Final EEG results

Colbey Raye was finally able to be unhooked from the prolonged EEG Friday morning! It went on for 43 hours and in that time frame 9 seizures were detected, out of these 9, 6 were clinical seizures and 3 were subclinical (seizures that are happening in the brain and appear on the EEG but show no physical signs or symptoms otherwise) and only 2 of them were seen by Josh and I. A lot of the seizures we missed happened during the night while we were all sleeping, and a few were much shorter (10-20 seconds) and only affecting the right arm so they can be a little bit harder to catch. This is the first time that subclinical seizures have been detected on any of Colbey Raye’s EEGs, and it is a little bit unsettling knowing she is having these non visible seizures and unless she is on an EEG there will be no way at all for us to know if and when she is experiencing them. The neurology team and epilepsy team both stated that even though these subclinical seizures aren’t wanted, their main concern are the seizures that are visibly affecting her little body and causing her oxygen levels to drop. They also said that if Colbey Raye is having clinical seizures she is most likely having subclinical as well. But when she is clinically seizure free then she is most likely subclinically seizure free also. New hard information but none the less helpful in our attempts to move forward with another plan. Most of these seizures are coming from the frontal lobe and some are coming from the outlining areas where her brain resection was, they are all focal and coming from the left side! All good news in the sense that they are similar to the ones caught prior to surgery and that they remain on only the left side of the brain. The next steps for now are; having her case presented again at the epilepsy conference on Monday, with the information from the EEG Dr. Owens feels that Colbey Raye’s chances of receiving a second surgery are good, And then we will have to call and schedule another appointment to see Dr. Ojemann and go over what his thoughts are for another surgery. Not as many hoops to jump through or buttons to push this time around and hopefully the doctors will all agree Monday that surgery is her best option for seizure freedom. The emotions are high in the Smith house hold these days, especially for me, but I know God is in control and his plan is far greater than the ones I had. Trust, faith and a lot of love can help these next few months go by.

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One thought on “Final EEG results

  1. Janet

    Hang in there brave Mama! I admire you, you’re so strong through all of this. Praying for your sweet little girl and alll your family

    Reply

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