Posts Tagged ‘Sleep’

Here is a single 36 hr period of wakefulness and sleep that Luke experiences that I recorded to show Lukes sleep doctors, sleep neurologist and clinical psych on 4/15.

Wake 8am

Nap 12:45-2:45pm > 2 HOUR NAP

Bed 8pm

Wake 10:30pm

Wake 10:42pm

Wake 11:25pm

Wake 12:05am

Wake 12:11am

Wake 12:20am

Wake 1:01am > Awake for 5 HOURS

Back asleep 6:16am

Wake 7:13am

Wake 8:10am

Nap 1:02pm

Wake 2:10pm > Put back to sleep

Wake 3:15pm > 2 HOUR NAP

Bed 8pm

Kind of ridiculous right? That night time sleep would be Luke in his toddler bed that is next to my side of the bed so I can jump up and get him to lie back down quickly. Most of those wakings the first half of the night are parasomnias – “sleep walking”. The 1am waking was full on wakefulness. Thats a pretty typical night though. I just don’t sleep since he doesn’t sleep.

(This is our little man.. not being so manly with mamas purse in the ACH waiting room)

The psychologist had said in our first meeting that she thought his sleep problems were behavioral. *insert sarcastic laugh* Yeah. Right. We may have done a lot of things wrong, like nurse to sleep, nurse at each waking as a desperate attempt to get him back to sleep, co-sleep, couch sleep, no routine.. *sigh* When we did implement those thigns and make ALL the corrections that she wanted to.. it STILL didnt matter. CLEARLY there is a medical problem. After a month we saw her again and she agreed that it was infact, -not- behavioral problems interrupting his sleep.

The .75mg of Klonopin wasnt even touching his parasomnia. We did see an uptick in the wakings when we started the med but it leveled back out and we now see that there is zero change in his sleep. Although, it is reducing his anxiety in excellent ways! He can make eye contact with people he doesnt know and even give them high fives sometimes! I almost think we need to stay on some kind of anxiety med so that he can develop faster. At therapy he is making HUGE strides since we started Klonopin.

The regular sleep doctor, Dr. Guillory, just said to finally get off melatonin since we dont even see any benefit from even a large dose, extended release, and the expensive name brand stuff. We have like, 5 kinds of melatonin stuffed in Lukes medicine cabinet. And isnt that sad that Luke has his own med cabinet? And, its stocked FULL of his meds.

(This is Nick and Luke listening to the Toy Story reader on the shiny new iPad)

The sleep neuro said we need to up the dosage of klonpin to 1.5mg over the next 10 days. Dr. Greible said if we don’t see a change then we need to take the next 6 months to wean off that med. We will have to find something else to try obviously. She didnt suggest what we might try. Ive got that feeling that Klonopin isnt going to be the magic drug though. Sadly, Dr. Sharp, the neuro, believed that his heavy sleep that morning after his most recent seizure what induced by the increase of klonopin. Im thinking it wasnt. Lets just call it mommys intuition.

One other point to bring up from that sleep clinic appt was that the Clinical Psych does want us to have Luke evaluated for an Autism Spectrum Disorder (ASD) and Sensory Processing Disorder (SPD). This was not at all surprising to us. Nick had felt like something along these lines were going on since around 6 months old.

I read several books this past summer while I was sleeping on his bedroom floor. Many were sleep training books but I did read a few books on quirky kids and ASD/SPD type stuff. I decided to stop reading them because I really felt like it described Luke but that I was probably reading too much into it. We always had something like this in the back of our minds. Then, we brought up some odd behaviors Luke exhibits and she started asking very pointed questions which we knew what she was getting at.

She said if Luke does have ASD he is VERY high functioning of course. SPD/ASD do go hand in hand sometimes but if hes not ASD then hes probably SPD.

I’m totally ok with this. It would make me feel better to know that THIS is how Luke is hardwired and my parenting style didnt somehow ‘do’ this to him. I just feel guilt sometimes. Like, did something in my pregnancy cause his seizures in utero? Of course thats not the case. Did our (over)reaction to how he was diagnosed with epilepsy cause some of his anxiety and neediness? Probably not.

