Sleep Clinic

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.

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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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