Sunday, March 8, 2009

What in the Hell is Cortical Dysplasia?

We came back from the hospital yesterday late afternoon. I would like to say the outlook is great, but it isn't. It isn't necessarily bad either, it's in that 'OK, things can go a lot of different ways here' category. There is a lot that I have not yet been able to wrap my head around, but I understand this so far. The neurologists gave him a diagnosis of cortical dysplasia. Of course it, like Infantile Spasms or West Syndrome, I had never heard of either.

It's frustrating and heartbreaking but now we begin the long process of trying to figure out what to do. The IS (West Syndrome) is a form of epilepsy that sometimes has a cause and sometimes does not. They think his is linked to a brain abnormality called cortical dysplasia, something they detected on the CT Scan. I'll write more as I know more, but I need a bit more time (it is Sunday) to kind of decompress. I will be back to a somewhat normal routine tomorrow for as long as that lasts until we see what the next steps are.

Right now we are giving him oral steroids as a treatment, but that will likely be changed to injections of ACTH by mid-week or sooner to try to stop the seizures. Beyond that I can't say much...with something like this you have to try, and it ain't easy, let me tell you, but try to stay focused on a single goal...and right now a goal is STOP THE SEIZURES. Nothing else really matters and I am trying not to engage in 'what if' scenarios...I am trying to take everything one day at a time, each thing a step at a time. Well, except work since we need money and making sure our 4-year old Carter stays as un-freaked out as we can keep him, those are two 'sub-categories' of things we need to concern ourselves with other than getting Bennett any kind of treatment he needs.

So that's the news thus far, I'd like to thank anyone and everyone for the help and support. It means a lot.

6 comments:

  1. Stay strong. You, Jen, Bennett, and Carter are in my thoughts.

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  2. Your entire family is in our thoughts, prayers and hopes. Here's the stopping the seizures.

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  3. best of luck to you and your family. Luke and I will be thinking of you.

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  4. Thinking of the four of you, and particularly Bennett.

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  5. Jeez, that's terrible. I hope things work out okay for all of you, especially Bennett.

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  6. becca and Is thoughts are with you and your family also. just remember to breath, and no smoking.

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