SID and autism. One sleeps through the night fairly well now but had severe night terrors when she was around 1 1/2. The other one wakes up multiple times during the night for several weeks, and then sleeps OK for a week or two. The brushing, compressions, etc. that the OT recommended do seem to help him sleep better, but we're still not out of the land of sleep deprivation yet. I know it seems never-ending but from what I've been able to dig up from other moms of kids w/SID, it does eventually get better. Good luck and hang in there!

JUST AN UPDATE:
OK, so it took me a few days. My OT thinks it is night terrors. I don't. She recognizes me and can be calmed but just doens't want to be sleeping. Also, it doesn't happen every night and not at/around the same time

My Ped. said she would check into a sleep study. So, progress.

I don't know if this is good or not, but we have put a pillow in her bed and it has seemed to help. My ped. said it should be toddler pillow. i don't know what one is or where to get them. aside from that, is there a REAL possibility of a 18 month old to suffocate? (does this sound like an idiot question?-I hope not) Anyway, it could be a coincidence that she is sleeping from being up so many nights in a row. Also, if she doensn't actually wake, she doesn't sleep in. She is up by 4:30am. So she either is up all night or up REALLY early and cranky either way. Either way, this is just dreadful!

Karen

Mom to 5 Beauties
Allison,7,Grace,3
Margaret, Melissa, Michelle (6/20/02--34weeks 1day)

Karen

Mom to 5 Beauties
Allison,10,Grace,7
Margaret, Melissa, Michelle (6/20/02--34weeks 1day)

Showing other MOMS how to stay home, BE HEALTHIER and earn extra income!
www.ImagineBALANCE.com/TakeChargeNow

Just wondering if you've tried a white noise machine instead of music? This worked wonders for us, two of our boys have SID and we have used the white noise machine for years. Also, make sure there isn't too much light or not enough light. Your OT could also offer some suggestions. Are you doing the brushing/compression program? If so, try doing it right before bedtime. When she's a little older, a weighted blanket might be worth the investment.

Take care,
Kristin
Mom to BBB (9) & G (7)

Take care,
Kristin
Mom to Hayden, Evan, Conner-13 and Kelsey-11
www.cure4conner.org

Karen this is a long shot. Sometimes kids into a routine or rut from a routine or break in the routine. I have one child that would get up like this after being sick for example. Probably out of habit. Our Pedi reccommended giving a dose of benedryl since it has a an antihistime in it. IT makes them sleepy and if the sleep through the night it could be a habit at this point. Try it for 2-3 nights. See if that helps. It certianly will not hurt her. It did work for another mulitple mom friend of mine as well. Poor little thing sounds so tired and this must be difficult for all of you. I hope you find some answers. A small night light also helped out Hunter from waking up.

Danielle
Easton, Blake, Hunter
1-24-99

Danielle
Easton, Blake & Hunter
1-24-99

Thanks for all of your suggestions. Maggie has slept the last 5 nights. We put a pillow in her bed and put a bumper pad in like normal and tied another to the top of the crib so it is one total bumper. I don't plan on this lasting too long....it normally ends soon.

We have a nightlight and an aeromaball with lavender oil in it. We have tried Benadryl (doesn't work for her) and calm forte as well as Uncle Val (valerian root). So we have tried the homeopathic things and over the counter. She has to come up with something else.

She made a comment about going to the natural store for Melatonin. I haven't gone yet until I hear back from her. May try that next. Just waiting. Last night one of the other triplets was up 5 times. Looking for her nuk. I think she was spooked to. Who the hell knows. Just tired of being tired!!!!

They say it gets easier.....when? All I can think about is that potty training is coming up.....!

Karen

Mom to 5 Beauties
Allison,7,Grace,3
Margaret, Melissa, Michelle (6/20/02--34weeks 1day)

Karen

Mom to 5 Beauties
Allison,10,Grace,7
Margaret, Melissa, Michelle (6/20/02--34weeks 1day)

Showing other MOMS how to stay home, BE HEALTHIER and earn extra income!
www.ImagineBALANCE.com/TakeChargeNow

I wouldn't say it gets easier, just a different kind of challenge .
Have you had any luck with EI or other means for getting OT ? Hope you all get some sleep, it is one of the things I definately do not take for granted ! A good nights sleep is like gold to me.

