At the tender age of three, Addy had her first seizure. We thought she was choking as she lay on the floor making gurgling noises. After the EMT’s arrived and we explained what happened they mentioned it might have been a seizure and we were transferred to the ER. The next few months would be a nightmare. Addy manifested 4 different types of seizures which included myoclonic, astatic, absence and tonic clonic. Ironically we had just replaced the carpeting in our home with hardwood floors. Her injuries were numerous as she repeatedly fell on those floors and seized. It’s hard to see your child covered in bruises, lacerations and with permanent teeth knocked loose. It became necessary to strap her into her chair during meals and accompany her to the toilet or when using the stairs. There is no known cause for her disorder and we were told she may outgrow it, however she continues to decline. Her doctor has diagnosed her with a combination of two different syndromes which are Doose and Lennox Gastaut. They are both difficult to control and we are constantly changing medications and treatments to try and stop her seizures. Currently Addy is on three different medications. Her daytime seizures are controlled for now but we have never had control of her nocturnal seizures. The side effects of these medications have caused developmental delays and learning disabilities as well as behavioral problems. A secondary diagnosis of Sensory Processing Disorder has also recently popped up. We have tried all kinds of alternative treatment including chiropractic, homeopathic, acupressure, hypnotherapy, occupational therapy and brain-linking. Our next course of action will probably be the Ketogenic diet.
Through it all Addy constantly has a smile on her face which is a reminder to me of how valiant her spirit is. She is now seven years old and in the second grade. She attends a tumbling and clogging class every week and has a special connection with animals. We are in the process of applying for a companion/seizure dog for her. The hardest thing for me as her mother is to continually watch my daughter slip away. I will never give up hope and I will try every thing in my power to have her be a normal kid again and come back to me.