It all began with the attack of shingles across my abdomen when I was 12 in 2001. When I was 14 I started getting mild twitching of the abdominal muscles. From 2003 I had a rapid deterioration to episodes of jerking of the abdominal muscles resembling fits.
In 2004 I got a diagnosis of propriospinal myoclonus aged 15 by Great Ormond street professors.
I tried various treatments, lots of drugs often at supra maximal doses and had several long-term hospitalizations. Every summer it seemed I was in hospital trying to control this horrible condition. I lost out on the normal activities of teenage years – there are many family holidays I don’t even remember. Many of the drugs I tried had to be abandoned because of the severe side effects.
I had to leave boarding school in 2006 and missed a school year but was able to catch up at a fantastic local sixth form college where I was nurtured through A levels by a team of supportive staff. I achieved three good A levels and two AS levels as well as the Duke of Edinburgh award and other achievements. I had to dictate my A level exams to a teacher as the drugs had given me such a tremor I was barely able to hold a pen. However the condition continued to blight my life. At worst I was having two visits to A&E per week on a blue light by ambulance for iv drugs. Visits to A&E twice a day was not unheard of. I had stays in High Dependency Unit and Intensive Care and once stopped breathing because I had had so much medication. Eventually a Portacath had to be inserted in my chest as my veins were in such a terrible condition.
My outlook seemed bleak. I was badly affected by the drugs and taking a vast amount of buccal Midazolam to terminate these frequent attacks. I was not able to learn to drive, university would be almost impossible, I was unable to live alone or even go anywhere alone and I had the prospect of moving into residential care. I had already heard about the diet from a paediatric neurologist in approximately 2005 but I thought it would be impractical at boarding school and anyway it didn’t seem to fit as a treatment for my condition and had such a bad press for being so difficult to manage.
I decided to try it in 2011 with the help of a local dietitian. Matthew’s Friends Clinic was not operating at that time but we did get some advice. Unfortunately our ‘home tried’ diet had no real affect but I was able to obtain funding to attend Matthew’s Friends Ketogenic Therapies Clinic from a great GP and was the Clinics first patient in 2012. I had a proper assessment , the correct prescription and all the relevant tests. Now three years on, on the modified ketogenic diet I am living independently albeit with some PA support, off at least half of the drugs and reducing my dependence on these and increasing my activities. I have a worthwhile job working with autistic children, have studied with the Open University, I have a boyfriend and I am making big plans for the future. Oh, and the portacath is in a jar in the kitchen!
There is nothing to lose from trying to this diet and so much to gain. My seizures are so much better controlled I love all my foods and have lots of favourite treats to eat and drink. . Don’t let the weighing put you off, it comes naturally after a while. My only regret is that I didn’t try it sooner.