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Daughter with Newly Diagnosed 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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has anyone mentioned The RightMed comprehensive test, that determines how she may respond to medications, based on her DNA? oneome.com
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1 ReactionHi, @numbskull - The RightMed comprehensive test (co-developed with OneOme and Mayo Clinic) is an interesting idea. Have you undergone this testing? Curious if you'd have any personal experiences to share?
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1 ReactionHi. My son at the age of 9 was also diagnosed with absence seizures. We were told that they could be managed with medication but the absence seizures slowly became full blown seizures. Around a dozen per day, mostly nocturnal. We tried several different medications but none of them stopped the seizures and had horrible side affects. The local doctors were clueless. Things got really bad. We weren’t getting any help and his seizures got worse. I could tell you some horror stories but I won’t. Trust your instincts. Don’t fall into the trap that we did at first by trusting the doctors every word. We left our care in Boston and found a miracle at the Mayo Clinic in Rochester, MN. But only after a battle with insurance. My son is now 17 and seizure free.
I'm at a loss of what my son can do about my granddaughter. I joined this group 7 weeks ago. 1 week after my granddaughter was put in a coma because she was having seziures. Now 8 weeks later she is still in a coma and they have tried probably 20 different medicines at different doses. This past week they started electro shock therapy. We can't afford to transfer her anywhere else. Our insurance won't cover it. I am going crazy with worry about what the doctors at UNM Hospital in Albuquerque New Mexico will want to try next. HELP!!
What meds are helping him remain seizure free? My daughter has focal seizures. Has been on multiple meds and 2 brain surgeries. Still seizures!
Maybe try contacting St. Jude? Patients there pay nothing. Maybe this way you will at least be in a bigger hospital? I can’t imagine how your feeling. Thinking of you and your family.
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1 ReactionHe is medication free also. Had a very successful brain surgery in Rochester Mayo clinic
Where about was his “problem” area? Did he have deficits after surgery?
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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2 ReactionsHi @punkychica,
I moved your message to this existing discussion, "Daughter with Newly Diagnosed Generalized Absence Seizures," so that you can connect with members who are also talking about absence seizures in a child.
If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.
I'd like to encourage @boston2mayo @cbranson3 @mmas @lolorn @rchllmorgan @baldwin7 @jakedduck1 @ahernandez @lucyd719 to offer their support with your 12-year-old daughter who was diagnosed with absence seizures around the age of 3, was on and off medications, and then had her first grand mal in years in the shower and was found to have calcification in the brain. I trust they may have some input regarding your questions: Has anyone had any experience with thyroid conditions causing epilepsy or any other endocrinologist visits for this reason? Or had calcification in the brain?
While awaiting their return, I thought you might be interested in this Mayo Clinic information on absence seizures https://www.mayoclinic.org/diseases-conditions/petit-mal-seizure/symptoms-causes/syc-20359683.
You mentioned feeling like a nervous wreck. What would you say is your biggest concern at this time, @punkychica?
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