So, this is where we are now. It will be months probably before we can get into the Dennis Developmental Clinic. They want us to see someone there because they are the best in Arkansas. We dont want him diagnosed with something he doesnt have. And if there needs to be a diagnosis made, we want it to be most accurate and made by the best people. It could be the end of the summer.

I plan on mailing the application Monday first thing. I dont want to sit on this one.


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Good news and better news here finally!!

Good news:

Luke was just drunk from the 4mL of tripeltal we gave him last night. He got 3mL which is is regular dose. After his seizure, the neuro on call had us give 1 more mL for security. We gave him another 4mL this morning at med time. Apparently, his stumbling, staggering, buckling was my boy being drunk..

Dr. Sharp wants us to increase tripeltal to only 3.5mL right now to ensure seizure control.


Dr. Sharp doesnt think this massive sleep fest was a result of the seizure. Hmm. Interesting, Go on… Right?! He thinks its the larger dose of klonapin. HOLY COW! He thinks that .75mg will be the magic number for Lukes sleep.

To this I want to say..

IN YO’ FACE.. all you doctors who discounted me when I knew there was a REAL sleep problem and sought out your help. You told me to put him in his crib to “CRY IT OUT” and told me it was all a “behavioral issue” to deal with at home. How dare you assume every child is the same and needs “tough love” or whatever it is you want to call what you told us was the only thing that would solve his *behavior*. How dare you look at me and how young I am/was and tell me how I need to parent which was not based on a thing you heard me say had already been done or had been tried. Shame on you.

I want this to be encouragement to ALL moms and dads out there. If you think there is an issue, a problem, a curiosity, anything.. find SOMEONE who will listen. Research the problem. Learn about what the options are. Know what you are talking about. Find someone who WILL LISTEN to yo!!. That is NOT doctor shopping. Persist until you get what you need for your child. I never was mean or hateful though and I learned that sometimes being extra nice is more powerful than being mean and hateful.

*doing my happy dance*

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The weaning process

Tuesday marks another mL less that we give Luke of his anti-convulsant. We started out at 8mL twice a day, then 7mL and now we’re currently on 6mL. Tomorrow we drop to 5mL. 

Wow. It’s going by fast. 

In a previous post, I mentioned that I would, without a doubt, be doing the 4 month wean instead of the 2 months wean that the neurologist suggested. I was overwrought with emotion and wasn’t thinking clearly at the time. After much thought and prayer, I decided on my own that we would do the shorter weaning than the longer. 

Here soon dance starts again and Luke won’t be in my care 24/7. If he’s going to have a recurrent seizure I would rather it be now, with me, than with Nick or my mom or whoever is keeping him at the time. I neglected to tell anyone this until my mom asked one day. Or maybe I just blurted it out. She was shocked nonetheless and asked why. I said that I would rather him seize with me and not her if he’s going to do it.. she thanked me and said she was worried about that happening. I told Nick about the my decision and the conversation with my mom and he was shocked too. He agreed that he’d rather have Luke at home with me if something were to happen. 

After harassing T in neurology for a week or two we finally got our 5mg Diastat emergency med Rx. I had an Rx for 2.5mg but Dr. Sharp called in a bigger dose for Luke if he had a recurrent seizure. If Luke does have a seizure we’ll switch to Keppra instead of going up on the Phenobarb doseage. 

So far so good I suppose. No seizures to report. We’re all on high alert here. I’ve had two nightmares that he was having seizures. That is always just about the worst dream to wake up from because is your bleary-eyed sleep deprived stupor at 1am while he *happenes* to be sleeping you can’t figure out what is the pillow and what is the baby next to you. Kinda makes you a little sick. 

The side affects from weaning are visible only slightly..  So far all we can tell is that his sleep is affected. He doesn’t seem anymore ‘alert’ or ‘aware’ yet. He does seem to stagger a bit more while he walks. Nick & I talked about this and we didn’t think so but I think maybe he is.. I dont know. It’s not a very obvious difference however. 

