Lilah L’s Story

Before Lilah had her first seizure I didn't grasp the serous nature of epilepsy. I knew that falling from seizures could be harmful, embarrassing but thought there was more emotional damage than anything else. I thought that seizures were easily controlled by medication. I definitely did not understand how seizures could alter development, rip the light out of a child’s eyes and plunge families into fearful dark days. But then our beautiful, talkative little girl, Lilah, had her first seizure, a tonic clonic lasting about 5 minutes on December 10, 2009 when she was 3 1/2 yes old.

Because the seizure was with a fever her pediatrician quickly dismissed it as "normal" and we readily accepted this. Looking back now, we know that Lilah continued to have periodic seizures including some myoclonic and atonic (we thought she was being clumsy) and repeated “night terrors” that we now understand were tonic clonic seizures. These went undetected however until March 28 2010, our son Oliver's 2nd birthday, when Lilah's seizures exploded with tonic clonic, myocolonic, atonic, and absence seizures. We quickly got Lilah in for an MRI and EEG and she was placed on her first anti seizure medication, Depakote. We were told that Lilah probably had absence epilepsy, that seizures don't do damage and that Lilah couldn't be hurt by them. But soon Lilah was having clusters of tonic clonic seizures (among other seizure types) that we couldn't stop with emergency medication and we watched as our daughter start to quickly slip away from us. We traveled from Alaska to Boston Children’s Hospital where we first heard the words: “Doose Syndrome”. I remember how frightened we were when we found this web site and read up on it, but at the same time, I found hope that there were children who had fought and won. While in Boston Lilah started to deteriorate rapidly with multiple ER and ICU stays both in Boston and Maine (where we had family). We ended up unable to return to Alaska and stayed in New England for 4 weeks longer than we intended. During this time, Lilah went from 1 medication to 3 (Depakote, Zonegran, Klonipin), plus repeated (almost daily) use of Diastat. We eventually returned home but Lilah continued to spiral. Her speech became limited, halting, unintelligible. She had difficulties maintaining her balance and she would stop walking during bad stretches. Our verbally advanced outgoing girl became a shadow of her former self. Another medication, Keppra, was added but not only were the meds not controlling her seizures but Lilah was getting worse; we were spending days in the Ped ICU several times a month trying to stop her clusters.

We had discussed dietary therapy several times during the previous months but we were discouraged by our local neuro to start because of the severity and “extreme” nature of the diet. We were told that it was too socially isolating; maybe so, but so were seizures and frequent hospitalizations and if Lilah had Doose Syndrome than the diet had a far greater chance to succeed where the medications had not.

So on July 1st, 2010, 3 months after her seizures escalated and 6 months after her first seizure, Lilah started the Ketogenic Diet. Two weeks later Lilah had her last cluster of tonic clonic seizures. As the diet started working, Lilah became Lilah again. Within days, Lilah's fog began to clear, her speech improved, she regained strength and movement. We have since taken Lilah to Children’s Memorial Hospital in Chicago where her MAE (Doose Syndrome) diagnosis was confirmed. Her neurologist believes the diet therapy is the best treatment for MAE and had us start weaning her medications immediately. As of October 5, 2011, Lilah is AED medication free and doing great!

Today Lilah is happily learning, regaining many of the skills that she lost, and enjoying preschool; she is a happy, sweet and sharp little girl who enjoys playing with her little brother, hiking, skiing, and learning how to ride a bike. It amazes us how committed she is to keeping herself healthy and seizure free. We still battle with the gaps leftover from seizures but we are so hopeful that Lilah is going to beat Doose and continue to grow and flourish.