Until Mathias was 4 years old he was like any children during play and in development. He learned to ride the bike, climb trees and loved social activities. Mathias has always been a joyful boy with humor and empathy. When he was 4 ½ years old, the kindergarten shared their concern, as they had observed him falling off the chair in a strange way. The kindergarten manager had a child with epilepsy and we were advised to look further into this. Shortly after, he was diagnosed with epilepsy.
At that point, any parents’ nightmare started. During the years Mathias has tried 9 different antiepileptic drugs. None gave positive results, and Mathias could at worst have up to 80 observed seizures a day. As parents we stopped counting seizures, and rather looked for good and bad periods. We customized Mathias’ and the family’s activities in line with this.
Upon several occasions we asked for the possibility of using ketogenic diet. The reply we got was that this treatment didn’t exist in Norway. In addition, the doctors meant that Mathias epileptic diagnose wasn’t the target group for ketogenic diet. Year after year, the doctors have given Mathias conventional medical treatment, as supported by the pharmacy industry, despite Mathias’ condition aggravating month by month, year after year. During this period we didn’t get in touch with any doctor with a different view, even though we continuously wanted alternative treatment for him.
We have tried homeopathy, acupuncture and searched the internet for alternative options. The treatments the doctors have offered during all these years are based on pills, with their comprehensive side effects, in addition to the numerous seizures a day. The result is a boy that has several years of fragmented experiences of his surroundings.
In 2006, Mathias got a fever illness that lasted three weeks. During that period he didn’t have a single epileptic seizure. As soon as he got well, the seizures returned. We told the doctors about this observation, but they didn’t respond to this at all. In 2008, a new treating doctor was assigned to Mathias. This doctor received all of Mathias medical history during all years, including his seizure free period. The doctor asked us if we knew about ketogenic diet, which we confirmed doing. The doctor continued that the same process occurs in the body during fasting as with ketogenic diet treatment. We immediately saw hope and felt expectation to this. Ketogenic diet as treatment was initialized in Norway about two years prior to this, and we applied for the start-up of Mathias’ treatment.
In April 2009 he started the ketogenic diet, and three days after the start-up his epileptic seizures disappeared. Can you imagine, up to 80 seizures a day disappearing just like that?
Today, four months later, Mathias is still free of seizures, and for us this is no less than a miracle. Several people warned us up front about the diet being demanding and causing big challenges for the family. However, what we experience today is nothing in comparison to what we have been struggling through earlier years. As parents, we have got a boy who is fully engaged with what happens around him. He asks questions and is interested with his surroundings. He obviously needs a lot of attention and stimuli, as he has put behind 9 years with several gaps in his development.
Sometimes my thoughts go back to all the years with the despair of having a sick son, without us being able to help him. In addition, we have had a medical system in Norway that didn’t offer ketogenic diet for children with treatment resistant epilepsy. I can’t comprehend how this could be an issue in a country like ours – ketogenic diet ought to be offered as a parallel treatment in our medical system. The consideration regarding whether or not there are resources enough in the family to go through this diet, ought to be left to the caregivers themselves.
Statements from several doctors are now put to shame – the diet works for our son. We are very relieved and happy about the result. We are grateful about meeting a doctor in 2008 who would listen to our story and was able to come up with alternative solutions.
Mathias is now 14 years old and handles the diet well. There are obviously several temptations, but he shows courage and has so far full self control. He realizes the consequences of breaking the diet.