April 19, 2013

One year

It has been a year since SB had her first seizure. I haven't written much lately about the journey which began that day. Which I realized on Wednesday when I posted about how her epilepsy has made her the source of taunting at school.

There is much to tell. I'm not sure where to begin.

Initially, the doctors and nurse practitioners we saw were talking about a Childhood Seizure Disorder. Something SB would grow out of one day.

Then an MRI revealed an abnormality in her left temporal lobe. A small area the doctors classified as "acute ischemia." That changed things considerably.

Even though three EEGs have all been normal, doctors feel certain SB has complex partial seizures. They base this primarily on our descriptions of her episodes. We keep a detailed event diary of all the episodes we witness. The findings of the MRI also match this analysis to a "T."

The type of abnormality seen in the MRI matches the kind of seizures she experiences. The cause of the abnormality is unknown. A follow-up MRI is scheduled, to see if there are any changes. Based on that, the neurologist said additional testing could be ordered.

In the meantime, the neurologist told us it was a certainty the seizures would continue. And so, with much trepidation, we agreed to start SB on anti-seizure medication in December. We were terrified; we had read and heard so many terrible things about it.

But after asking many questions of the neurologist, conducting our own research and discussing it at length, we agreed it was in SB's best interest. The chances she could be hurt while having a seizure were too great. And, seizures can contribute to brain damage, and can and do cause death.

During the first few weeks, SB did experience a number of side effects. They were not at all the ones we had expected, and were extremely difficult to deal with. But over time she adjusted, and was her old self. And life continued as normal.

Best of all, she was seizure free - until this past Sunday. That evening she had an episode we believe was a seizure. I reported it to the neurologist's office and they concurred. Then other symptoms began to occur which landed us in the office of a pediatric cardiologist yesterday.

Everything checked out in the initial exam. An EKG and Echocardiogram were normal. The cardiologist said her heart sounded good as well. It is beating fast and a bit irregular, however. Both of which can lead to the types of symptoms she has been experiencing. And cause issues.

So, he has set her up with an event monitor for 30 days. Just like the one I wore last year. My cardiologist never did give me a definitive diagnosis. Said I had some sort of electrical issue with my heart. It responded to the medication and I have been fine since.

We'll see what SB's cardio has to say after her testing periods is complete...

Photo credit
If you are new here, or haven't read any of my previous posts about SB's seizures, you can catch up by checking out these posts:

Shaken (v1)
Shaken (v2)
What if?
Can you spot the seizure?
Facing fears
The all nighter
The long day
The terrible, horrible, no good, very bad day
What you don't know
24 hours

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