How the Modified Atkins Diet Helped Give Her Epileptic Son A New Life by Annette Siefert
Originally published in the April 2013 issue of CarbSmart Magazine.
My son, Casey, was diagnosed with absence epilepsy in May of 2009 just prior to his 10th birthday. The neurologist told us it was “quite common” for kids to develop epilepsy during childhood, and then to grow out of it in their late teens. Casey started medication right away, and the seizures were gone after just a few dosage adjustments.
That October, our family participated in our first End Epilepsy walk to raise awareness and funding with the Epilepsy Foundation. I have a clear memory of walking by all of the booths at the end of the day. Vendors, doctors, inventers—and then The Charlie Foundation. The booth was manned by Jim Abrahams who along with his wife Nancy had brought back into mainstream the ketogenic diet for seizures due to their son Charlie’s battle with epilepsy. I scoffed at the literature thinking to myself “I wouldn’t put my son on that diet if it were the last option available”.
That was before the side effects of the medications began.
First, uncontrollable hyperactivity. Next, weight gain – about 15 lbs. in 6 months. Soon after, a switch to another drug. Depression, lethargy. Then, another drug, and another. At one point, Casey was sleeping 15-18 hours per day leaving time only for school in between. However, due to depression and a “foggy brain” he couldn’t perform in school either. His grades plummeted. After 2 years of unsuccessfully trying to get the medications dialed in we began searching for other options.
By that time, the absence seizures had returned and tonic-clonic seizures began as well – the kind that most people think of when they hear the word Epilepsy. There was talk of brain surgery, but after an overnight EKG we learned he was not a candidate since his seizures were generalized to his entire brain. Next, we contemplated a VNS (a pacemaker-like device that sends small shocks to the brain every few seconds), but again Casey was not a good candidate.
Finally, our neurologist proposed a form of the ketogenic diet; The Modified Atkins Diet for Seizures (MAD).
He explained that it would take a lot of will power and discipline on Casey’s part and that of our whole family. The rate of success for teens was not nearly as good as for infants and younger children. After meeting our MAD team (Neurologist, RN and dietitian) I did extensive research on the diet as well as menu planning during the last few months of 2010. After spending New Years Eve dining on what he referred to as his “last meal,” Casey began the MAD Diet for Seizures on January 1, 2011.
Maybe because we had done so much research, pre-shopping and cooking, the diet kicked off much easier than expected. Casey actually enjoyed trying the new foods. He liked shopping with me, searching for low carbohydrate foods and deciphering labels. We perused The Charlie Foundation website, Atkins books, and just generally surfed the internet for recipe ideas. It was all just a bit too easy – other than the extra time to plan, prepare and shop for the meals.
So, no one was more surprised than I when within a week the seizures decreased from 50+/- per day down to just a few in the mornings.
It was unbelievable. A miracle, really. After a year and a half of battling this monster, how could just one week of the diet make such an impact? We were sold. Whatever we had to do we would make this work. We began serving Casey on fine china, letting him use a fancy champagne glass to drink from, whatever he needed as motivation it was his. And he remained motivated. His energy level came back. He was more focused. The seizures had really taken a toll and he could see that he was feeling more like his old self. His teachers reported that they were not seeing seizures in class. His friends did not see them on the PE field. The few seizures he did have in the mornings were so subtle that my husband and I could barely determine if they were actually seizures at all.
Then, suddenly, just 3 weeks into the diet, the seizures returned. A few in the morning, here and there in the afternoon, and a couple more in the evenings. One morning he had 25 before he left for school. Our MAD Team assured us that this was normal. Everyone reacts differently to the diet, and they were highly encouraged that we had seen such great progress so early on. We had committed to try the diet for 3 months, and the reason for this they assured us was because there would be some fluctuation while the body was getting used to a new way of eating.
Our dietitian reviewed Casey’s food diary and had a few ideas on why we might be experiencing some changes in the seizure activity. We made adjustments and pulled several would-be trigger foods out all together, adding them back one by one if they did not seem to trigger his seizures. It took many months of adjusting and adapting.
After a year on the MAD Casey was still experiencing a handful of morning seizures.
Along with our MAD team, we decided to try the most stringent form of the Ketogenic Diet – a 4:1 ratio – in hopes of eliminating the last few seizures. In order not to discourage anyone from trying this I will not go into deep detail, but suffice it to say it was very difficult for Casey and for our family. The team adjusted his ratio down until it became more palatable but for Casey this more stringent form of the diet did not have any more success than the MAD. After 7 months on the Ketogenic Diet, he returned to the MAD.
You might ask, what did this extreme form of ketosis do to a teenagers body? While the diet must be medically supervised by a ketogenic team, and include several supplements, eating all this fat did not negatively effect Casey’s weight or stamina. He, in fact, lost all the weight gained due to the medications and a few additional pounds. His energy level allows him not only to do well in school but to participate in the intense sports ice hockey and bike racing.
So, as it turns out diet therapy really was the last option for us.
This year at a local Epilepsy Society event, I was able to personally thank Jim & Nancy Abrahams for their tenacity and perseverance in making the diet a viable treatment for other families. I was also able to confess my disregard for Jim in that booth so many years ago.
Today, Casey still experiences a few daily seizures. We remain optimistic he will grow out of them by the time he reaches early adulthood. There are still challenges such as going out to dinner, to parties, and planning vacations. Or, finding the time to cook and the creativity to come up with new recipes. But like all challenges it has become a part of our life, our normal. We feel very fortunate to have an amazing child with willpower most of us will never begin to understand.
He, in fact, lost all the weight gained due to the medications and a few additional pounds.
Annette Siefert is the mother of two boys, Nolan (16) and Casey (13). When she is not curing pork bellies with her husband Dave from their killer, homemade bacon, you can find her in the garden or bicycle riding along the coast. In her “spare” time she dabbles in interior design and vintage furniture. They live in Los Angeles with their 2 cats, Aang and Lyra, who also enjoy a low-carb lifestyle.
Follow the family’s journey with the Modified Atkins Diet for Seizures on Annette’s blog site Modified Mom.