I just cant wait to get him off these meds! We’re hoping beyond all hope that all his delays go away after these meds get out of his system. I’m sure it will be a while before we see a noticeable change if the meds are what causes all his oral motor & speech delays, gross & fine motor delays & his social & developmental delays. 


((G-ma A’s birthday at Luigis) Cool Dude.. )


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Sleep Diary: Day 14 – Revelation

Roughly two weeks ago Luke’s night waking became ridiculous. He never was a good sleeper before but I told myself “this too shall pass” and just rolled with it. I adjusted myself to pretty much accommodate him and his early rising schedule. That sucked. I’m a total night owl (thanks Dad! 🙂  ) and so was Luke. However, he wanted to be an early riser too. Well kid, ya can’t have your cake AND eat it too.. not when everyone in the house is sleep deprived.

I read The No Cry Sleep Solution and it was eye opening and such a relief. Consequently, it has spurred the desire to read more in me! I feel like questions were answered and we have a good plan that will work for us. Pantley gives many different options that work in many different situations for varies family preferences. 

For the past two weeks we’ve seen an overall nice change I suppose. We have a set bedtime routine now and we had to drastically alter what we were doing in order to get this down. Luke does thrive off routine so this is nice. Sadly, now he knows what is coming and cries when he lies down in his *toddler bed* (Yes, we changed his crib to the toddler bed. Its so much easier on my back to patt him to sleep, hold his hand, etc) 

The night wakings are changing too. Overall they are shorter I think. Im not sure, Im pretty stupid tired at that hour of the night so I cant say for sure. The 4:30 waking however is still happening. I have a good solution to work with him on but its just so hard to motivate myself at 4:30am. 

Now, here’s the revelation part ..  Roughly two weeks ago we began to wean off his anti-convulsant. (Cue light bulb – on) 

DUH! HELLO? How’d we miss this.. Weaning off Phenobarbitol has been compared to coming off *crack*. Seriously. I’ll probably get this wrong but Nick was reading the other day that there have been people who were on Phenobarb and had also at some point done hard drugs including cocaine and they said as an adult, coming off the Phenobarb was *harder*. Yikes.

Sleep disturbances are a big part of the weaning off barbiturates. Once we realized this I felt like my sleep efforts were futile. What a waste of my two weeks of self sleep deprivation to actively encourage him to sleep through the night! But really, the routine needed to happen. He needed to be in bed at a decent hour. I needed to have a couple hours of adult time with my husband. 

It’s a good thing. This too shall pass.. 

but I miss nursing my baby to sleep..




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I started reading The No Cry Sleep Solution and it starts off suggesting that parents keep a journal of the childs sleep habits for 1-2 weeks at a time while you try to improve the sleep. 

YES! I’m not doing EVERYTHING wrong for once (it seems)!!!!!!!!

So, I’m more than a 1/4 of the way through the book and feel a million times better about understanding how to help him with his sleeping. Not that I exactly know what will work at this point but I feel like I understand what makes good sleep, a good sleeping environment, and how to encourage that. What I dont know yet it how to help him not wake up. I havent gotten that far yet and really need to be making progress in that department. 

Last night was awful..

Wednesday Luke woke at 8 am

Napped from 1 – 2:30 pm (1.5 hrs)

Fell asleep in car at 8:45pm

Woke too many times for too long to even remember in my sleep deprived stupor. Luke had tummy problems from dairy I accidentally gave him so he was sick all night. So, we’ll just toss this journal entry out of the average. 

He woke at 8 am for the day.

I think Nick & I are starting to realize that Luke isn’t one of those kids that plays hard til they fall asleep on the floor, highchair, or couch. Luke will always need routines to structure his day and that we will have to stick to those routines because he thrives in a patterned way of life. We will have to start sacrificing being out late (past his new bed time) at family get togethers in order to protect his sleep.


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Yesterday Luke woke at 9 am 

Napped at 3:10 – 4:30 pm (1 hr 20 mins.. pretty decent but he was super cranky when he awoke)

Ate oates and prunes before bed

Finally fell asleep at 10:45 pm

Woke at 2:30 – 2:40 (Waking 1)

Woke at 4:30 – 4:40 (Waking 2)

Woke at 5:45 – 6 (Waking 3)

Woke for the day at 8 am

Sadly, Luke and I fell asleep on the couch last night. It’s a good thing and a bad thing. 

