Daughter with Newly Diagnosed Generalized Absence Seizures

Posted by rchllmorgan @rchllmorgan, Nov 14, 2017

Hi, I’m a new mom with a 7 year old daughter that was diagnosed on 01/21/2017 and has over 200 generalized absence seizures per day according to her EEG. MRI is negative. We have tried 4 different medications, Zarontin, Zonigran, Keppra and Lamactil. She is not responding to any and has even had severe allergic drug reactions to Zarontin and Lamactil. We’re to the point of being lost and don’t know what to do at this point. Can’t control seizures and she’s behind in school. Neurologists just says she’s an ‘exception’. Where to go next is what I desperately need to know without causing anymore harm to my child both physically and emotionally. I’m open to any suggestions and will do anything after meeting with three Neurologists since January 2017. Rochelle Morgan

@punkychica

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?

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Hello @punkychica

I can certainly understand your concern for your daughter. Did your doctor indicate why he is referring her to an endocrinologist?
Endocrinologists are often the doctors who see patients with high calcium levels (which can cause calcifications in different parts of the body). Here is an article that helps explain high calcium levels, https://www.healthline.com/health/calcification. High levels of calcium can often indicate a problem with the parathyroid (different than the thyroid, but located in the same general area). Did your doctor indicate what part of the brain was calcified?

I'm looking forward to hearing from you. Wishing you and your daughter well. Will you post an update after you see the endocrinologist?

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.

@valm

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.

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Hi, @valm – just wanted to encourage you, when you have a chance, to consider posting about your experiences with autoimmune encephalitis in one of these Connect discussions on that topic:

https://connect.mayoclinic.org/discussion/is-it-autoimmune-encephalitis-or-encephalitis

https://connect.mayoclinic.org/discussion/is-it-autoimmune-encephalitis-or-encephalitis

I think the others in those discussions would be interested in hearing about your experiences.

Are you still seizure free? How is your health currently?

@lucyd719

She’s on depakote.

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How is your daughter doing so far with depakote ?

@kktpapa

How is your daughter doing so far with depakote ?

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Hello, @kktpapa, and welcome to Mayo Clinic Connect.

Wondering if you have a child diagnosed with generalized absence seizures and/or on valproic acid (Depakote)?

@rchllmorgan

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%.

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How is your daughter?

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