Many of the recommended drugs make the epilepsy worse’. It metamorphoses, it thows lots of different seizures at you.it is difficult to kill. More experienced MAE parents said great, ‘you need hit this BEAST hard and fast. We were so excited, Harry was going to be seen and may be treated with the recommended treatment for MAE. The reply was positive ‘ Yes, I will see this man with the blessing of you local paediatric team’. Our GP drafted a letter in March 2004 to Dr Helen Cross who is leading the study (not 3 months into Harry’s illness), requesting that, based on this information, she take a look at Harry. We began a second box file was then started on the ketogenic diet as a treatment for epilepsy! We knew from looking at the Gt Ormond Street Hospital Web site that a programme of research was underway looking at the efficacy of 2 types of ketogenic diet in controlling difficult to treat epilepsies. Again and again we were getting the same message… how could we ignore it? Another little girl with MAE, her mum told the same story. A little boy in Cambridge UK, same MAE diagnosis, same symptoms, (same neurologist), his daddy had tried the ketogenic diet which gained him seizure freedom. “Try the ketogenic diet” it has great success rates even where drugs fail for the treatment of MAE/Doose. Furthermore, this information was supported by the real life experiences of many other Doose parents who we had contacted via an international web support group () who reiterated the information based on personal experiences with their children. In this study the ‘ketogenic diet’ came out as number one best treatment for MAE. Never being one to hide one’s head in the sand, I had clutched in my hand, a pile of scientific research papers, including of a significant retrospective clinical study in Japan, which looked at MAE outcomes and prognosis and gave information on the most efficacious treatment. Sick with worry by now, but armed with information, we consulted our GP to discuss the best treatment for Harry. We couldn’t help but trawl through the scientific literature. Harry was diagnosed pretty rapidly with this difficult to treat idiopathic generalised epilepsy and we immediately searched for help and information any place we could. An MRI scan at Luton and Dunstable hospital (L&D) came back clear showing no physical brain abnormality. Harry started the journey that is a relatively rare syndrome called Myoclonic Astatic Epilepsy (MAE) or Doose syndrome (1 in 200 childhood epilepsies). THE DIAGNOSIS AND SEARCHING FOR THE BEST TREATMENT Harry suffered many lacerations to his chin, head and cheeks with the falls and lost his front teeth at age 3. By May the myoclonic jerks became so severe that they would throw him to the ground. At first, every morning as he woke, and then throughout the day. By March hundreds of myoclonic jerks set in alongside the increasingly numerous tonic clonics. He was initially treated with epilim and ethosuximide with increasing doses. Harry started with tonic clonic seizures which increase in their frequency over the first few months. My blood ran cold and the nightmare began. ’Harry has dropped to the ground and is having some sort of seizure’.
All of the kiddies arrived and we were at the door greeting them. We organised a birthday party for him at a local children’s farm. On his 3rd birthday our entire world was tipped upside down. He was ahead of average in his physical self, interaction and ability to draw etc. He suffered many ear infections as a toddler and thankfully had grommets inserted at 2 years, improving his hearing considerably allowing his speech to develop. Our happy and beautiful little man grew rapidly and developed normally. Harry was born a healthy 9lb 12oz boy on. Ketogenic Mealplanner – Electronic Ketogenic Manager (EKM).Constipation & Ketogenic Dietary Therapies.Ketogenic Therapy and Anti-Epileptic Medications.Hospital Guidance for those on Ketogenic Therapy.Classical & MCT Ketogenic Diets (Traditional Diets).Introduction and preparation to Medical Ketogenic Dietary Therapies for Adults.Introduction and preparation to Medical Ketogenic Dietary Therapies for Children.Chapter 3 – Public Health Collaboration.Chapter 1 – Eating For Health and Wellbeing.International Neurological Ketogenic Society (INKS).Ketogenic Dietary Therapies and Pregnancy.KetoCollege Training programmes for Medical Professionals.
0 kommentar(er)