The good thing is that I’ve learned  that sleeping on the couch makes him have less room to move around and wake himself up. I think sometimes the fact that he rolls onto his stomach and sits upright in his sleep wakes him up. He sleeps more soundly in a confined space. The bad thing is that we can’t stretch out nicely and (me) get good comfy sleep in OUR bed. 

So, his pattern last night was much different than the night before. Keeping this sleep diary written out might make me realize he wakes or stirs more often than he does. Yikes. 

I did go to the library today and got some great books. One of which is the No Cry Sleep Solution that I mentioned in my last post. I can’t wait to crack it open!


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Message boards mamas will know this one, SSTN is Sleeping Through The Night. 

This post is for all you mamas out there (and a couple dads) who gave me suggestions on encouraging sleeping through the night on Facebook. There were so many comments here and there I decided to just blog it to make it more concise. 

I decided recently that I felt that Luke was ready to sleep through the night. I define “Night” as from the time he goes to bed between 8-10 pm until 7am, 6:30am at the earliest. Luke is just now 18 months old and before this time I felt that many things gave him problems sleeping, such as teething, growing, new developments such as walking and learning new things. New schedules and an unstable day time routine also played into this awful night time thing we had going on. Since around 10 months Luke would wake around 3 to 5am. Anywhere in that time frame he would wake and be up from 1- 3 hrs. I was ok with this since I don’t have a desk job that I have to answer to someone else. I knew that Luke would grow out of it when he was ready and I didnt feel the need to push him. I am ALL about letting him do things in his own time and helping to facilitate what he needs too. CIO (crying-it-out) is not an option. Personally, I believe it is cruel. I know many people have had great success with this tactic but I know for my son CIO would never work. He had a vulnerable personality already from his experiences and it would leave him 1) hating bedtime 2) feeling betrayed and scared. We dont mind a little fussing but never left alone to fuss it out because FIO leads to crying (for Luke) and crying leads to screaming (for Luke) and then you might as well get him out of the crib because he’ll be up for 2 more hours. 

Thats just how he is. No matter what we’ve done (outside of CIO). 

So, from all the advice from yesterdays status updates we decided to try out a few of the suggestions. That mightve been a mistake because, like introducing new foods, which one worked and which one didnt? Oops.. 


Luke napped once at 3:15-4:10. 55 minutes. 

Luke ate a bowl of oats and prunes right before bedtime. 

Luke fell asleep at 10p (which was later than I thought)

Woke at 10:30-11p (Waking 1)

Woke at 1:30-2a (Waking 2)

Woke at 4:30-5a (Waking 3)

Woke at 6:30-6:45a (Waking 4)

Woke up for the day at 9am


Luke nurses to sleep at night and for naps he gets patted down in his crib. During Waking 1 I nursed him for 15 mins and then patted him down for the rest. Waking 2 I nursed him down I think. I was slightly delirious so I cant fully remember. Waking 3 I held and patted him back to sleep. Waking 4 I nursed him back to sleep. 

Totally inconsistent, right? I know.. Consistency is the key. I cant decide if I want him to nurse back to sleep or not. Sometimes thats all that will work other times its what wakes him up. OVerall, he never wakes 4 times in one night anymore. Typically its once, but occasionally twice. 

Our room was dark, the TV off (it KILLED ME!.. I actually READ A BOOK to get sleepy), fan was on to make it cooler… No luck last night. 

So, while I was up during one of the wakings I downloaded the free preview of The No Cry Sleep Solution for Toddlers and Preschoolers  

for Kindle for iPhone.  I’ve heard excellent things about this book and feel like the title is for us. I read the whole preview and think Ill try to stop by the library and pick up a copy. This might be EXACTLY what I need. There were several stories from parents who had the exact situation we have (co-sleeping, breast-feeding, night wakings, NO CIO) 

Be watching for more updates to come on our road to STTN (Sleeping through the night) 


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