November is Epilepsy Awareness Month and being a parent to a son with epilepsy, I thought it would be great to spread a little awareness to all the other parents out there! I am sure some of you reading this also have a child with epilepsy and so for you, I will list some amazing resources that are out there for your child and for those of you who are lucky enough not to be coping with this disorder, I will give you some information and signs to look for in your children as sometimes, epilepsy can go undiagnosed for years!
The Epilepsy Foundation of America serves the entire country and there are local affiliates all over the country. Many of them have free camps and other resources for children with epilepsy! Make sure to check out your local affiliate to see their local opportunities for you and your family. Find your local affiliate here.
Now for those of you who know little to nothing about epilepsy…There are 3 million people in the United States living with epilepsy and another 200,000 will be diagnosed this year. It affects more than 300,000 children under the age of 18 and 30% of people with epilepsy cannot find any level of control with medicine. So out of that 3 million people, 900 thousand are without relief, over 90 thousand of them being children. Those numbers are staggering considering we never as a community hear anything about Epilepsy.
Now for those of you who know little to nothing about epilepsy…There are 3 million people in the United States living with epilepsy and another 200,000 will be diagnosed this year. It affects more than 300,000 children under the age of 18 and 30% of people with epilepsy cannot find any level of control with medicine. So out of that 3 million people, 900 thousand are without relief, over 90 thousand of them being children. Those numbers are staggering considering we never as a community hear anything about Epilepsy.
There are many different types of epilepsy and many different types of seizures. Not all seizures are what you would expect, some being all but impossible to detect. One of these seizure types is called Absence seizures. During an absence seizure, a child may look as if they are just staring off into space while daydreaming. Their lips may smack or they might make small movements with their arms or hands, you may notice some eyelid fluttering or chewing motions, but that is it. The only way to tell if your child is having an absence seizure or just spacing off is to call their name and check to see that they respond. Absence seizures typically last under 30 seconds so you may call their name a few times and when they finally look you think they are fine, but do not be fooled.
Another type of seizure that goes undiagnosed a lot is the Myoclonic seizure. Many of us have experience that sudden jerk when we are falling asleep or when someone jumps out unexpectedly and scares us, these seizures are similar to those. As adults, if they happen to us, we know it isn’t normal and can get it checked out, but as parents, we see our kids jerk and spill milk and we tell them to be careful, we see them throw something suddenly and say that throwing is not allowed in the house, completely unaware that these ‘jerks’ are not purposeful. These seizures are so quick that you won’t even notice an impaired consciousness.
If you do see your child have a seizure, stay calm. Most children who have a seizure will never have another one and of those children that do, most of them will outgrow their condition. The majority of children with epilepsy are otherwise perfectly healthy and 70-80% of them can control their condition completely with the help of medicines which then allows them to live their lives free from limitations. Epilepsy is not as scary as it sounds.
I hope I was able to help some of you and that all of you learned something new today. The color for epilepsy is purple and this month I am committed to wearing it each and every day to show my support for my son. Feel free to join me and also wear as much purple as you can, paint your nails purple, tie a ribbon on your mailbox, do your part and spread awareness!
