It's been awhile since I posted, and a lot has happened including the answer to what is wrong with Conner. His SCN1A is normal, and we just finished a 4 day ambulatory EEG. During these four days he was not given any medicine and for the first time in 18 months we caught 4 of the episodes that occur most often in the car seat. Needless to say, the moment I saw him have the seizure I felt like thousands of pounds just lifted off of my shoulders and I cried. This was Wednesday and yesterday he had 3 more on the way to the hospital. A total of 9 in 5 days, made me a bit on edge. So the doctor called today and Conner has been diagnosed with complex partial seizures that are located in the left temporal lobe. All 4 seizures started in the exact same spot. Now it's another MRI, and an appointment in about 3 weeks. I am not sure of the plan, but the doctor wants to be aggressive. As of today 18 months later, Conner has had 121 seizures. I am now sure that the car seat ones happen partially because of the sunlight. I am thankful to know the reason, now to find a way to control them. My heart and prayers to everyone who has epilepsy, seizures or a sick family member.
"Count your blessings. Once you realize how valuable you are and how much you have going for you, the smiles will return, the sun will break out, the music will play, and you will finally be able to move forward the life that God intended for you with grace, strength, courage, and confidence." Og Mandino
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