Post by Renee on Jun 23, 2021 21:51:10 GMT
Hello everyone. I live in Oakville, ON Canada. I have a son with Lissencephaly that is now 17. The stories above are so much like mine. I had a normal pregnancy (he was my second child). He acted completely normal until about 3.5 months where he started to have infantile spasms. The pediatricians
said it was just gas. He was first treated at Sick Kids Hospital in Toronto. 17 years ago we felt like a number and no one would get back to you or
see him for months. He was soon accepted at McMaster Children's Hospital in Hamilton and I could not be more grateful. The physicians and staff treat
you like family. They respond within a day and have a plan in mind. My son grew out of infantile spasms around 4 years old and was treated with
different medications for tonic clonic and absent seizures. He seemed to have a honeymoon phase where the drugs would work for a short period of time and then the dose would have to be increased and second and third medications came on board. We finally started the Ketogenic Diet for epilepsy control. The team is amazing. Since he started this diet around 6 or 7 he only takes one epileptic medication and his seizures are mostly controlled by increases in fat content in the diet. My son's development is comparable to that of a 4-5 month old. He is so sweet and always happy to see you. He attends a high school in Oakville and they adore him. I have to admit when he was really young I was scared all the time. He always ended up in the hospital with pneumonia and later partially collapsed lungs but he's a trouper and still keeps going and loving life. Please feel free to email me at reneegraywilliamson@hotmail.com
said it was just gas. He was first treated at Sick Kids Hospital in Toronto. 17 years ago we felt like a number and no one would get back to you or
see him for months. He was soon accepted at McMaster Children's Hospital in Hamilton and I could not be more grateful. The physicians and staff treat
you like family. They respond within a day and have a plan in mind. My son grew out of infantile spasms around 4 years old and was treated with
different medications for tonic clonic and absent seizures. He seemed to have a honeymoon phase where the drugs would work for a short period of time and then the dose would have to be increased and second and third medications came on board. We finally started the Ketogenic Diet for epilepsy control. The team is amazing. Since he started this diet around 6 or 7 he only takes one epileptic medication and his seizures are mostly controlled by increases in fat content in the diet. My son's development is comparable to that of a 4-5 month old. He is so sweet and always happy to see you. He attends a high school in Oakville and they adore him. I have to admit when he was really young I was scared all the time. He always ended up in the hospital with pneumonia and later partially collapsed lungs but he's a trouper and still keeps going and loving life. Please feel free to email me at reneegraywilliamson@hotmail.com