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rchllmorgan
@rchllmorgan

Posts: 7
Joined: Nov 14, 2017

Daughter with Newly Diagnosed Generalized Absence Seizures

Posted by @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

REPLY

Have u thought about trying the Ketogenic Diet? that might help!

Hi, my name is Tim Sheppard. I also have epilepsy, and have had over 4 operations to try to control them. Now, I take “oxcarbazepine, 1800mg a day, also 100mg of a newer drug called “briviac”, and I have a “vagus nerve stimulator” in my chest, that bring me out of seizures or at least make them weak, so it’s not as bad.I still have seizures, but they are alot better now..talk to your doctor and find out if any of that will help.

@brjudevo79

Have u thought about trying the Ketogenic Diet? that might help!

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Yes, that’s an option. Thank you

Thank you for the names of these meds. I have been looking at diet and this procedure. Good to know the procedure improved your seizures and might help my daughter!

Hi @rchllmorgan, I’d like to add my welcome. You might also be interested in joining these conversations:

– My son was just diagnosed https://connect.mayoclinic.org/discussion/my-son-was-just-diagnosed/
– Ketogenic diet for children http://mayocl.in/2j4h7zQ
– #AsktheMayoMom about Pediatric Epilepsy http://mayocl.in/2mzpuVY

Also on Nov 29, we’re hosting another Video Q&A about epilepsy with Dr. Tatum from Mayo Clinic Florida. I hope you can join the live event. https://connect.mayoclinic.org/webinar/mayoclinicneurochat-about-epilepsy/

What are the next steps according to the neurologists that your son is seeing?

@colleenyoung

Hi @rchllmorgan, I’d like to add my welcome. You might also be interested in joining these conversations:

– My son was just diagnosed https://connect.mayoclinic.org/discussion/my-son-was-just-diagnosed/
– Ketogenic diet for children http://mayocl.in/2j4h7zQ
– #AsktheMayoMom about Pediatric Epilepsy http://mayocl.in/2mzpuVY

Also on Nov 29, we’re hosting another Video Q&A about epilepsy with Dr. Tatum from Mayo Clinic Florida. I hope you can join the live event. https://connect.mayoclinic.org/webinar/mayoclinicneurochat-about-epilepsy/

What are the next steps according to the neurologists that your son is seeing?

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Thank you so much!!

Hi my name is Amanda. I’m 34 yrs old and started having seizures the end of March this year. I had MRIs and EEGs done but turned out normal. The place I was going to at the time just kept switching my seizure meds and didn’t seem like they wanted to find the cause. As before all of this I was healthy with no problems. So I advocated for myself and made an appt at Mayo. And I’m so glad I did…my first appt with the neurologist gave me hope. I had more tests done (MRI, PET scan, CT scan, EEG, spinal tap, and others just to rule out cancer) and they worked with an auto-immune specialist and I was finally diagnosed in Sept with Autoimmune Epilepsy. They found an abnormal antibody (Gabba B) in my blood and CSF fluid. I am now on immunotherapy, just had my last steroid infusion and am on an immunosuppresant. I am feeling so much better and haven’t had a seizure since July. I don’t know if this would be relevant to your daughter, but I know my condition is rare and I believe still new. Not many people know about it. I am still on seizure meds for the time: Keppra, Oxcarbazepine, and clonazipram (to help me sleep and anxiety). My immunosuppresant is CellCept. The goal is to have me off all meds within a year (fingers crossed). I hope this information helps or at least opens a door for you to ask more questions to your doctor.
Good luck and you can always message me if you have any questions or want to talk.
Amanda 🙂

Hi. I also have a seven-year-old daughter that was recently diagnosed with absence seizures. She also has been more seizures. from all that I’ve read and what the neurologist has said Keppra will not treat absence seizures. Depakote and zarontin are the treatments of choice. Have you guys considered Depakote? I have a good friend who’s daughter was on it for three years. She had 30 or more seizures a day. She went over a year without a seizure On Depakote and has been off all meds for the last three months- she’s 10 now.

@lucyd719

Hi. I also have a seven-year-old daughter that was recently diagnosed with absence seizures. She also has been more seizures. from all that I’ve read and what the neurologist has said Keppra will not treat absence seizures. Depakote and zarontin are the treatments of choice. Have you guys considered Depakote? I have a good friend who’s daughter was on it for three years. She had 30 or more seizures a day. She went over a year without a seizure On Depakote and has been off all meds for the last three months- she’s 10 now.

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@lucyd719 Welcome. How are your daughter’s seizures being managed?

She’s on depakote.

Ethosuxamide 250mg four times a Day has controlled my daughters abscence seizures since day one. She has Lamictal on board 200 mg per day just to cover if she were to ever have a grand mal. Excellent dr has been key. Good Luck!

@baldwin7

Ethosuxamide 250mg four times a Day has controlled my daughters abscence seizures since day one. She has Lamictal on board 200 mg per day just to cover if she were to ever have a grand mal. Excellent dr has been key. Good Luck!

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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%.

@lucyd719

Hi. I also have a seven-year-old daughter that was recently diagnosed with absence seizures. She also has been more seizures. from all that I’ve read and what the neurologist has said Keppra will not treat absence seizures. Depakote and zarontin are the treatments of choice. Have you guys considered Depakote? I have a good friend who’s daughter was on it for three years. She had 30 or more seizures a day. She went over a year without a seizure On Depakote and has been off all meds for the last three months- she’s 10 now.

Jump to this post

My daughter has been severely allergic to Ethosuxamide and Lamictal out of the four we have tried. 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 kept telling the doctors that her seizures were never that noticeable until we tried medications. And with 2 different times they thought our daughter had Stevens Johnson Syndrome, we were finished with putting her through anything else. It was a terrible experience. Just keep praying she continues this way without meds!

@ahernandez

Hi my name is Amanda. I’m 34 yrs old and started having seizures the end of March this year. I had MRIs and EEGs done but turned out normal. The place I was going to at the time just kept switching my seizure meds and didn’t seem like they wanted to find the cause. As before all of this I was healthy with no problems. So I advocated for myself and made an appt at Mayo. And I’m so glad I did…my first appt with the neurologist gave me hope. I had more tests done (MRI, PET scan, CT scan, EEG, spinal tap, and others just to rule out cancer) and they worked with an auto-immune specialist and I was finally diagnosed in Sept with Autoimmune Epilepsy. They found an abnormal antibody (Gabba B) in my blood and CSF fluid. I am now on immunotherapy, just had my last steroid infusion and am on an immunosuppresant. I am feeling so much better and haven’t had a seizure since July. I don’t know if this would be relevant to your daughter, but I know my condition is rare and I believe still new. Not many people know about it. I am still on seizure meds for the time: Keppra, Oxcarbazepine, and clonazipram (to help me sleep and anxiety). My immunosuppresant is CellCept. The goal is to have me off all meds within a year (fingers crossed). I hope this information helps or at least opens a door for you to ask more questions to your doctor.
Good luck and you can always message me if you have any questions or want to talk.
Amanda 🙂

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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%.

My daughter was diagnosed with absense seizures at age 7. We were told she should put grow them at age 11. Now at age 14 .5 we are still battling these. Her neurologist is wanting to start her on a new medicine…depakote. I’m a little nervous about the risk factors and was wondering if anyone has had any experience with this drug or any others.

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