Our Trial continues..

Gabrielle had the MRI June 7th. The following day was very emotion filled. Gabrielle had me so worried. I prayed for her all day. She slept most of the day or was extremely fussy. She had projectile vomited several times and when she was awake I was walking around trying to keep her content. I became really concerned about her that afternoon. She wasn’t smiling, would barely make eye contact and she was having trouble supporting herself. I gave the doctor a call and he felt Gabrielle was still recovering from the conscious sedation on top of the seizure medication. He recommended I cut back on her medication dosage that night and see how she was by the next day. That evening she was doing a lot better. She was smiling, making noises, and playing with toys.

In addition, when I called the doctor with my concerns they gave me the MRI results and said that everything was NORMAL!!!! Let me tell you that was AMAZING after the hours I spent on the web becoming familiar with every neurological disease that can cause seizures in a 7 month old!!! Epilepsy can still be a difficult thing to control even when a cause is not identified but let me tell you we had a lot to celebrate because it was not a tumor, it was not a vascular malformation, it was not a developmental malformation, and it was not some horrible genetic disease like tuberous sclerosis that can cause tumors to form throughout most systems of the body. We were off to have a Yay God Celebration!!!

The seizures however continued despite adding a second anitconvulsant (Keppra). We went for a second opinion with Dr. Lewis at Duke. He rechecked the MRI and informed us she had cortical dysplasia which is a malformation of the brain that often causes seizures. The radiologist who had originally read the MRI had made a serious error. We were told meds can help control seizures in this case about 1/3 of the time.

We continued to pray for Gabrielle. On July 16th she had 7 seizures in 24 hours despite being on high doses of anitconvulsants. She was fussy and had little time when she was alert and happy. We began to investigate whether she would be a good candidate for brain surgery to remove the cortical dysplasia that was identified on the MRI.

We took Gabrielle into Duke ER and her meds were changed again to include phenobarbital. We met a few days later with Dr. Grant a pediatric neurosurgeon. He told us she may be a surgical candidate but we would need to do further testing to know for certain. He told us the dysplasia appeared to be a good distance form the motor strip which was excellent news! Gabrielle was scheduled for an MRI videoEEG, and PET scan.


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