Lorraine

Lorraine

Reach for the heart of God and not just His hands.
Organ donation saves lives!
Life happens when love is given.


http://www.caringbridge.org/visit/bradenwild

So, far not much help. The OT thought it was night terrors and said she'd think about it and call me back. no word. I got the doctor to call a sleep clinic and have her evaluated. so that's good

So, what we have done is put a bumper pad around the top part of the rail so her crib is one big bumper pad. We also put a pillow in there. She seems to be better, but this is probably just one of her cycles. My ped. told me to get a toddler pillow, I asked where to get one and she couldn't tell me. I have looked, but have never bought one in my 7+ years as a mother. Have no idea what to look for. Unsure if there is a real concern with an 18mo and a real pillow. She has had it for 1 week and does fine. Any thoughts on this?

thanks for your help
Karen

Mom to 5 Beauties
Allison,7,Grace,3
Margaret, Melissa, Michelle (6/20/02--34weeks 1day)

Karen

Mom to 5 Beauties
Allison,10,Grace,7
Margaret, Melissa, Michelle (6/20/02--34weeks 1day)

Showing other MOMS how to stay home, BE HEALTHIER and earn extra income!
www.ImagineBALANCE.com/TakeChargeNow

Hi Karen,

I have not seen "toddler pillows" like she is describing, but I think you could just use one of those little square decorative pillows in her bed. When we started using pillows last year, that's what we did and they work great. They are not as large and fluffy as a regular bed pillow, which I believe is the suffocation concern there. You can get a pre-filled square pillow form at a fabric store and just put it into a pillow case, or someone you know can sew a cover for it. Our nanny made the boys Bob the Builder pillows and blankets, and I just put a pillow case over them to keep them cleaner. Good idea on stacking up the bumber pads - maybe that will help her to not bump into the sides as much. Plus, maybe it makes her feel more closed-in and confined in her bed, and maybe that makes her more calm. Good luck and I hope her new trend is permanent!

Jennifer P.
Proud mom of first-round IVF miracles!
Nicholas, Victor, & Jacob
(12/15/00 @ 29 wks)

the trend broke last night. I knew it wouldn't last. She was up 3 times by midnight she was screaming bloody murder. Brought her to bed and she was soooo very restless. I would bundt her and massage her to try to calm her down. It eventually worked and she was "sleeping" by 2:30. She thrashed alot for the rest of the night. should have gotten up and put her in her bed...too tired and now I am even MORE tired.

Oh well! Off to coffee and some extra vitamins to get me thru the day!
Karen

Mom to 5 Beauties
Allison,7,Grace,3
Margaret, Melissa, Michelle (6/20/02--34weeks 1day)

Karen

Mom to 5 Beauties
Allison,10,Grace,7
Margaret, Melissa, Michelle (6/20/02--34weeks 1day)

Showing other MOMS how to stay home, BE HEALTHIER and earn extra income!
www.ImagineBALANCE.com/TakeChargeNow

Could she be ill, by any chance? An ear infection or a toothache maybe?

Mom of a princess, age six, and two princes, age 4

Hi Karen,
Sorry to hear that Maggie is still having problems sleeping. When is your sleep study? Is she still taking her naps during the day? I remember when Justin was trying to get rid of his naps and wouldn't take them...he was overly tired. He would do the same thing that you described. The drs also mentioned to me that it might be night terrors. One thing they told me to do is keep track of the episodes as to what time of night they are happening. This will help the drs determine what is going on. I'm not sure if it really was, but he eventually just stopped. I think it was more that he was overly tired and trying to get use to a new schedule. Sorry I can't help, but just know that I'm here for you.

Angel (mom to Justin, Andrew, Brandon 9 yrs, Angie 15 yrs)