Taking bets...

Ha! I have been trying to describe this for months now and I finally figured it all out! I was surfing the web for something to win the Dilantin battle with the neurologist on Thursday.

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?


  1. I just followed your link from BBC, the thread about the police officer who had a stroke. I think I just read your entire blog! You sound like an amazing wife. I will pray for your family and for you as you continue on this tough road ahead. God bless you.

  2. I just followed you from BBC as well. It's absolutely amazing how little hope was given to you in the beginning and where Jared is now. God bless you! You are so amazing! Reading this makes me see my husband in a new light as well, its so scary how quickly our lives can change.
    You are pouring so much energy into being a wife and mother remember to take a breath for yourself sometimes too :)

  3. Trust your instincts! Start the conversation about Dilantin itself and your concerns. There are tons of other anti-seizure medications out there. I imagine they are using Dilantin because it is the oldest and mildest. My brother has epilepsy and has been taking Dilantin for 30+ years (yes, really!). See if the doctor will agree to wean him off it and if he has a seizure, try a different medication. Good luck. Your story is amazing.

  4. I followed you from BBC as well and just read your whole blog. You are so strong and I admire you so much for what you are doing for your husband and family. Good luck.

  5. I also followed you from BBC...I have read your story and you are truly an amazing person. You strength amazes me. I have just added you and your family to my prayer list.
    God Bless you all!

  6. i follwed your link from bbc as well, i just spent the last 2 hours reading your story. you have been through so much! i will keep you and your family in my prayers and just keep strong!

  7. Thanks! I need to update but I haven't had the time.
    P.S. I was right!