Gabrielle has been having all of her seizures lately while awakening out of sleep and during the night. She is up every 1-2 hours during the night and sometimes more frequently. When I grow exhausted from getting her back to sleep in her crib I stick her in our bed. This is how I confirmed she is having at least 3-4 seizures per night. She is also having seizures upon wakening in the am and after her nap.
You can tell she does not rest well because she normally falls back asleep within an hour of getting up. By afternoon she has still been coming to life. She wants to be down playing and walking. Her appetite returns and she is quite interactive. She seems to be turning her left foot inward when she is up walking. I think the seizures are responsible. Despite all of this, Gabrielle was out playing in our cul-de-sac the other night trying to keep up with the other children. She was walking up and down the street and dodging bicycles and scooters.

We haven’t heard from the doctors about getting Gabrielle in for more testing. They only have a handful of pediatric beds that have video EEG monitors. I will probably call today just to check in with her neurologist.

Thank you for all the wonderful posts and for continuing to pray for Gabby!

Good Morning,

We met with Dr. Grant at Duke yesterday. He is amazing. He completely blows the stereotype of the self-centered, arrogant, know-it-all neurosurgeon with no bedside manner out of the water! He is so caring and compassionate I couldn’t stop crying after the appointment. He truly cares!

We went over the EEG and it definitely shows bilateral activity. The next step is to figure out if it is really bilateral or just an illusion. Dr. Gallentine will be trying to schedule a videoEEG and an ictal SPECT. These tests will give us a better understanding of what area or areas the seizures are coming from. We will also look into scheduling a MEG while we are at NYU for the second opinion. This is a special machine similar to an MRI which may also help in establishing a seizure focus. They do not have the machine at Duke and Dr. Grant feels the MEG can certainly be a revealing test.

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Hey All,

Gabrielle is at a therapeutic dosage of Lamictal now and her Trileptal levels should be in the middle to high range. She continues to have daily seizures. Over the last week the seizures are occurring mostly at night. She is awakened throughout the night by the abnormal electrical activity and still looks exhausted in the morning. She takes her medication and goes back to sleep a short time later. By the middle of the afternoon she seems pretty happy and has still been walking around.

Tomorrow we have an appointment with Gabrielle’s neurosurgeon at Duke to discuss her case. We are wondering whether to proceed with more surgery at this point. We are looking for guidance about how aggressive to be this time. How many seizures warrant more surgery? How much brain do you sacrifice to attempt to stop the seizures? What happens if the other hemisphere has subtle abnormalities not appearing on MRI?

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Gabrielle has been doing somewhat better the last couple of days. She has been having 1-2 seizures. She basically wakes up, takes meds, has a seizure, and goes down within an hour for a morning nap. After arising from the nap she can be clingy and a bit fussy but by afternoon she comes to life and is walking around playing. We increased her trileptal again yesterday because when her levels came back they were low-moderate. She still has one last increase on the lamictal to bring her into therapeutic range which will happen Tuesday. I spoke with a resident yesterday and he read me the EEG report. It sounded like most of the abnormal activity is coming from the right but there is some bicentral activity meaning it was close to midline and difficult to say which side it had originated from. He expects Dr. Gallentine will want to read the EEG himself when he returns and give me his interpretation.

I have been working on lining up a second opinion this week. Who knew nobody takes BCBS anymore? I called Children’s National Medical Center and Dr. Bruce has resigned. I called Johns Hopkin’s and Dr. Ben Carson doesn’t accept BCBS and I was going to have to go through their epilepsy center before making an appointment. I called NYU and Dr. Weiner doesn’t accept our BCBS but the hospital does. Basically after speaking with BCBS I found out the most we would have to pay out of pocket is $2200 for an out of network doctor. Sooo, we are scheduled to see Dr. Weiner May 12th in Manhattan. He has a really good reputation and has developed a 3 step brain surgery which sounds very logical. I am working now to gather all of Gabby’s records and digital test results from Duke.

We will continue to keep you posted. We appreciate your continued prayer and support so much!

Kelly

Gabrielle began having 6-8 seizures per day last week despite increases in her anticonvulsants. We met with her neurologist Monday to develop a game plan. In looking at her last post-operative MRI we can see that there is still tissue in the right frontal lobe that could be removed without causing major deficits. The problem with cortical dysplasia is the malformation can be very subtle and the margins not well defined. Therefore it is difficult to know with certainty which area may or may not be affected and thus resection is not always straightforward.

Yesterday Gabrielle had a sleep deprived EEG completed so we can assess where the abnormal electrical activity is originating. We are praying it is localized to the right because this would mean she is a surgical candidate. We should know more by next week. We continue to play around with her meds and they drew levels to see if she’s in therapeutic range. Unfortunately, cortical dysplasia is very pharmacologically resistant and often the only way to silence it is through surgical removal.

So we will wait for the results and make plans to get a second opinion.

Thanks for continuing to check in on Gabrielle!

Kelly