An Autism Diary

A day in the life of David Hartley

Update

Sorry for the delay in new posts. The boys have been keeping me up into the early morning hours for about a week now and I am exhausted. lol  They’re starting to settle back down again though thankfully.

We saw David’s pediatrician yesterday (Tuesday) and had a wonderful visit for a change.  The doctor has always been great but David actually was fully cooperative this time and even openly initiated and interacted for a change through having the doctor check his Woody doll too. lol  It was cute. : )

on the way to the CT Scan (couldn't get pictures during the EEG)

on the way to the CT Scan (couldn’t get pictures during the EEG)

Today (Wednesday), David had an EEG to start the process of trying to figure this all out and based off the reports of his repeated regressions and the severity of some of them, the doctor at the hospital also wanted to get him an MRI to check for brain damage and/or scar tissue I think she said (another piece of the puzzle is how she explained it) but my insurance denied it. They then tried to do a ct scan, but David suddenly jolted awake from the anestesia and was frightened and violent so they brought him back to the room so I could help him calm down.

He was a brave little trooper over all though and I am so proud of him.  He did his best and that is always enough for me. : )  Even though the doctors were not able to get a closer look at David’s brain, they did get the EEG testing completed and I was told I should be able to hear the results either in the next couple of days or when I see the pediatrician again (working on getting that appt set up).

playing with cool toy while waiting for David

playing with cool toy while waiting for David

We had a bit of a scare during the recovery time afterwards though today that has me a bit nervous.  David was already unhooked from everything and walking around again, so we don’t know for sure what caused the episode, but David had another staring spell again where he just checked out on us all of a sudden and couldn’t be reached.  This one lasted longer than any of the others have though which kind of troubles me.

Someone left the door to the hallway open and he saw it and started heading out into the hall. I called out for him to halt and he stopped abrubtly at the edge of the tile and carpet barrier… He doesn’t usually just stop like that without some form of resistance so I started calling his name and told him to come here but he wasn’t responding. When I went over there and got in front of him he was just staring off into space again and I couldn’t get his attention.

Recovering and eating snack.  Those headaches were bothering him for almost the rest of the day poor kid.

Recovering and eating snack. Those headaches were bothering him for almost the rest of the day poor kid.

I was snapping my fingers and clapping my hands in his face, raising my voice while calling his name, even tapping his shoulders and arms.  Nothing… not even a flinch or a blink.  About the time the nurse was ready to call someone he suddenly snapped out of it, shook his head and said “pretty”.  He kept saying that as an answer to everything we said so I finally just told him to show me and he pointed past me. There was a picture on a section of the carpet directly behind me.  When I moved back so we both could see it again, he said “pretty” again and started walking off on me again.  When we tried to re-direct him and get him back in the room, he wasn’t responding again and just kept talking about seeing his pretty.  The nurse finally succeeded at getting him to follow her through some nearby doors where there was an animal mural on the wall and shortly after that, we were able to get a slightly dazed, but at least with us, David back into the room again.

To be honest, it was kind of weird and a bit scarey…  That was one of his longest too.  At least 1 to 2 minutes from the time he suddenly halted in his tracks to the time he shook his head and started saying “pretty” over and over.  Not sure how long the daze that we ended up with afterward lasted.

I sure do hope we can get to the bottom of all this soon…  I hate the waiting game. : (

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9 Comments

  1. caffieneplease

    *hugs*
    Waiting can be so stressful!! Especially when you are not sure what’s going on. Did David have a sleep -deprived EEG or did he have anesthesia?

    • He was sleep deprived but he still had to have anesthesia because he wasn’t tired enough even with just a couple hours of sleep from over 24 hours. (David’s choice not ours). He also has so many sensory issues, it took 4 of us to hold him down for every little thing they had to do so the doctor decided he just needed to be put to sleep for the procedure.

      He got extremely panicked and violent though as the medicine first started going in. And again when he suddenly woke up (about 30 minutes sooner than he should have been able to).

  2. marciakayx

    I am so sorry, sweetie. I hope they can find something out soon.

  3. Did they do an EEG under anesthesia or the ct scan? I am very surprised if it was the EEG. Our Neuro says that it is very rare that anyone would have a seizure under anesthesia because it suppresses seizures. It does sound like he is having Absence seizures, though I hope that’s not the case! Poor little guy. 😦 poor mom!

    • They put him under for the EEG. Said it’s basic policy for them to do so. Especially with Autistic kids because it’s so hard to get anything done with them alert/awake

    • any suggestions on what I should do/ask because of that?

  4. I am not a Doctor. Just a person who has been here a while and seen some things. It sounds like sweet David could be having what we call here “focal fits” I have known children to have them like this and they are actually just a bit of extra electrical activity in the front of the brain. (that was what I was told and of course , again I am no Doctor) I don’t think they cause scar tissue but you will have to ask your experts to verify that. Now I have some good news. In many cases (not all) the children grew out of them. Keep collecting your data. It will be eayer when you know exactly what it is you are dealing with. : )

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