Absence Seizures and treatment

Elmocpa

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My 12 year old son has absence seizures and has for several years.

Up until the last year, treatment wasn't attempted as there were some block to that. Namely, my ex husband would not consent to treatment. I know have sole legal custody and we have attempted treatment.

First experience (May 2014): Ethosuximide. Within 1 week of starting treatment C was in a very paranoid and anxious state. He had self-harm thoughts and was so uncomfortable with human contact. I would class is as a psychosis. Off the meds with in a week, normal within 4 days of stopping the meds.

Second experience (October 2014): Keppra. Within 4 days of beginning treatment with Keppra, he had clusters of absence seizures lasting 10-15 minutes, followed by a tonic clonic seizure. Stopped Keppra, within 3 days, no additional clusters of absence and no further tonic clonic activity.

24 hour EEG shows typical absence spikes, both in sleep and awake.

C is on honor roll, does well in school, social and is generally such a happy, kind and lovable kid.

So, new neuro at the Children's Hospital is recommending treatment and I am scared to death of another bad reaction. His recommendation is Lamictal...

He says he hasn't seen anyone just "out grow" absence seizures w/o treatment and that the risk of being left untreated are greater than the risk of treatment.

Currently, we will ponder our options and see him again in 3 months to move forward or continue holding patter.

C wants to drive, so we definitely will treat as he gets older, if he's still having seizure activity.

So, given his track record with poor reactions to treatment...WWYD?

I am really at a loss and scared and worried and and and...

There's just a lot to take in and I am honestly not sure where to start and how to feel confident.

Any advice/experience would be greatly appreciated.
 

Nakamova

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Hi Elmocpa, welcome to CWE!

Sometimes it can take a bit of trial and error to find the right med. Lamictal has a reputation for having fewer mood and cognitive side effects and is considered to be effective for typical absence seizures in children. It's generally well-tolerated -- it has worked well for me but, your mileage may vary, so there's no way to predict how it will work for your son.

Often meds can have side effects during the ramp-up phase that will go away once the brain gets used to the medication. It can help if the ramp-up is "low and slow". When I went on Lamictal I started at 12 mg -- I actually had to cut apart a 25 mg tablet. I stayed at that for three weeks, then went to 25 mgs, staying at that level for three weeks, and so on.

However, if you and your son are reluctant to try another med, you might want to ask your neuro about the Modified Atkins Diet to see if it would be appropriate for your son. It has shown promise in reducing absence seizures. See:
http://www.hopkinschildrens.org/Modified-Atkins-Diet-Treats-Childhood-Seizures.aspx
http://www.epilepsy.com/learn/treating-seizures-and-epilepsy/dietary-therapies/modified-atkins-diet

Best,
Nakamova
 
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I would like to say KUDOS TO YOU!!! I had the same sez. at his age, wasn't diagnosed till I was in my 20's. My parental units were the kind that thought children are to be seen not heard, if it's not broke or gushing blood get back outside.
I love to hear stories of children w/problems getting the care and attention they need.
I see this post is old, maybe it will get to you anyway. If you do get it, please let me know I may have some advice to help you and him out. Been there, in your shoes and his.
 

Elmocpa

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Thanks for the reply. We are still working towards a treatment...waiting for a referral to Seattle Children's for a second (third?) opinion about how best to proceed.


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Have you heard of CBD oil? I always heard pot helps but I remember pot from high school, didn't like it. I enjoy sleeping and eating, don't need help and because of all my meds. I'm foggy headed anyway. I heard about pot low in thc, so I looked into it, I found CBD oil, .03% thc or lower. I was desparate, tired of feeling like crud from the meds so I ordered some. I'm suppose to be taking 1750 mg. generic keppra and 600 mg lamictal a day. I'm taking 300 mg lamictal and down to 500 mg generic keppra and haven't had a sez in over 2 weeks.
If your interested check out healthyhempoil.com and seedguids.info look into the nutritional benefits, lots of b vitamins, omegas, calcium, etc.
 

Jay1

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My 12 year old son has absence seizures and has for several years.

Up until the last year, treatment wasn't attempted as there were some block to that. Namely, my ex husband would not consent to treatment. I know have sole legal custody and we have attempted treatment.

First experience (May 2014): Ethosuximide. Within 1 week of starting treatment C was in a very paranoid and anxious state. He had self-harm thoughts and was so uncomfortable with human contact. I would class is as a psychosis. Off the meds with in a week, normal within 4 days of stopping the meds.

Second experience (October 2014): Keppra. Within 4 days of beginning treatment with Keppra, he had clusters of absence seizures lasting 10-15 minutes, followed by a tonic clonic seizure. Stopped Keppra, within 3 days, no additional clusters of absence and no further tonic clonic activity.

24 hour EEG shows typical absence spikes, both in sleep and awake.

C is on honor roll, does well in school, social and is generally such a happy, kind and lovable kid.

So, new neuro at the Children's Hospital is recommending treatment and I am scared to death of another bad reaction. His recommendation is Lamictal...

He says he hasn't seen anyone just "out grow" absence seizures w/o treatment and that the risk of being left untreated are greater than the risk of treatment.

Currently, we will ponder our options and see him again in 3 months to move forward or continue holding patter.

C wants to drive, so we definitely will treat as he gets older, if he's still having seizure activity.

So, given his track record with poor reactions to treatment...WWYD?

I am really at a loss and scared and worried and and and...

There's just a lot to take in and I am honestly not sure where to start and how to feel confident.

Any advice/experience would be greatly appreciated.
Please give him coconut oil and increase it from 1 tablespoon to 4 tablespoon over a period of two weeks. His absence seizures will most likely go away.

Here is the link to my post on this forum which includes more than 45 links to various published medical research papers.

http://www.coping-with-epilepsy.com/forums/f23/dietary-changes-seizure-control-25355/index6.html#post301061
 
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