Monday, February 6, 2012

Diagnosis: Dylan

Today was the ever important psychological evaluation for Dylan. Me and my mom left Sunday around noon to head towards my grandmother's house where we would stay the night and head to the hospital the next afternoon.

I'm writing this in a weird mood. I'm not feeling myself so much, I think I feel defeated.

We arrived at the hospital way ahead of schedule so that we could allow ourselves time to find the place. After about half an hour of walking we finally were at the right place. We checked in and then I filled out the books worth of paperwork. We were called into a little meeting room with a round table, some chairs and a wooden doll house. Dylan played with the doll house while me, my mother and the doctor talked about Dylan. His upbringing, everything that could possibly seem relevant, and some things irrelevant was talked about.

Dylan was avoiding the doctor by pretending to be a dog. Every time she would ask him a question he would respond with "ruff ruff". It was cute at first, but it soon became apparent that it was a coping mechanism. Dylan felt very uncomfortable there and asked to leave several times.

After the evaluation (which took maybe 45 minutes) she left and came back with the "real" doctor. Meaning, the doctor that we came to see. He didn't perform the evaluation, his team mate did and she relayed the information with him and he deciphered it and came in with his recommendations.

He was a very nice man. He was warm and actually wanted to engage Dylan in things to see how he would react/play with him. He has some apps on his phone, a light saber one and Dylan was hardly interested in it. He seemed confused at Dylan's lack of interest in it. Dylan's just not that kind of dude. Perhaps he shouldn't have worn a lego Star Wars shirt.

The verdict is, we left there without a diagnosis. He prescribed Dylan a medication that he will take every day and it will help with irritability, impulsiveness and help him sleep through the night. He says it has a very good success rate, and I can only just trust him.

The doctor said that Dylan's behavioral symptoms are a result of the brain injury. He is referring to Dylan's brain inflammation episodes. The lesions that Dylan gets on is brain, they can heal but they leave behind scars. They never fully go away. Every time that Dylan gets sick he runs the risk of developing brain damage, and we have been fortunate every time that he recovers. It's not guaranteed every time. Especially when nobody can say why he is getting sick!

This makes sense to me, and I believe it, but it's not satisfying to me. I know Dylan. I live with Dylan. I witness every bad mood, every irrational thought process.... everything. I have known of this appt since December and I have spent alot of time agonizing over it because of this very reason. You see, since I am the closest person to Dylan I really know Dylan. Many times I can predict his wacky behavior because he's just so much a part of me, I just have a sense about him. ANd I go to these appts and I paint the picture that is Dylan, to a person that has only just met him, and they don't interpret it the way I intend it. It makes me feel as though I have failed.

I just can't buy that Dylan's behavior is a "side effect". Dylan has been having these issues since he could have issues. He has always been this way, and I tell the doctors this, but they can't see past his tremendous brain injury deal. It was a very significant time in his life and it does have a lot to do with the way he is, but it's not the root. It's not the beginning.

You might be confused about why I just want a diagnosis. I mean, really what do labels matter? They don't, except without a diagnosis you don't have access to certain therapies and services that you would with one.

I've been searching for answers for Dylan since he was 2 years old and I've been denied them every single time. He has no diagnosis for any aspect of his entire medical history. He is a gigantic gray area. Not black or white, cut and dried. Somewhere in the middle. Not quite this and not quite that... just Dylan. I think I want so badly to just put him in a box. Put Dylan in a box and label him so I can move past this and we can heal. Why is this so important to me?

Diagnosis: Dylan.


  1. I am sorry you're having such a hard time. I think what you want isn't so you can move past his diagnosis after its found except that then you would be able to move to the helping solve the issue place instead of searching to understand it place. You're doing the only thing a mother can do. Going through the necessary process of figuring it out and loving him as you go along. Its hard to be patient. Im sure its frustrating when they don't see what you understand. I hope you feel better. Maybe he's just not the right doctor :( good luck!.

  2. You're right, Alice. " I think what you want isn't so you can move past his diagnosis after its found except that then you would be able to move to the helping solve the issue place instead of searching to understand it place." That sounds like much better wording. I suppose we are, in a way moving toward that place, starting with medication. But somehow I still just feel like the doctor just didn't get it.

    I want everyone who read this to understand that I do understand how fortunate I am to have Dylan. In spite of every thing, he is generally healthy and he is progressing towards his version of normal every day. I'm blessed beyond belief that things have gotten better.

    Thank you all for reading my blog. <3

  3. Lauren, you are right when you say its hard to paint a picture of what Dylan is like to a doctor because its like trying to describe the most beautiful picture to a blind matter what you say you can never fully explain what you see or the emotions you feel seeing it to day they will have an answer and when they do itll be a relief in a way but also it will lead to more questions but remember everyone you know will be behind you 100%