This weekend we had a very evil thing return to Beau's life; the Seizure Monster. I refer to it as that because like anyone else, we hate seizures and I think they're monsters. In April we had an inpatient stay at the University of Iowa Children's Hospital to have a video EEG done. His seizures weren't being completely controlled by the Keppra alone (and he was on the max dose for his weight) so they wanted to do a video EEG to see what they could catch and then determine whether or not another drug needed to be added. For any of you that have been through that, it isn't fun for a child (or an adult for that matter). You are stuck in a small room and Beau was connected to a TON of wires and a long cord connected to the wall. You have to stay in the room and within the view of the video camera. It makes for a long several days. After a couple days they determined there was a lot of abnormal electrical activity, especially during sleep (which wasn't a huge surprise), so they added Tegretol to the regimen. We hated adding another drug to his system, but clearly one wasn't doing enough to control the seizures. Below are pictures from his EEG in April.
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| Beau, un-happy about being hooked up! |
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| Worn out after getting all hooked up. |
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| Playing in the room with all of his "baggage". |
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| Looking happy even with all the wires and camera. |
Since then, things had been going well for Beau with regard to seizures. Every night is always a scary time because his seizures happen at sleep but you start to get a little more relaxed and then BAM! Saturday night, I was home alone with Beau. Andy was on his way home from southern Iowa, but he was still over an hour away. Beau fell asleep at 9 PM. He hadn't slept real great the night before and his nap on Saturday was only an hour - some days he'll sleep almost 3 hours. As I look back, he's done that in the past prior to having a big seizure. He and I laid down on the couch together as is our routine, so that if anything happens I'm right there to catch it. Fifteen minutes into sleep as he's laying beside me, I feel a slight jerking hitting my side. I look down and it's his left hand opening and closing his fist and jerking slightly. I didn't get too worried because occasionally he will have arm or leg jerks that are benign and only last about a minute or so and then don't result in a full on seizure. As I refer to in an earlier post, THIS is why I am scared of sleep. If I hadn't been laying right beside him I never would have felt the seizure. He is so quiet with the chewing and drooling and limited body movement that it would be almost impossible to hear. It's just plain scary. I held his hand and rubbed his arm talking to him calmly and telling him he was OK. After a minute the jerking seemed to get worse and I elevated him up on the pillow and he opened his eyes. His eyes were gazing to the right and he wasn't "with" me at all. The chewing and excessive drooling quickly began. It was like a bad flashback to his early seizures - ones that we hadn't seen in over a year and a half. He was having a partial complex seizure. I ran and grabbed his emergency drug from his bag and quickly got the medication drawn up. We give him Versed, intranasally. It's drawn up from a vile with a needle and syringe and then we attach a nasal adapter to the syringe and squirt the Versed equally into both nostrils. I gave the medication about 3 minutes in as instructed by the neurologist and held my baby and talked to him while the drug took effect. It's a nasty drug so I'm glad we don't have to give it very often, but I have to be grateful for it because this time it slowed the seizure and stopped it. It went on for about another minute after giving the drug. I held his limp body in my arms as he chewed, drooled, attempted to vomit and gag and watched his blank eyes roll around. The drug eventually took effect and the goofy effects of the drug kicked in. He started to come back to the moment and he made a cooing sound and then smiled at me. It was then that I could tell that his left side of his body was paralyzed as I got the half smile and his arm hung limp. He couldn't hold his head up so I sat with him in the rocker and sang to him our song; "You are my Sunshine". The adrenaline was wearing off and I sat holding him tight and then started to cry. I felt like a toddler that just wanted to get down on the floor and kick my legs and pound my fists, throw a temper tantrum and scream, "why?". It just isn't fair for children or even adults for that matter, to have to go through all this crap! Why, at 3 1/2 years of age should he have to have several specialized doctors, needle pokes, medical tests, seizures, learning disabilities? It just saddens me, but the greatest thing is that Beau doesn't seem to mind. He is such a happy child. Sure, he gets frustrated with the inability to communicate but he comes up with his own ways to express what he needs non-verbally. Sure, he gets angry and upset that he falls a lot and can't run with the other kids, but he continually picks himself up off the ground and keeps on walking.
I need to take a lesson from Beau and not let this "bump in the road" get me down. It certainly hasn't gotten him down. I am still concerned as 2 drugs aren't controlling the seizures. I contacted the neurologist's office and spoke with the nurse to tell her about the seizure and to order some more rescue medication. I let her know we didn't want to up the Tegretol at this point in time. We'll see what happens in the next few weeks and then go from there. We see our neurologist at the end of August, so that will be a good time to discuss future options. I just continue to pray that the "seizure monster" stays away and that we have uneventful nights for many weeks to come. The pictures below were taken yesterday, the day after his nasty seizure - look at how happy he is!
