Tuesday, September 22, 2009

Officially diagnosed with "Seizure Disorder"

I am sad. Heartbroken, pitiful, pathetic, and sad. :(

Peanut's EEG definately showed seizure activity, which is scary to me since we didn't notice any seizures during the 45 minute test. That means she is having many more than we originally thought, that we aren't even seeing. On the EEG, they were localized seizures but then they spread.

For those of you with the background to know and understand, here is what the EEG says.

There were definitive sharp waves existing over the left hemisphere, with a broader field and mainly encompassing the C3-P3 electrode at times with spread to the left frontal head region, including the whole left paracentral head region. During sleep, the above-stated left hemispheric paracentral sharp waves also had a tendancy to spread to the right homologous head region at the right paracentral head region and increased significantly in abudance. No pathalogical showing was seen during wakefulness. This is an abnormal largely asleep and brief awake EEG tracing, due to the left hemispheric epileptiform discharges, and revealed more localized to the left centroparietal head region and had a tendancy to spread to the right homologous head region, as well.

The above findings are most consistent with left hemispheric focal absence seizure with a tendency to be secondarily generalized.

SO. The neuro says that this means even on the Neurontin as at the higher dosage she is still having a lot of seizures we aren't seeing. He said that the Neurontin is probably enough to prevent the focal seizures from turning into generalized, but not to stop them completely. We are to keep a log of all seizure activity, including the staring spells she is doing frequently. If we notice that they are happening frequently still, we will either up her Neurontin or add another seizure med.

In the meantime, he is ordering an MRI of her brain. We did the spine last month, but haven't looked at the brain in a few years. He says there is always concern when seizures start out of nowhere, but even more when they are localized. You have to wonder what that little piece of the brain looks like. Could there be a lesion, a vascular formation, anything. Given that she is having surgery next week, the MRI will probably not be for a few weeks.

She seriously can't get a break right now! We had two years of hell, and then three great years. We said how wonderful she was doing ... no hospital stays, no surgeries, nothing. Now so much is happening at once.

Like I said, I just feel SAD. :(


Alicia said...

I am so very sorry to hear this. Please know that you and your sweet Peanut are in my thoughts and prayers.

Hugs and love...

HennHouse said...

Sending you lots of virtual hugs. And many, many more prayers.

Bellismom said...

I am so sorry to hear that you didn't get the news you wanted. Praying for all of you!

Junior said...

keeping you in our prayers and sending lots of big hugs.

The Octopus Girl said...

I'm sorry it wasn't better news.

Timothy Ethan said...

OMG, I can't believe that you used those 3 aweful words together, "She hasn't had...!" I have learned from past experience with my son to NEVER use those 3 words together "He hasn't had...!" because everytime I do, he does the opposite.

I'm sorry to hear that the result of Peanuts EEG weren't good. Both of you are in my thoughts. (((Hugs)))

Kaylene said...

I'm so sorry, I'm keeping you in my thoughts and prayers. Hugs for sweet Emily. :( AND YOU.

The VW's said...

I'm so sorry!!! Seizures SUCK!!! I wish that you had gotten better news! I pray that they can be controlled soon and stay that way! Hang in there sweet friend! HUGS!!!