Any parents out there with a child who has epilepsy??

My 10 month old just had another seizure timed at 4 minutes and 36 seconds last Monday while on a camping trip. He was 20 seconds away from us having to give the emergency booty medication. That is his 7th seizure. First seizure to happen after starting medications 4 months ago. I have so much I could write but don’t even know where to begin. I’m wondering if there is any parents of children with epilepsy support subreddits?? And if there isn’t how many parents would like to start one? Because this is way too hard we are literally walking on eggshells till his next seizure. It’s so hard because a normal baby cries when frustrated, if my baby cries it could turn to a seizure. Stress, fighting sleep, tiredness can all trigger a seizure. We went camping out of state with his dads side of the family and I told his neurologist I think it was a provoked seizure, he had a full day of travel, being outdoors by the river all the family around and he was fighting sleep for so long all day and finally at the end he started crying and boom seizure. It was literally a parents nightmare being camping no cell phone service for 20 minutes and the nearest hospital is an hour away. Well it didn’t fully ruin our trip other then we had to pay for a hotel the rest of the trip we planned to be camping and only went to the campsite for a couple hours a day. Along with us parents crying in fear for days… but having to pull ourselves together because we never get to visit his family. It’s so hard being a new parent, but it shouldn’t be this hard. What we’ve gone through and what we are going through is impossible to put into words without sobbing. I just don’t know what to do. We want to go to Disneyland for his first birthday but what if that’s too much for him???! What if it causes too much excitement and causes a seizure. I don’t want to live our lives in fear but we are … we also have a trip to Hawaii for a week in October coming up… which most people would be soo excited for and I can’t help but fear it will cause stress on him and have another seizure. Sorry I began to word vomit. I know there are people out there dealing with much harder or difficult disabilities. And I thank god every day my baby goes seizure free. I guess what I’m looking for, are people/parents who are dealing with the same situation I am. We feel so alone. via /r/Parenting https://ift.tt/2W0RxDp