worried mum /confused son

Hello! I know this is scary. I, myself, am a 17 year old girl who has epilepsy. I was diagnosed when I was 10-12 (I don’t exactly remember) with photosensitivity epilepsy but after that one seizure I didn’t have one until the age of 15 and that’s when I was diagnosed with Grand mal seizures. Now, with the help of medication I only have absence seizures and tend to live a normal life. I know it’s scary to you as a parent, my parents still stress about me to this day and I don’t blame them. Just know that if it is epilepsy it’s not the end of the world. If your son needs support, there are countless amounts of people who are willing to listen in groups and forums such as here or, for example, the whisper app. I’d press pause on his driving licence, though. I don’t plan on getting mine anytime soon. Anyways, I wish you the best and I hope, if it was an epileptic seizure, that it won’t happen ever again. Stay strong for you and your son, because the best support is from family. 

I think what's frustrating to many is how slowly epilepsy diagnosis can seem (compared to other conditions) and how slowly they seem to go when starting treatment. Because there's no definitive tests that can always tell someone does or does not have epilepsy. Often seizures progress until one does have a serious seizure and people don't catch the smaller signs that happened but not everyone gets the progression. However not all seizures look the same and vacant episodes can be seizures. My child's seizures are mostly ones that no one can see outward signs of (bad tastes, bad smells, weird abdominal feelings, and pain in a certain spot are some of the partials she has had - the long staring is something we can catch, but can get missed). So many people don't know how varied seizures can be that there's a learning curve for each family on what's going on after one does have a diagnosis.Treatment can seem slow to start because while there is a known therapeutic range for each drug, every drug is different for everyone. Some drugs work for many people, but not everyone. And you don't want to over medicate as it increases the chances of unworkable side effects. Some people do great on a super low dose (lucky!), some need more than some docs will prescribe (been there once and it still only reduced seizures, nothing stopped them completely). For some people the drug dose needed to control seizures causes unworkable side effects. For some drugs taking a larger dose from the start or increasing the dose too fast can trigger life threatening problems. Setting one's expectations properly can help one not be as frustrated.

So the upside Michelle is that neurology has advanced significantly. Today neurologists who specialize in Epilepsy know a lot more than they did 10 years ago. What's important I finding a hospital with good ratings in neurology and neurosurgery. The not so upside? Well, it's what my neurosurgeon reminded me of post surgery. In essence it's that you have to have a lot of patience. And that's because every patient is unique. For example, some medication may work great on one person and not so great on another. The only way to find out is by being objective and not setting expectations. In essence, just observe how the meds work. For example, I am currently changing medication. I made sure, prior to doing so, that my neurologist listed two other meds just incase this one doesn't quite do the job. That said, I am not guessing how it will work. I am just observing. Your son is 17 so he is at that age where his interests are in so many other areas. As a result, he shouldn't feel like he can't accomplish anything. It's just that in order to figure out what's going to work best for him he has to be patent and practical as he works along with his neurologist, preferably one who specializes in Epilepsy. What helps is first finding a hospital with good ratings in neurology and neurosurgery. That's how they term the area. And a great source to finding such a hospital is US News and World Report. They do a great job at rating hospitals in various medical areas. In your case it's neurology and neurosurgery. Here is the link.https://health.usnews.com/best-hospitals/rankings/neurology-and-neurosurgeryI think Amy Jo phrased it best when she said; "Setting one's expectations properly can help one not be as frustrated." That was also my approach to surgery. And now it's my approach to changing medication. The point is; be practical. Sometimes that actually helps you realize you have more options than you think. For example, prior to surgery, we were successful in locating where the seizures were centered, hence what areas to remove. However, when we did the language mapping, well, the results in three areas didn't pass the test for surgery. After all, language and speech was very close and it was uncertain as to whether touching those areas was wise.That is when my neurosurgeon told me that we could repeat the language mapping, except during surgery, where he can actually see and touch the three areas while I spoke. I figured in a game of probability, all three areas couldn't fail the test so I told him I'm okay with repeating the test during surgery.As a result we were able to remove 2.5 of those 3 areas that failed the first language mapping test. And that's because I was awake during surgery answering questions as he saw and made contact with those three areas. Once he got the results, I was put to sleep again he was able to remove the areas that were already approved for surgery along with 2.5 of the 3 areas that initially failed the test. Now I am not suggesting surgery. I am just trying to show you that taking on Epilepsy requires contextualizing it. It's a neurological condition that can really cause many to panic. You are a mother and so, as my sister often told me, I can't quite imagine how certain things do feel to mothers because I don't have children. But what's also important Michelle is that you both; you and your son; try to minimize becoming too overwhelmed. And what helps with that is being practical about the fact that neurology has advanced significantly. Also, make sure his neurologist specializes in Epilepsy. And the site I posted above can come in handy in finding hospitals with neurologists who specialize in Epilepsy. Best Regards