Epilepsy occurs at a much higher rate in children with the diagnosis of autism. I have a 7-year-old son with the diagnosis of PDD-NOS. After hearing Michael Chez, MD, speak about the high rate (about 66%) of abnormal EEGs in children on the spectrum, I got my son tested. We did a prolonged EEG, 48 hours, as recommended for children on the spectrum. Although our son was not having clinical seizures, his EEG was abnormal. We repeated the study with the same result and decided to treat our son with Depakote after reading Michael Chez’s article, “Frequency of epileptiform EEG abnormalities in a sequential screening of autistic patients with no known clinical epilepsy from 1996 to 2005” (http://www.ncbi.nlm.nih.gov/pubmed/16403678). Dr. Chez gave a trial of Depakote to children on the spectrum with abnormal EEGs; many of the children’s EEGs normalized and most had gains in speech. We not only contacted Dr. Chez for guidance on therapeutic dosages and blood levels, but we also saw a neurologist who was willing to work with Dr. Chez’s protocol.
After our son’s Depakote levels were therapeutic for a few months, we repeated his EEG to see if it had improved. To our disappointment, it had actually worsened. He was now having more than 110 EEG spikes a day − awake and asleep. We stopped the Depakote. A repeat EEG off Depakote showed the same result. We wondered why this might have happened to our son. Maybe this was just the natural progression of his disease.
After one failed course of medicine, we considered another, Keppra, because our son’s EEG presented like benign rolandic epilepsy (BRE). We did this because Dr. Eric Kosoff at Johns Hopkins University has done research with children diagnosed with BRE, a pilot study transitioning children onto levetiracetam monotherapy to improve language dysfunction associated with benign rolandic epilepsy (http://www.ncbi.nlm.nih.gov/pubmed/17936689). The study showed improvement of comprehension and receptive language after a course of Keppra.
We heard Dr. Kosoff speak at this time. He talked about the modified Atkins diet and epilepsy. Dr. Kosoff had used the diet with children with refractory epilepsy, who had failed many treatments and were on multiple medications, with great results. Some children’s EEGs had normalized and most had improved. (See “The modified Atkins diet” at http://www.ncbi.nlm.nih.gov/pubmed/19049584). Dr. Kosoff explained that most children who fail one drug therapy will most likely fail another. So, I thought about this diet for my son. After all, having a child on the spectrum, I was no stranger to diet modifications and the benefits that a diet can bring. We spoke with Dr. Kosoff about the diet and decided after a little deliberation to give the diet a try.
The modified Atkins diet is theorized to work like a ketogenic diet, but it is easier to implement and follow. Initially, the patient is restricted to fewer than 8-10 carbohydrates a day (first 8 weeks or so) and later no more than 15. We started the modified Atkins diet, and at first it was very difficult. So much so, that we decided to repeat our son’s EEG at 4 weeks instead of the recommended 6-8 weeks. To our delight, his EEG had completely normalized! In fact, his EEG results were so motivating that it became very easy to follow the diet. He has remained on the diet for almost 2 years with a normal EEG. Our son also made gains in comprehension and receptive language. Further, his hyperactivity completely subsided with the diet. We think this is because the diet eliminated almost all food additives. The Lancet reported that food additives contribute to hyperactivity in typical children. See “Food additives and hyperactive behaviour in 3-year-old and 8/9-year-old children in the community: a randomized, double-blinded, placebo-controlled trial.”(http://www.ncbi.nlm.nih.gov/pubmed/17825405)
Like ketogenic diets, the modified Atkins has side effects. The diet can stunt growth because of the lack of carbohydrates, but when the diet is stopped growth reverts to normal. We do routine cholesterol and urine ketones. He is followed closely by a neurologist and dietician.
My husband was encouraged to present a case report about our son at the American Clinical Neurophysiology Society Meeting, Orlando, March 2009. (Journal of Clinical Neurophysiology, Supp. Abst 114). Here is the website to learn more about the diet: http://www.atkinsforseizures.com/.