Autism, Aspergers, Rob Gorski,Special Needs Parenting, Reactive Attachment Disorder, Fibromyalgia,

Tag Archive: sleep

Dec 03 2012

The Leap of Faith: Plans may change again

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On Wednesday of this week, Lizze is scheduled to have a sleep study at the Cleveland Clinic. This is a prerequisite to entering the Chronic pain rehabilitation program.

They want to rule out sleep apnea as a contributing factor to her chronic fatigue.

However, Lizze has been and currently still is, sick. Apparently, if she isn’t feeling 100%, they sleep study will be scrubbed and rescheduled.

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On top of that, services for her Grandfather, who past away Sunday night, will be on Wednesday as well.

Lizze is going to be an emotional wreck that day and I can’t see her being in a position to take part in a sleep study. My guess is that we will have to reschedule.

Unfortunately, that will put her entering the Chronic pain rehabilitation program in limbo.

We don’t know how soon we can reschedule the sleep study and the follow up appointment with her sleep neurologist.

I know this sucks but right now, we have no control over these things and so we are going to do our best to take them in stride.

This is going to be a tough enough week as it is. Perhaps it’s all for the best.

Permanent link to this article: http://lostandtired.com/2012/12/03/the-leap-of-faith-update-in-the-airair/

Oct 31 2012

The Leap of Faith: We’ve heard back from the @ClevelandClinic

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Lizze received the call today from the Cleveland Clinic’s exclusive Pain Rehabilitation Program.

As it stands,  the earliest Lizze can get in would be towards the end of January. There are a few things that will have to be done first

Lizze has to complete her sleep study and have the follow up appointment with the sleep neurologist. They said that this absolutely must happen first.  This way they can rule out apnea.

We have figured out most of the expenses will be and here’s the break down as it stands now.

1) Cheapest Hotel is $70/night x 15 nights= $1,050.00…..

2) Various textbooks will be about $50.

3) Food (breakfast, lunch and dinner) is out of pocket.  Total expense unknown.

4) If commuting, fuel will run about $200+/week x 3 weeks= $600+.

5) The cost of the program itself is $10,000/week x 3 weeks= $30,000.

6) Miscellaneous expenses are unknown.

7) Several trips to the Cleveland Clinic for additional evaluations prior to knowing what insurance will agree to cover if anything. Expenses for that are unknown.

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We don’t yet know if insurance will cover the actual program itself.  They are going to try to get it approved and call us back

Having said that, even if insurance does cover the program, everything else is out of pocket.   We aren’t quite sure how this whole thing is going to pan out. Right now we are proceeding as though this is going to happen and getting everything done that needs to get done. 

Lizze has her sleep study next week and the follow up appointment a couple weeks later. 
The program does have a waiting list and is on a first come first serve basis.  Basically, whoever can pay first, gets in first.  That sucks but it’s understandable.

On the positive side, this should happen right around tax return time and we can sink our tax return into this.  The timing may work out to our advantage.

So far, that’s all we know.  I’m hoping to gain more insight over the coming weeks as we try to put this whole thing together. 

I’m not going to let this deter me from getting Lizze the help she needs.  :-)

Permanent link to this article: http://lostandtired.com/2012/10/31/the-leap-of-faith-weve-heard-back-from-the-clevelandclinic/

Sep 09 2012

Eyes wide shut

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Elliott was up all night. Lizze and I traded off about 4am. Lizze woke up about 4am in tears because she was in so much pain.

She ended up going downstairs to chill on the couch with Elliott, who still wouldn’t go back to sleep.

I was able to grab a few hours of sleep before returning to the fight,  so to speak.

This was a rough night for almost everyone.  At least it wasn’t a school night.

This was posted via WordPress for Android, courtesy of Samsung’s Galaxy S III. Please forgive any typos. I do know how to spell but auto-correct hate me.

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Permanent link to this article: http://lostandtired.com/2012/09/09/eyes-wide-shut/

Sep 09 2012

It’s just a phase, right?

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Elliott is going though this thing, where he doesn’t like to be alone. Bedtime and nap time have been……difficult.

Tonight is no exception.  As you can see below, Elliott is very clearly not in bed.

To be more specific, he’s on the couch.

Lizze and I were knee deep in a super creepy episode of Supernatural when Elliott stumbled down the steps, sobbing. He had no idea why he was so upset, at least he said he didn’t.

My guess is that he shook himself awake again and went into a panic.

Elliott does this purge of excess energy, that looks similar to a seizure but isn’t.  We had it thoroughly checked out. 

Anyway, this happens mostly at night and the shaking wakes him up to with the sensation of falling. This really freaks him out. There’s nothing we can do about this and he’s supposed to eventually outgrow this.

That would be my best guess as to what happened. 

Regardless of what happened, we’re camping out in the living room tonight.  This makes him feel safer and he needs the sleep. 

