1) What is your connection to epilepsy/seizures? My son who is now 9 1/2 has epilepsy. Since we found out I have met so many others that I have connected with.
2) Tell us a little bit about your journey. Right before 7 am Christmas morning 2013 I heard one of my children get up and head to my room, my thought “they are going to tell me Santa has come”. Much to my surprise my older son says “something is wrong with River hurry”. We go back to their room and River is having a grand mal seizure. Wow, that was not a great Christmas morning wake up. We comforted him and when he stopped seizing and woke up he had no idea what just happened. One arm felt like it didn’t work well. We all went back into our bed and relaxed for a bit and assured him that we would all wait and make sure he was okay before we went to see what Santa brought.
To rewind a minute…About 1 /12 years prior I walked by his room and thought he was having a nightmare and when I went to tell him it was okay he did not respond to me, I thought he might be having a seizure. By the time my husband got in he had stopped. So I questioned myself, was I wrong, was I crazy? We went to doc and eplained what happen and she said sounded like a seizure, but treated it like a cold, no big deal. I wish I would have looked into it more then.
Back to Christmas morning…I kept wondering how many has he had that we missed? My older son only caught it becasue he happened to be awake and they now shared a room. What am I going to do now? Why didn’t I insist more test or look more into it after the first one?
The day after Christmas we went to the pedicatrician (different one that first time) she was very proactive, sent an urgent referal to the Children’s Hosptial (about 6 hours away) for River to see a neruo and get and EEG and MRI.
For the next month I did not sleep at all, watched baby video monitor all night long in fear I would miss one. Our first neuro wanted to medicate, I wanted to know how often he was having them before we medicated. First Neuro was totally against monitors, needless to say we did not see him again. We found out about CHF and were able to get an Emfit monitor and that saved us. I was able to sleep. The monitor notified us of seizures, we were able to go in and turn him on his side when he was vomiting saliva, which saved his life. After he had a few within a few weeks we decided to try meds. He was on meds and has been seizure free for 22 months. He took his last dose of meds one week ago and we hope and pray he stays seizure free.
3) What is a typical day like for you? Since River’s seizures were under control with meds our days were pretty “normal”. The worry of when next one might come is still always there. He is not allowed to take a bath alone, only shower. He plays basketball, baseball, BMX racing, skateboards, wakeboards, knee boards, has wrestled and runs around like a 9 year old boy. He must wear a life jacket at the lake even though he knows how to swim, but he is a great sport about it and so are all the other children we go with, so that is great. We try to keep him on a good bedtime schedule which can be hard while camping and everyone gets to stay up late, but we make it all work out. He does get to spend the night at a couple friends houses with his monitor in tow and at grandparents. We try our best to not let Epeilepsy slow us down.
4) What support do you have?? We have a lot of support from family and friends and from CHF and members of the CHF group. I am so thankful for all the support we have.
5) What would you like others to know? I think docs should give all types of options to patienets inclucding CBD, I wish I would have known about CBD before we started my son on meds. I would love for schools to have epilepsy awareness assemblies so kids with epilepsy feel more comfortable at school. I do these assemblies at both of my sons schools once a year. Go with your gut, if you think you or your child needs more tests or want more information demand it!!! I would like for it to become a norm for insurances to cover the monitors. Everyone needs to know they are not alone, find a support group. I am in the process of starting a support group in my area beacause we don’t have one within 4 hours of us that I know of.
6) What has or would make a difference for you? Our Emfit and Samialert have made a world of difference for us!!!! I was not getting sleep before we got ours and still working 50 plus hours a week, with 3 children of my own ages 2, 7 and 9. I was grumpy, disconnected from my husband becasue as soon as my son went to bed I just stared at a baby video monitor until he woke. The support CHF and Julie gave me was amaizing. Once we got our monitor, I slept much better. Not that I did not worry, but at least I slept.