I have seen my son have good days and some real tough days and I have seen him while he was experiencing a full grand mal seizure. It has been difficult to see him going through a full convulsive seizure and it really makes you realize how fragile our existence is. I often worry about my son’s safety especially when he is having a seizure or an autistic meltdown. As he experiences a seizure or meltdown he has no control of the situation and he is very vulnerable. If I am there when it is occurring my natural instinct is to protect him in the event he falls to the ground. It is scary because most grand mal seizures can result in head injuries if the victim is not protected during the seizure and they fall to the ground. The same can be said if the victim is experiencing a severe and violent autistic meltdown which I have seen my son experience as well. Both are rude awakenings because they can happen when you least expect it and they are very frightening to witness especially when the victim is your child.
Since seizures are unpredictable and can lead to serious injuries it is necessary that the child diagnosed with a seizure disorder or epilepsy be administered medicine to help bring the seizures under control and restore some sense of normalcy in the child’s life. Even when a child is prescribed medication it is still possible for the child to still have seizures. We have learned that when our son has a grand mal seizure it takes a lot out of him and it is quite traumatic. He usually sleeps immediately following the seizure and has slept for several hours following one.
I still remember the very first seizure our son had which was not witnessed and was discovered after the fact. It was my wife’s mother who was concerned for our son when he seemed to be a bit quiet. She peeked into his room and saw he had fallen off the bed and was unconscious and losing color. My wife and I were both working at the time and she was home with Matthew and she picked him up and brought him back. If she had not checked in on him and took quick action in reviving him it could have resulted in him suffering brain injury or even worse. Our son was blessed that his grandma took swift action and literally saved his life.
As parents it is very difficult sending our son off to school on occasion knowing in the back of our minds that seizures and meltdowns can happen at anytime and without warning. We have to have faith and hope that his day will go according to plan and he will be seizure free and not be prone to having a meltdown. We see that our son has his medication in the morning before he leaves for school and at night before he goes to sleep. Currently he is taking depakote, risperdol and daytrana to help control these conditions.
With concern for our son’s safety it has been suggested that we look into our son being considered for eligibility to have a seizure response dog be by his side at all times to help protect him in the event he does encounter a seizure or meltdown. I personally feel it would be great if he was eligible and considered for one which would give us peace of mind. The medication seems to help but in some cases we worry about the potential side effects which we are starting to notice with his prescription of risperdol which is apparently causing our son to gain weight. There seems to be both pros and cons in trying to find the appropriate medication to treat our son for his autism and epilepsy diagnosis. We rely on the doctor’s and put all our faith and trust in their recommendation but we also feel we need to question the use of the medication if the potential side effects seems to outweigh the medical benefit.
We realize we have to be patient with the use of the medication and we have to allow time for our son’s body to adapt but we also know that if the medication is causing him to develop excessive weight gain and to be self conscious then it is necessary to bring it to his doctor’s attention and see if there is a suitable alternative that would address his needs and not cause unwanted side effects.
It is a constant worry that our son is getting the proper medications and that he is progressing and not suffering in the process. We always pray and take one day at a time and always maintain optimism and trust. We have to for our son’s sake.
We will always make sure we are doing all we can to get our son the proper medical care he needs and will have to deal with insurance and other issues one step at a time.
Our son is very brave for all he has to deal with and we are always amazed how well he seems to cope and deal with his situation. We are always inspired by his courage.
Love you Matty!
Mom & Dad
Edward D. Iannielli III