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

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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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@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%.

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@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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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!

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@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%.

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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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Hello @cbranson3, and welcome to Connect. I can see why you are concerned, especially while hoping your daughter will outgrow the absence seizures.
You may notice that I moved your discussion and combined it with this existing discussion. I did this as I thought it would be beneficial for you to be introduced to the many members who have discussed much of what you are experiencing.
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 encourage to read some of the other discussions in the Epilepsy & Seizures group, where you’ll meet other parents caring for children with epilepsy, and feel free to join in with your questions:
– My son was just diagnosed: https://connect.mayoclinic.org/discussion/my-son-was-just-diagnosed/
– Second surgery for my 28 year old son. Advice needed please. https://connect.mayoclinic.org/discussion/second-surgery-for-my-28-year-old-son-advice-needed-please/
– Living with epilepsy - Introduce yourself & meet others https://connect.mayoclinic.org/discussion/living-with-epilepsy-introduce-yourself-meet-others/
– MayoClinicNeuroChat about Epilepsy https://connect.mayoclinic.org/webinar/mayoclinicneurochat-about-epilepsy/

Here's some information about Depakote:
https://www.mayoclinic.org/drugs-supplements/valproic-acid-oral-route/description/drg-20072931
I'd also like to introduce you to @bac10 @sarahlou @lorispellman @rchllmorgan @lucyd719 @shanef86 @cummings @clairesmom @ketomom @mmas as they've shared some experiences that I think you’ll find useful.

@cbranson3, how are your daughter's seizures being managed at present? Have the absence seizures increased in frequency?

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Hello Rochelle, I hope your daughter's Absences are fully controlled by now but if not I have a couple possibilities.

It is advantageous your daughter's seizures started at a young age. They are much more likely to cease on there own as she ages. The older one is when they begin the less likely they are to cease. It is very probable they will cease in early to late adolescence.

The Ketogenic diet and Depakote have already been mentioned so I wont go over those again.
You mentioned your daughter had a severe allergic reaction.. You didn't mention Steven Johnson syndrome so in case your not familier with it I just want to say if your daughter is Asian / Indian she should be pre-tested prior to being put on numerous Anticonvulsants. Some scientists believe all seizure meds may have the potential to cause SJS. Thankfully it's rare and more common in males.

1)...Phenobarbital
Id like to talk about a medication the doctors probably havent mentioned. Phenobarbital, it is the worlds most perscribed Epilepsy medication although not in the United States. It's been around over 100 years. Being a Barbituate, it has negative connotations since going out of favor in the 60's. Barbituates were replaced in the late 50's by Benzodiazapines. Phenobarbital has many side effects but drowsiness is usually the most notable. The drowsiness subsides with continued use.
When I developed Epilepsy at 15 I was having Absences (but 50 years ago they were called Petie Mals) and was already on Dilantin and when put on Phenobarbital I never had another one (51 years Absance free.)

2)..Pharmacogenomics (No guarantee spelling is correct)
Genetic testing easier to pronounce: Apparently your genes play a very significant part of how a paticular medication is going to work in your body. I don't know enough about it to talk intelligently about it. I have however talked to two people who had it done and are very satisfied with it. Im not even sure if all Anticonvulsants can be tested yet. Some can be.

3)..Fish Oil
I doubt a doctor would approve of this treatment but it has worked and numerous children are seizure free who take it.

4)..Neuro Chiropractor
My neighbors father was a Chiropractor and knew a child having 100 seizures a day. He referred the child to a Neuro Chiropractor and that child is now seizure & medication free.

5). Vitamin D
All Anticonvulsants deplete your Vit D. Vit D is essential for proper brain function. Getting calcium into bones, believed to reduce inflamation and things to numerous to mention. It's a much more important Vit than once thought. You should have your daughter's tested. If she stays on seizure meds ask her doctor if she should take a suppliment D3 They also deplete Folic Acid Check with your doctor about this.

Best wishes to you both!!!

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@cbranson3

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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@cbranson3

I use to take Depakote years ago and never had any side effects that I noticed. I was on other seizure meds so was tired but virtually everyone with Epilepsy on meds is tired. The most common side effect. My cousin takes 2,000mg a day. He has never mentioned any problems with side effects.
Best of luck to you and your daughter.

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@cbranson3

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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Thank you. This is helpful!

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Hello, I hope your daughter is feeling better. One thing that I would monitor if my child were having seizures would be their blood glucose level. It is rare but worth mentioning, because severe hypoglycemia can result in seizures so that would be something that I would want to rule out if it were my family member. Your can purchase a glucometer at your local pharmacy for around $20 and check blood sugars at home when she is having a seizure. I hope that she has or does find relief soon!

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