Community Forum

Ketogenic Diet and Absence Seizures (Petite Mal)

My daughter (7 year old with no prior medical or learning
disabilities) was diagnosed with Absence seizures three months ago.  Since that time, she has tried multiple
medications.  Currently she is on
Depakote and Topamax.  Her seizures were
as frequent as every 3 minutes.  Now,  they are currently every 25 minutes or
so.  The meds have improved her frequency
but she often seems spacey,  tired and
less likely to listen and follow through on requests/directions.  A family member stated that she is getting “spoiled”
but I disagree.  I believe many of the
issues are medication related but have no way to prove it.  Her handwriting is different when she is “spacey”
and her private teacher (currently out of school until better seizure control)
stated that teaching after she started the Topamax was “like teaching a
different kid”. 

I am concerned about the negative effects of the meds and if
they “really get better over time”.  I am
followed by the Hopkins Group and was asked if I wanted to try Ketogenic
diet.  I declined and stated I wanted to
see how she did on this med combo and then make a decision. I have several more
weeks to we reach the optimum doses.  Now
I am concerned that maybe I should attempt the Keto Diet first to see if the
seizures can be controlled without meds. 
Then I can tell if the issues are med related.


My question is :  Have
you treated your child with Absence Seizures or Petite Mals with Ketogenic diet?  Did it work? Would you do it again?  Did you have fewer side effects from the diet
than from the meds?


If Hopkins is following you, they likely can help.  Yes, meds and seizures do a number on kids my 4 year old was a zombie and shell of a child until we insisted on Keto. She was declining academically because of seizures and meds, couldn't follow directions and seemed hyper at other times.  

We did keto for 5 years (longer than most but we had 5 seizure types including absence)...Now my daughter is 10 1/2 no longer on meds or diet has been seizure free for 4 years and released from all neurological care last year.

Keto works for all kinds of seizures and epilepsies. Given she is 7 years old, they may trial her on Modified Atkins. If she has failed 3 meds, you really do not have anything to lose by trying dietary therapy.

April Runge
mom to Nevin, Doose Syndrome, seizure free, med free and diet free

Our story is quite similar. In 1997 our son Kyle was diagnosed at 9 months old with head drops. Multiple meds were given with no control of the seizures. Lots of side effects from the meds made our little boy a zombie or hyper. The diet was not "offered" to us, we found it. And thank goodness we did. Three weeks after starting the diet (he was 1 yr old), he went seizure free and has been ever since. He was on the diet for 2 years then slowly weaned off. I am a true believer that the diet works, it just takes some time to find the right ratio. As for side effects from the diet, there was nothing we could not handle compared to acting like a zombie or hyper.

Topomax definitely makes me spacier, as did Tegretol. I have gotten more used to the effects, but I wouldn't say they lessen, which is why Keppra is still my primary medication--I'd rather have some mood swings than be spacey and heighten ADHD tendencies.

That aside, I can't say anything about the Ketogenic diet specifically, but I can say that my sister who has both Celiac and epilepsy stopped having seizures after she stopped having anything to do with gluten, though she'll never get to experiment with coming off of the diet for obvious reasons. Gluten has also become a seizure trigger for her now, even in non-food form.

Anyways, I think trying Keto or modified Atkins would be very worthwhile, as you don't like the effects the medications are having on your daughter. It'll be a tough change, but if you've got the support from Hopkins that'll help a lot.

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