Yesterday morning poor little Levi could hardly stay awake during his breakfast, and went right back to sleep as soon as he was done. I had noticed that he'd slept deeply through the night, but since he was awake to eat I wasn't really concerned. He typically takes a nap right after breakfast, so that was not startling, either. He had been running a low grade fever, so I decided to cancel his 9 month checkup at the dr.'s office, where he was also going to receive the 6 month immunizations he is overdue for. I couldn't reach the office, and since my appointment was at 9, I decided to take him in. Thank God I did! When I got to there, I realized that Levi did not wake up when I dressed him, and I could not get him to wake up. Dr. Jones had a very difficult time waking him as well, but she finally brought him around. They checked his pulse ox, which was fine, but his heart rate had dropped to 80. She called the ambulance. It was deja vu! Literally, this is almost exactly what happened last time. I was shook up, of course, but at least it wasn't complete shock like it had been in December. Dr. Jones suspected that Levi had had a severe seizure and was wiped out from it.
We were sent to St. Anthony's to make sure he was stabilized. I made it very clear that we needed to transfer to Cardinal Glennon as soon as possible. The paramedic was great, he assured me he'd get us there as soon as possible. The staff at St. Anthony's were great as well. All the nurses were charmed by Levi, and his adorable curls. Very soon we were screaming down the road to Cardinal Glennon, where we ended up sitting in er for many hours. Thank goodness our family showed up to keep us company and the waiting wasn't so bad. Levi had been awake and stable for quite a while by that point, so they ran some tests and we took turns cuddling him. We learned that the CT scan of his head (they always do a shunt series when we show up in er, no matter why we are there) was improved from the last scan months ago. Yay! The shunt adjustment back in June really made a difference! Our favorite neurologist, Dr. Chrusciel, came to see us, and she said they believe his meds are to blame for the lethargy. She said if Banzel was going to work, it would have already, and in fact she thinks it has made the seizures worse. So we are weaning that off beginning today. His phenobarbital levels are a bit high, so we are taking him from 9mls once a day down to 8. She then mentioned that we had a couple options to explore. The first is the ketogenic diet. Oh, I dreaded the day that would be brought up!!! It's a crazy diet where Levi would eat only certain formula, at certain times of the day, in certain amounts. If he's hungry, he can't eat until it's time. If he's not hungry when he's supposed to eat, it must be forced down anyway. Any bit of spitting up and you have to replace what came out. It's very strict! I've read two blogs of children who tried it, it didn't work, and took months. We agreed a while back that the diet would be a last resort for us. Many children receive seizure freedom from it, but many don't. So we chose the other option, Lamictal. It is also a very slow process, and will take a couple months to reach the goal dose, because it must be increased very slowly. We will start it hopefully today, and increase once every two weeks.
We had another scare as we were putting Levi into the car to go home. He had fallen asleep, and when we put him in the carseat, he again did not wake up or respond. It took us a couple minutes of talking, patting, shaking to get him to open his eyes. Once he did he was awake all the way home. Thankfully we have not had any more episodes like that.
Please keep Levi in your prayers. Please pray that Lamictal is the drug that's going to STOP these seizures! There is also a serious side effect which involves a rash. Please pray that Levi does not have this problem! I can't tell you how tired I am of counting seizures and watching him suffer through so many every day. He is currently having anywhere from 60-80 a day! Thank you so much for your prayers!