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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

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?

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!!!

@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.

@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!

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!

has anyone mentioned The RightMed comprehensive test, that determines how she may respond to medications, based on her DNA? oneome.com

@numbskull

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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Hi, @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?

Hi. 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.

@boston2mayo

Hi. 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.

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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!!

@boston2mayo

Hi. 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.

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What meds are helping him remain seizure free? My daughter has focal seizures. Has been on multiple meds and 2 brain surgeries. Still seizures!

@mmaryemc

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!!

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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.

@mmas

What meds are helping him remain seizure free? My daughter has focal seizures. Has been on multiple meds and 2 brain surgeries. Still seizures!

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He is medication free also. Had a very successful brain surgery in Rochester Mayo clinic

@boston2mayo

He is medication free also. Had a very successful brain surgery in Rochester Mayo clinic

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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?

@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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Hi @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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