So, I took quite a long hiatus from blogging this year. A lot has happened with my family and work life since my last post in January and honestly, I haven’t had time to think let alone write!
One of my last posts was about my son and his epilepsy. Well, after his seizure in January, we got him back on meds and things seemed okay. A few weeks later, we noticed he was having small episodes where he would stare off or drop his head and make a little grunting noise. Of course he did not do this for the pediatrician, so we were told to monitor him and get with our neurologist if they seemed to continue. Well, they did. He began having these multiple times a day and would fall if he was standing when they happened. We visited the neurologist and it was determined that he was having “petit mal’ seizures and staring seizures. We added a new medication (that of course tasted horrible) and they seemed to taper off a bit.
Early on the morning of Easter, our son woke up screaming and not feeling well. I decided to sleep on the couch with him in case he got sick. About 15 minutes later he went into a grand mal seizure. This seizure lasted 15 minutes which is not good and the longest one he has ever had. With any seizure over 5 minutes there is a chance that brain damage can occur. We of course called 911 and got him to the hospital. While we were in the ER he was completely out of it due to the length of the seizure. They gave him a higher does of medicine and sent us home after about 4 hours. The poor little guy was so out of it from the seizures that he barely wanted to look for Easter eggs. He found a few and we decided to all take a nap. I put him to bed and laid on the couch so I would be close enough to hear him if he needed anything. A few minutes later, I heard a thump. I ran into his bedroom and found him face down on the floor having yet another seizure. He came out of this one sooner, but we still decided to take him back to the ER. Once we were admitted back to the ER, he went on to have 2-3 more seizures. They had to give him a large does of anti-seizure medication to get the seizures to stop. This knocked him out pretty good, but seemed to stop the seizures. Since our neurologist was out of town, we made the decision to move to another hospital in town that had a pediatric neurologist on staff. We were admitted right away.
Once we were in the room, he had a couple more seizures so they continued to give him more meds intraveneously. My poor baby was so out of it, Easter of 2013 will never exist in his little memory. It will, however, remain one of the scariest days of my life. They next day he continued to have small seizures, mostily petit mal. We ended up staying in the peds unit for 7 days because they could not get the small seizures under control. They did not want to send him home for fear he would hurt himself if he had one while walking, running, or just being a 4 year old little boy. After the 7th day, with the advice of the doctors, we decided to be transferred to Riley Children’s Hospital in Indianapolis, Indiana. While he had slowly made it almost back to our energetic little boy, his eyes still showed signs of exhaustion caused by having multiple seizures throughout the day. We needed to know what was causing this to happen after he had done so well on medication before.
At Riley, a 48 hour EEG was done to see if they could determine the cause or type of seizures he was having. We stayed 2 days at Riley and they ended up adding one medication to his daily routine. We were up to 3 meds, 2 times a day. They sent us home even though he was continueing to having the small seizures, although they had tappered off a bit. That was the scariest 3 hour drive ever. I could hear him having the seizures as we drove home. I hated that even as he slept these episodes disrupted his little life. We got home and tried to get back to whatever “normal” was 10 days prior.
While we were at the hospital, our 7 year old daughter was thrown into this tornado of not know what was happening, not having her parents home, and having a not so great spring break. She was such a trooper though. I tear up even now just thinking about the effect this had on her as well. She too has epilepsy, but we have been so lucky that the meds have kept her seizure free for the last 6 years. Seeing her brother go through this is definitely a scary thing especially when she knows something similar could happen to her. She is an awesome girl and much stronger than I ever was at her age.
As we settled in with the new meds, the small seizures did continue to tapper off, but he was still having 3-5 a day (maybe more but I couldn’t count while I was sleeping:)). We scheduled a spinal tap to see if any of this was due to how he processes sugars. The test came back clear, but the doctor at Riley noticed that one of his acids was on the low end of normal. Wanting to try anything he could, he prescribed a vitamin that would be taken 2 times a day. We did this for a few weeks, but didn’t notice much difference. While we were doing this, the doctor was also trying to wean him off one medication that didn’t seem to be helping much. Well, one morning, about 3 days after we reduced the dose we found out it WAS doing something. Our son woke up at about 6:45am and came in the bathroom while I was getting ready for work. For the next 45 minutes he had at least 40 small seizures. They were coming 3 at a time. I quickly called the on-call doctor at Riley and they had me increase that medication back up to the previous dose. The seizures subsided at that point. They also had us start giving him the vitamin 3 times a day so the level of the medication would remain more consistant through his day. This has seemed to keep the small seizures from happening. As of today, we are almost 6 months seizure free!
I can’t believe it has been that long, as I can vividly remember that Easter day. I pray everyday that he continues to be seizure free and that at somepoint we can find the cause of them. We are in the process of weaning one of the medications, but this time we are doing it very slowly. He remembers being in the hospital and not liking it, but luckily he doesn’t remember all of the bad things that he went through. It is a challenge at times to get him to take his 4 medications, but we just remind him that they are keeping him healthy and out of the hospital. As he continues to grow, I know we will continue to tweak his meds and doses. I have faith in god that he will be okay and that we will be able to control his seizures. That being said, I still get a knot in my stomach if I hear a weird sound from his room at night or if he is being really quite for too long. As a parent, I don’t think we ever get over seeing our kids go through something like this. Resiliency is something that our kids are masters of! I love that he is able to play and not worry about having a seizure. I guess that is what parents are for. As frustrated as I get with his 5 year old antics, I would take that anyday compared to what the alternative is.