We received some really great news recently, and this news made me realize I should share a bit about this topic. So here we go… my middle guy, Ryder, has epilepsy.
Let’s start at the beginning. Just before heading into junior Kindergarten we noticed Ryder sometimes staring off at nothing for a few seconds, his eyes would kind of stare up and flutter just a bit. Because Ryder was always a little anxious about new things, change, and all that goes with it, we thought this was more due to the anxiousness surrounding starting school. We began to notice it more and more and one day my mom said “I think he’s having seizures”. Heart. Stop. Moment.
So I did what any mom would do, I turned to the internet and asked Google. I learned that what it appeared he was having were called absence seizures – all of his signs were basically textbook to what I found on the web. When we finally realized that this could be what was happening, we began to notice and count them. He was oftentimes having over 20 of these absence seizures daily, and those were the ones we saw. We got him into the doctor and they scheduled an EEG. During the EEG, Ryder basically slept, but they also had him perform some seizure inducing activities so that they could monitor the brain activity during the seizures. As a mom, this was soooo hard to watch! He had to do a hyperventilation test which basically involves blowing on a pinwheel constantly for 5 minutes. 5 minutes is a really long time to breathe and blow on a pinwheel, a normal person would almost pass out during this test. During that 5 minutes, I watched my little 6 year old have over 30 absence seizures. It was HORRIBLE! Later on, Ryder also had an MRI to make sure that nothing else was going on in his brain, and thank God, everything on the MRI was totally fine.
So we began the trial and error period of medicine. All of which had horrific side effects. My super awesome pharmacist told me not to Google the side effects because they weren’t good, but then also said that if it were his child, this is the medicine he’d want them on, that calmed my mama heart a bit. Through this process Ryder also began seeing a pediatric neurologist, and I was very happy and hopeful to hear that these types of seizures are generally not a forever thing. Oftentimes kids will grow out of them and the seizures will not follow them into adulthood. Praise Jesus! Back to the meds - after about a year we finally found the correct medicine for Ryder man and he has been seizure free ever since!
This brings me to the awesome news we received a few weeks ago! Because Ryder has been seizure free for 2 years, without having any breakthrough seizures, his Doctor decided we could do another EEG, and if nothing was found, we could begin weaning off the meds! He may have outgrown the seizures! So a few weeks ago, Ryder had his EEG about 3 years after his first one. Once again he had to perform the 5 minute hyperventilation test and he didn’t have a single seizure! He did look like he was about to pass out from not being able to breathe, but no seizures! After the EEG, we met with his Doctor who had looked at the reports and found NO abnormal brain activity! Seriously, jumping up and down excited and happy at this point! Because no abnormalities were seen, Ryder gets to begin the process of weaning off of his meds. Hooray! As we wean, we continue to pray that there are no more seizures. If he happens to begin to have them again, it means the medicine was doing it’s job and we will need to stick with it for a while longer.
We are a few weeks into the weaning process and so far so good, no seizures! I share all of this with you today in case you are dealing with something similar. I want you to know that you are not alone, and to always advocate for your health and the health of your children.
If you have questions or would like to talk more about this or anything else, please reach out. I sincerely mean that. We need support from others; we were not made to go through hard things alone. I am here for you and so are so many others!
Stay wild, my beautiful friend!
xoxo - Chrystal