Hopefully this will help him.  I also hope Lizze having the bed to herself, helps her as well.  She’s in so much pain and our mattress is literally falling apart.  Never buy a mattress from Value City Furniture.  :-(

I feel happy, if not uncomfortable, because I was able to help both Lizze and Elliott with one action.  How often can I claim that?

Go me.  :-)

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This was posted via WordPress for Android, courtesy of Samsung’s Galaxy S III. Please forgive any typos. I do know how to spell but auto-correct hate me.

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Permanent link to this article: http://lostandtired.com/2012/09/09/its-just-a-phase-right/

Aug 16 2012

Sleeping through the night

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You may recall that Elliott was waking up in the middle of the night for awhile.  While he sleeps,  sometimes his body purges excess energy.  It does so through shaking.  It’s not actually a seizure but it does resemble one.

The other bizarre thing that accompanies this shaking,  is the sensation that he’s falling.

This absolutely terrifies him.

When he wakes up,  he will not go back to sleep.. In fact,  for the longest time,  he refused to go to sleep because he was afraid he would fall again. 

We have been without incident for about 2 weeks now.  We increased his melatonin a little bit and that seems to be helping. 

I meant to share this before but life has me pretty distracted anymore.  Better late than never..   :-)

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**Thanks for reading**

       -Lost and Tired

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This was posted via WordPress for Android, courtesy of Samsung’s Galaxy S III. Please forgive any typos. I do know how to spell but auto-correct is working against me.

Permanent link to this article: http://lostandtired.com/2012/08/16/sleeping-through-the-night/

Aug 14 2012

Bella just can’t catch a break

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We had to contact the Vet’s office this evening because the sedatives aren’t working and we figured out why.

When Bella is away from Emmett,  she will actually sleep.  However,  when he’s around her,  she is very much his service dog. We noticed this today.  We also noticed that Bella is hypervigilant around Gavin,  especially when Emmett‘s in the same room.

We brought this to the Vet’s attention.  They told us that they hadn’t even thought of that but we are absolutely right. 

That would explain why she isn’t resting and is fighting off the sedatives. They explained that 99% of the animals put on these meds would just sleep forever and recover quickly. Because of Bella‘s bond with Emmett, she not allowing herself time to recover. 

We can’t safely increase the medications she’s was on and we don’t want to give them to her if they are not going to work. 

We were instructed to give Bella 50mg of benadyrl twice a day.  This will safely help her to sleep and she shouldn’t struggle as much. So far,  it seems to be working.  Having said that,  Gavin had a meltdown this evening and that kinda snapped her back into protection mode. 

She gets her next dose in the morning.  We just need to keep everything calm,  so she can rest.  If Emmett sits with her,  she will fall asleep,  draped across his lap.

Perhaps,  we just need to have some movie time for the next few days.  If Gavin is doing to act upon,  than he will spend time in his room reading

We can’t let something happen to Bella.  She’s done so much for Emmett,  and in turn,  us.  She’s part of our family and we owe her. 

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**Thanks for reading**

       -Lost and Tired

Please join our Autism Help Forum

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This was posted via WordPress for Android, courtesy of Samsung’s Galaxy S III. Please forgive any typos. I do know how to spell but auto-correct is working against me.

Permanent link to this article: http://lostandtired.com/2012/08/14/bella-just-cant-catch-a-break/

Aug 08 2012

When your child is afraid to go to sleep

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Elliott is afraid to go to sleep anymore.  For some time now, Elliott has been shaking in his sleep.  The shaking wakes him up and he immediately has the sensation of falling. 

This terrifies him and understandably so. 

He’s been checked out my the neurologist because there was concern that these were actually seizures. 

However,  as it turns out,  this is a phenomenon that is relatively common in kids and is usually out grown. Basically,  what happens is that Elliott‘s little body is purging excess energy. Think of it as a spring being pulled and stretched out. At some point,  the spring can’t stretch anymore and there is a release of energy as the spring comes back together.

Does that make sense?

I don’t know of this is more common in kids on the #Autism spectrum. I just know that this holds true for Elliott

Tonight was one of those nights that he was stalling at bedtime.  He was doing everything he could to delay going to sleep.  He wanted to sleep next to me and this went on for so long that I missed walking tonight.  :-( Having said that,  I couldn’t leave him like that.

He wanted to squishy couch tonight in the worst way. 

He explained that when we squishy couch,  that it’s impossible for him to fall anywhere because he’s surrounded. 

I thought that was pretty darn profound for a 6 year old to come up with.

He did eventually fall asleep and is still sleeping.  This poor kid just can’t relax.  Hopefully tomorrow is going to be better.

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**Thanks for reading**

       -Lost and Tired

Please join our Autism Help Forum

Look for “Autism Help” app at the Google Play Store

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This was posted via WordPress for Android, courtesy of Samsung’s Galaxy S III. Please forgive any typos. I do know how to spell but auto-correct is working against me.

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Permanent link to this article: http://lostandtired.com/2012/08/08/when-your-child-is-afraid-to-go-to-sleep/

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