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How to Control Daughter's Generalized Absence Seizures?
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
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Have they considered a lower dose but then adding a mid day dose. It works well for me. Like I went from 600mg of oxcarbazpinie in the morning and night to a the new dose of. 450 mg in the morning and in the afternoon and then 600 mg pm
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3 ReactionsSorry to hear of your daughters struggle with her seizures and I feel your pain as a Mother. I've been walking that same path for over 27 years with my son. And still have not found the brass ring to control his seizures. My suggestion is seek genetic testing to see if she has any variant genes that might be the root cause of her seizures. Mayo has a genetic department at their Florida clinic. The theory is that once they determine if you have some genetic issue it will rule in or out specific drugs. Also be on the hunt for genetic clinic trials that are going on around the country.
In closing, be aggressive and push your provider for answers. Uncontrolled seizures can become more complex over time. I'm attaching a link to a good article on genetic epilepsy. Hope it helps. James
https://www.myepilepsyteam.com/resources/causes-of-seizures-and-epilepsy
if you haven't already joined "myepilepsyteam.com" community you should do so asap.
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3 Reactions@jamessr This is great information. I am considering this so it was like a blessing to see this information. I have been looking into the genetic aspect because, I have seizures, and nobody anywhere in any of the family tree have what I have. I was recently told by a doctor, what does it matter if its genetic, or trauma/injury? For me it matters, because the genetic component does not sell me on my particular case. I remember mine starting after a serious head trauma, so, I really want to know even though I am in my 50s. I am very medications resistant and so that poses a factor for me. Also, I have learned that it is very expensive to get the genetic testing done, do you know of any type of assistance for helping pay the expense, or anything really? I actually started out the opposite; where they were originally absence, then they became a mix of tonic clonic and absence. Then for about 30 years, I was seizure free, until I was attacked and suffered brain trauma, which started them back up, and out of control for 2 years. No medications were working. So I am very much interested in this find. Thank you.
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