Saturday, June 29, 2013


When Ty was just a little boy and we were having weird sleeping issues, we were sent to a Neurologist named Dr. Saunder Bernes. He came highly recommended and so we went. Tyler was all over the place in his office. While we were discussing his sleep issues, he casually said, “ Well you DO know that he has Cerebral Palsy.” It was the first time that we had heard that diagnosis from a doctor. It had been in the background and it had been mentioned by therapist, but never something that we had ever heard “ YOU HAVE CEREBRAL PALSY.”

That day didn’t do what I thought it would do. In fact, it did nothing. He was still Tyler and we still knew we would be doing so many more things than we ever thought. But Dr. Bernes did give us a start on Ty’s sleeping issues and because he is kinda old school and we got exactly what we needed. He ordered an EEG and we stayed over night in the PEMU unit at Phoenix Children’s and Ty’s results were really good. He had no signs of seizures and we did have some sleep disturbance, but it was taken care of. That was the end of our need for a neurologist.


When we moved to Utah we still had no neurologist because we didn’t need one. All our needs were met very well by our neurosurgeon. When Ty had his seizure in December 2011 we added neurology back to our list. We were fast tracked into seizure hood and meds were added, changed once and then we had one follow up. It was all knew to us.

And then we moved.

Got all my referrals I needed and picked the doctors that we had and didn’t have and do our start up visits. I got our neurologist from our pediatricians. Got in. Ty was doing great. I brought up my stuttering concern to her just like I had to our pediatrician and our pediatrician in Utah and our neurologist in Utah and I was told it wasn’t a true stutter so it would go away. She said see us in six months.

I ALWAYS see every single specialist in the summer for Ty. Always before school and we get all meds we need for school and any changes made before we start. We don’t want any changes to show up at school and we want him to start off great.

When our little laughing episode caused some major neurological changes and behavioral changes in Tyler we started to move. We went up the ladder of command. We saw his ped, he suggested to get in to Neurology. Neurology was booked till August but we could possibly come in in August. As the behaviors continued and his ability to make it through the day continued I called and was sent to the ER.

So after our stay, our Neurologist sent us to our Neurosurgeon who had no clue why we were even there. The hospital notes didn’t have anything on there for him to be concerned for. We didn’t have anything to even compare his scans to so there was NO reason for us to have wasted our time and money and energy to go to see them.

Next day was our EEG from the neurologist. We tried to set up Tyler for the day by showing him pictures, explaining that it didn’t hurt. We had his hair cut WAY short so that it would be easier to get everything in and out and really impressed upon him that he is SO brave and that he had this.

He had a major meltdown and he was given a blessing from his dad. He would whisper “ I think I can do this. I am scared.” We sent him off on his own to have no noise and not be overloaded sensory wise.  Let’s just say it was a VERY long night.

Our night/day was a sleep deprived one. Ty wasn’t able to go to bed till midnight and we were up by 5:00am. 4 hours of sleep and it was INSANE. Trying to keep Ty awake for the drive into Phoenix invoked a few tears but we got there.

We ate a little lunch, got some yummy drinks and went back to the PEMU unit to get ready to do the test. We were told to expect at least 3 hours if not more. We had a WONDERFUL team and they were fast, quick and efficient. I was expecting MANY more tears than we had. It was pretty unpainful.




He was trying so so hard not to cry. He was just asking them are we done yet. But he is doing well at this point considering his sensory problems.


Some tears starting as we started the tests. He had already done the photo lights and he did really well with those. 




Ty has such a connection to this Bird. But he was about ready to lose it. At this point they were getting ready to let him go to sleep. He was DESPERATE to close his eyes. It wasn’t to long before he fell asleep. 

As Ty started dosing off he asked me to help him think of something happy. He said he wanted to think of Daddy and Grayson. Within seconds he was asleep. And the test was officially going. I moved to the end of the bed to watch the face of the tech. He was a student. He needs to learn to not make it NEAR as obvious that there was issues.

The test of 4 hours was OVER in 35 minutes.  The Tech couldn’t say anything. So I had to guess that I as quickly as it was over there was some massive issues. After the tech helped us out, she explained a little of what I already guessed. But she couldn’t tell me what the diagnosis, or the treatment is. But the one thing we can be sure of is that he is not having constant seizures.

Because I KNEW there was something wrong, I was immediately on the phone with our neurologist to get this little boy and his brain some respite. But instead I was given the crap, stupid mom talk. But that is on the next blog.

Ty’s brain is in constant epileptic activity where it fires and fires constantly. It is coming from all over his brain and not just one place. This pre seizure activity is a lot like the pre tremors before the big earth quake OR the mini aftershocks. His behaviors have changed back in the last 3 weeks. But since I can’t get in to anyone we are documenting every single day in my medical notebook for him. I will be interested in patterns we see. The only time I won’t be doing the documentation is on Saturday’s since I work now. But the list is down there for everyone who helps out.

Next post.... CRS, Why we hate our neurologist choices., and please don't  treat moms like they are dumb.

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