Thinking back I realized the last time they saw Jared his Dilantin levels had been extremely high and he was lethargic. The seizure specialist called me after that appointment and changed the dose. Follow up blood work done at the local clinic revealed everything was normal a few weeks later. They had never seen Jared when he wasn't lethargic.
So when Jared mumbled "I'm good how are you?" I interrupted the doctor and translated his response. I think that threw the doctor off because he was silent for sever seconds before saying "okay".
I told him Jared had been doing well, no seizure activity, and that I wanted to take him off Dilantin. I went on to explain that I thought the drug was effecting Jared in negative ways and that he would function much better without it. I told him that I thought Jared was suffering from Nystagmus and that Dilantin was making it worse.
He told me that we could take him off Dilantin to respect my wishes. He warned me of the risk of seizures and we agreed that we would return if I suspected he was having any.
The doctor tried to look into Jared eyes and see the rapid movements when he focused. I tried to explain that it only happened when he was tired and Jared wasn't tired.
It's frustrating to deal with the doctors. They expect Jared to hold his eyes open as they blind him with lights and poke around his face. I know they need to do those things to help him, but they should understand you have to do things a bit differently with someone as disabled as Jared. Even more they should know that every TBI is different and the possibilities are endless. Jared (or anyone with TBI) will never fit into that round hole of text book symptoms and diagnoses.
In the end I got what I wanted. The doctors didn't side with me completely but were willing to admit I could possibly be right.
They want a CT of Jared's head because he's had some headaches and they want to make sure he hasn't had any changes with his shunt or ICP. They suggested several medications to help with the headaches, one of them was yet another seizure medication. I declined I told them I wanted to see Jared unmediated for a while. We agreed.
August 18th we returned to the VA to have Jared's Baclofen pump refilled. Jared had an aggressive episode as he was getting out of the car. I was actually happy Jared's brother was there to witness the event, until then no one could understand what I had been telling them.
I told the doctor Jared was still complaining of lower back pain and he had localized it to the area where the catheter enters his spine. I asked the doctor if we could check things out with a CT or MRI. He told me we could order a CT because the MRI would mess with the pump. Even though I told him he had an MRI since the pump was placed he still wanted the CT.
This doctor ordered a spine X-ray to locate the catheter and pump so he could order the correct CT scans.
Later all hell broke loose in X-ray.
The tech came out and got Jared and told me they would be back in a few minutes. I told her Jared had some communication issues and I wanted to go with them, she agreed.
We had to move Jared to the X-ray table, I did the transfer with no problems. She needed Jared to hold his arms this way and hold his head that way. I showed Jared what to do because he was a bit confused. Things were great until she needed him to lay on his side.
I rolled Jared over onto his left side thinking he could steady himself with the right arm. Jared instantly flipped out and started hitting me. He grabbed my hand and bit me hard. I kept asking Jared "What's wrong?" and he moaned "My hip!".
His hip was digging into the hard table and it was hurting him. I rolled him to his back and asked the tech for a sheet or towel. She grabbed one out of the cabinet and handed it to me. This was the first time I had looked at her and I could see she was a bit freaked out.
We rolled Jared onto his other side and he was tolerant with the towel under him. The tech told me "Thank you for helping, you're so good with him." I laughed and responded "Now you understand his communication issues.".
I was a little shaken as I wheeled Jared out to the lobby. Jared's brother was waiting on us and I told him what had happened. I held up my hand to show his brother and saw it for the first time. I had a perfect bite mark on the back of my hand. I didn't realize it had been that bad. It was starting to swell and turn red. As we walked to the car sweat stung a cut where Jared's eye tooth had broken the skin.
I drove home a little heart broken realizing Jared was becoming more dangerous as he recovered.
You aren't going to believe this.
I think Jared had (pendular) nystagmus which was mistaken for focal seizures. Nytagmus is really hard for me to describe and I don't understand it completely, yet.
Basically Nystagmus describes an involuntary (rapid) movement of the eye. It can be more pronounced when the person is tired. People are born with it and people can acquire it (think traumatic brain injury). Nystagmus is broken down into many different sub categories so I'll just describe why I think Jared has it.
- Involuntary rapid horizontal rapid eye movement, more pronounced when he is tired.
- It can be caused by brain stem damage, Jared has brain stem damage.
- Sensitivity to light and sound.
- It's linked to dysfunction in the inner ear. Didn't I post about Jared's left ear last post?
- Link to aproxia. Think about Jared's left side and the spasms ect.
- Eyes pull to or from (don't remember which) the more damaged hemisphere of the brain. Think about the deviation of the eyes that lead to the seizure diagnosis. The right side of Jared's brain suffered more damage.
- Vision problems. From what I read this describes his vision issues very well, I won't write all the details.
- Issues with balance.
- Holding the head to one side.
- Dilantin can amplify all of the above symptoms.
I'll stop now, you get the point. I could go on and on with all the details that perfectly match what I see in Jared.
Here are the symptoms that led to the seizure diagnosis.
- Eye deviation.
- Unresponsive for 30 seconds up to two minutes.
The neurologist even agreed (as well as the other doctors) that Jared's symptoms aren't typical of seizures but it seemed to be the best fitting thing to describe what was happening to Jared. Jared wasn't tired or disoriented after the "episodes" he was having. I can write the unresponsiveness to a delays caused by brain damage. It really isn't that unusual for Jared to be unresponsive, especially when he is tired.
It seems so obvious to me! Why hasn't anyone picked up on this?? I REALLY hope I can get this neurologist to listen to me.
But how do you tell a seizure specialist his diagnosis is wrong when you are me?