Needing some peace of mind!

Most epilepsy is not passed down in families. My daughter has an epilepsy they think is genetic that does not run in our family - i.e. even genetic epilepsies can show up because a hiccup that took place when the dna was split or when it was put back together ~ things can get duplicated, taken out or spliced together in ways that cause problems OR a minor change + other existing stuff taken together can cause problems OR some other way stuff can go wonky).You aren't alone, there are a lot of parents of children with epilepsy out there. Your local epilepsy foundation affiliate may even have a local parent support group or yearly conference that you might find really helpful. My local affiliate has their old conference talks on you tube. Check it out, visit (need to cut/paste as links aren't automatic in replies) https://www.youtube.com/user/EpilepsyFoundationNW  (note Epilepsy Foundation Northwest has since split out into three state affiliates).Most people do not find out why they have epilepsy. It's not unusual for people to start having tonic clonics and figure out that there were little seizures that were missed that lead up to tonic clonics. People don't catch most seizures or think they are something else. Even when you say she had an absence - there are different types of seizures that can look like absence, absence and complex partials (there's some new term for that) can look very similar as not all focal seizures have any associated movements (my daughter has had prolonged complex partials that look like absence but her memory is severely impacted for a time after but she also has a form of absence (atypical absence) that showed up years after the initial seizures).Epilepsy care should be overseen by a pediatric neurologist, get a referral to one (ideally at a pediatric hospital that treats epilepsy or look at us news and world report children's hospital rankings in neurosurgery and neurology). If it's not controlled within the first year, they should refer your child to a pediatric epileptologist. Talk to the neurologist about possible triggers and lifestyle changes (note some lifestyle changes parents impose are not helpful for a child's development and are more about treating the parent's anxiety, understand you need to avoid that, see a therapist for yourself if that is something needed for anxiety). Your followup for now might be having the pediatrician order any helpful/additional testing done in advance of seeing a neurologist.It's going to take some time to reach some new normal. You will reach some kind of new normal at some point, but that doesn't mean things will go back to before. Read up about seizure diagnosis, seizure types and seizure treatments on this site to get a framework to put yourself at ease about how things normally go. But after some time, know seizures might change. Generally the hardest part at first is dealing with how slowly everything takes. Epilepsy isn't a static condition, seizures can change over time in response to brain development, hormone changes, etc... It also takes time for more info about the type of epilepsy to fall into place. Knowing more about the epilepsy will help docs give you a better expectation on likely prognosis - some people (even adults) get treated for a few years but that's not true for everyone.

Hi Amy,Thank you for all this info and insight! She does see a pediatric neurologist, we seen her April 9th and again July 22nd. We also see a pediatrician who keeps an eye on her and does frequent weekly checkups as our neurologist is 3 hours away. I’ve done a ton of research and watched countless videos. I think I’m just scaring myself more with everything I’ve seen. I’m going to school to be an RN so the information isn’t new to me, I’m just completely beyond myself that this has happened to MY child. ☹️

Hi Ashley:I read your initial post and your response to Amy Jo and it's good to see you really being open about why this is really getting the best of you. It's natural to ponder certain things that many seem related or co-incidental. In your case you are in school to be an RN so I can imagine you are probably pondering how effective you can be with your daughter. That and the fact that you are probably feeling like you won't be able to live up to your full potential with your daughter as an as the mother who is an RN.My mom was a nurse when I was diagnosed at 4. What I can tell you is that I am glad she played the role of making sure she balanced being both. I say that because I got the chance to not be overly concerned every minute of everyday of what I should and should not do in terms of activity outside of my diagnosis. It is extremely important to make sure kids get the chance to exercise their own flexibility while growing up. If not they can walk away with the notion that they can't do much and that Epilepsy is their life.As a result my best advice to you is to find ways to balance your legitimate concerns and how protective you become of your daughter. Being overly protective is usually never in a kids favor. Also, being a mother, while it is quite unique, also means making sure you are balancing how you are managing things. After all, your daughter will need you. It's good that you are getting to know as much as you can about Epilepsy. That said, remind yourself that no one; medical or non-medical, can totally prevent a seizure. Hence, be very careful about how you are grading yourself. My mother allowed me a good bit of leverage, so to speak, as long as I was also taking my meds. She was also somewhat of an advocate when dealing with medical individuals who seemed a bit out of touch. I am sure Amy Jo is also that way with her daughter. But what's really important is making sure you are able to differentiate what you control and what you don't control. What you do control are things like how effective your neurologist is, meaning is he or she one who specializes in Epilepsy and one who listens; one who takes every patient in accordance with their specifics versus just treating every patient as one. After all, Epilepsy comes in many forms and as you can guess, every patient is unique in terms of where the seizures may be centered. The other thing is that medication requires being practical because what may work really well on one person may not on another. So, as you can see, the first steps with your daughter, in terms of medicine, will be a bit of trial and error process. That means try not to guess the outcome. Just take notes and if a particular medication doesn't work, make that known to the neurologist. For example, I am in the process of changing medication. As a result I made sure I spoke with my neurologist about two other names as backups just in case the one we are trying doesn't quite agree with me. So always have a backup plan. In terms of medication. There is a great site that can really give you details on medication in terms of side effects. They are broken down in percentages so you can get an idea of what is more probable and what is less probable, side effect wise. Just go to Medscape.com, a site I learnt about from reading an old posting by Amy Jo. Take it a step at a time Ashley. Step back when you see its overwhelming you a bit. After all, if you daughter sees her health overwhelming her mom, well, as you can tell, that can also overwhelm her. I mean, as kids we usually fuss about mom first. :)Don't force yourself to change. That's not being practical either. Just try to balance not overwhelming yourself. In terms of hospitals. If at some time in the future you feel like changing a great source is US News and World Report. They do a great job of rating hospitals in designated specialties. Here is the pediatric link.https://health.usnews.com/best-hospitals/pediatric-rankings/neurology-and-neurosurgeryBest Regards