Just as we start to think that this is a thing from the past and we'd possibly be in the clear...Caleb has another seizure. It was Monday June 28th and we were at Costco with Kristen, Chase & Gigi. We just sat down to eat and I notice Caleb starting to act weird. I picked him up and tried to get him to stand on my legs and he can’t. It was almost like I had sat him in a chair and spun him around a million times and tried to get him to stand and act normal. This seizure was a little different than the other and definitely lasted longer…about 3min. Luckily for me Mission Hospital was literally street lights away. So we all rushed to the car and headed over to the ER. By the time we had arrived he had stopped seizuring and was starting to act normal. They got us back within 5 minutes of arriving and took his vitals. All normal. Then was the long wait to see the ER Doctor. We finally got out of the ER around 9:30pm. We talked with our Neurologist Dr on the phone and our plan was to schedule an appointment with him that week to discuss meds….MEDS??? WHAT???
So now it’s Wednesday 6/30 and we’re meeting with our Neurologist Dr. McIntosh. Josh and I went to this appointment pretty certain we were not going to start Caleb on Meds, that wasn’t an option we were ready for and knowing his EEG was normal we didn’t think our son had epilepsy. I had been frantically looking up anything and everything I could online, trying to find another reason why Caleb had seizures and/or an “episode”. Well after discussing what Caleb was doing during his last “episode”, our Dr looked at us and said Caleb has now had two unprovoked seizures which classifies him as having epilepsy. My heart sank. The Dr explained that right now we have 2 good things on our side.
1.Caleb’s EEG was normal
2. Caleb is learning and developing normal
So now we just need his MRI to be normal and there’s a 70% chance (our Dr thinks possibly higher) that Caleb will outgrow his Epilepsy. Caleb has Idiopathic Focal Epilepsy and Complex Partial Seizures.
We started him on his meds that night. After hearing that these little seizure that Caleb currently has are harmless, but when and if he has one that lasts longer than 20 minutes, those can cause brain damage. Our Dr ensured us that the medication is safe and will have little/to no side effects on him. We are starting him on it slowly and will gradually bring him up to the correct dosage in a month’s time. After hearing that seizures that last longer than 20 min can cause brain damage…I looked at Josh and said “what if he has one while we are sleeping and don’t know it?”. The Dr said if it was his own kid he would start her on the medication because he wouldn’t want to take the chance. He said we have a perfectly healthy and normal kid right now. It’s not worth taking a chance on not starting him on the medication and hoping his seizures don’t last long enough to cause brain damage. He said he would hate to have this conversation with us in the ICU and having to tell us our kid now has brain damage.
Caleb has been on the medication for almost a week, granted he’s only getting a ½ tab at night right now, but we have not noticed any changes. That is my biggest fear of having a medication change him or make him act or seem different. I’m being a paranoid mom and still semi in denial and I am constantly asking Josh if he seems okay, or is he doing things differently and Josh keeps ensuring me that he’s fine and acting normal. I just can’t help my mind, it’s going a million miles a minute and I just lay there at night listening to the monitor wondering and worrying if everything is alright. AGH!! I know it’s in God’s hands and he will take care of my little man.
Please keep our guy in your prayers, tomorrow is his MRI and I’m already freaking out about having him sedated. I’ll keep you all posted on the results.
