Daughter with Newly Diagnosed Generalized Absence Seizures

My daughter was diagnosed with absence seizures around the age of 3. She went several years with moderate medication control and then when she was 9 and on keppra, she had about 5 grand mal seizures in about a month. We switched neurologists and they took her off keppra and the grand mals stopped. They even took her off meds completely for a short time but her absence seizures came back. Now she is 12 and started menstruating and had her first grand mal in years in the shower. The doctors did an X-ray and found calcification in the brain. She is meeting with an endocrinologist this week and I am a nervous wreck. Has anyone had any experience with thyroid conditions causing epilepsy or any other endocrinologist visits for this reason? Or had calcification in the brain?

I would have your neuro check for autoimmune encephalitis. They sent my spinal fluid to Mayo (highly recommended) to test for antibodies. I was diagnosed after having Facial brachial distonic seizures. My neuro never heard of AE until me. I video’d my seizures and he spent the night researching and the next day said “I think I know what you have”. Took spinal fluid, sent it to Mayo who confirmed. My body was producing antibodies that were attacking my brain thinking it was an “enemy” when it normally would attack a virus. AE is very often misdiagnosed as it is rare. Please have your Dr check for this. The sooner the diagnosis and treatment, better chances of full recovery with minimum brain damage. In the hospital they tried steroids, nothing worked.. so they tried IVIG and it stopped the seizures, though temporary. There’s an International Autoimmune Encephalitis Society group on facebook and they also have a website. Their website is loaded with information. Please please have your Dr check for this.

She’s on depakote.

How is your daughter doing so far with depakote ?

This has been so helpful! Thank you and I will keep all of this in mind. Thank you for responding! My daughter has been severely allergic to Ethosuxamide and Lamictal out of the four we have tried. A small miracle has occurred, we were going to try Depakote by another Neurologist that I was not fond of (any of them, actually), but we weaned her off Keppra and since last Tuesday, my daughter has gone from over 200 per day to perhaps 1 absence seizure in the past few days!! NO meds on board at this time. She is getting an EEG next week. We're just taking one day at a time without an explanation except since she's been on meds, the seizures have risen to over 400%.