On Wednesday, Emily had her 2 year checkup with her pediatrician. Right before we left, Mike fed her lunch and then left her lying on the couch for a couple of minutes while he got some stuff together to go. When he went back into the living room, her arms were up in the air, her body was stiff and she had saliva all over her mouth. It is not uncommon for her to choke on her saliva from time to time, so we didn’t really think anything of it. We didn’t like the fact that we didn’t hear her choking and gagging like she normally does when this happens, but still it didn’t seem unusual.
At the pediatrician’s office, the nurse told us to lay her on the table and get her undressed so she could check her temp, measurements, etc. When we laid her on the table, she started to scream almost immediately and her arms and legs were straight up in the air stiff as a board. At the time, we thought she was afraid of falling off the table. We figured she didn’t feel very secure on the table since it is narrow and pretty high up. We told the doctor this and she seemed to think it sounded logical. When we held her, she would calm down, but every time we put her on the table, she would do the same thing – scream and go completely stiff with arms and legs in the air. She would turn bright red from head to toe too. The doctor ended up finishing her exam while Mike held Emily on his lap. The appointment was pretty easy otherwise – she didn’t get any shots or anything – just a basic exam and filling the pediatrician in on the last 6 months.
She was fine for the rest of the afternoon. We went to church at night and there were no issues. We came home and I laid her on her changing pad while I got her bath ready. She was perfectly fine in the bath until the end. As I was rinsing her off, she started to do it again – stiffening up, arms and legs in the air and screaming like she was being beaten mercilessly (while turning bright red from head to toe). Once again, I was thinking she didn’t feel very secure in her bath chair so I thought she would do better when I put her on the floor and wrapped her in her towel. That was not the case at all. She continued the pattern of screaming, throwing her arms and legs in the air, then calming for a bit and then screaming and throwing her arms and legs in the air. At this point, I ruled out the fear of falling since she was on the floor, but still wondered if she would feel more secure on her changing pad since it has raised sides. I think that was just wishful thinking on my part! The changing pad made no difference at all – she continued the same pattern. At this point, I was completely freaked out and didn’t really know what to do.
I held her on my lap for the longest time. This helped to calm her down, but I could still feel her body “jumping” every few seconds or so for a little while. It finally stopped and I was able to put her in her Tumble Forms chair for a bit before bed. She was pretty calm, but I was feeling panicked. Seizures completely freak me out! It makes me feel so helpless because there is nothing I can do to stop it. And we have never seen her have these kinds of seizures before, so that was freaking me out even more! We decided to call her neurologist in the morning. She slept through the night just fine with no more episodes.
In the morning, I called the neurologist’s office and was told that there would be no doctors or nurses in the office on Thursday or Friday. She said I could either call my pediatrician or go to the ER where the neuro docs are on call. Well, we were at the pediatrician when they first happened and clearly that was not going to help. The ER didn’t sound like a good option either. Why would I want to sit with a bunch of sick people for hours on end – just so I can expose her to the swine flu? Not a good plan. So we figured we would keep an eye on her and play it by ear. Well at her 10am feeding, she started to have another episode. Mike and I decided that we were going to the ER – no way around it!
Thankfully, it was pretty empty when we arrived. We waited in a little room that they set aside for well patients and didn’t have to wait long at all. When they took us back to our room we were told to get Emily undressed and put a gown on her. A nurse came in with the gown for us. As soon as we laid her down on the bed, she started to have a seizure right then. So I told the nurse “this is it – this is what she has been doing!”. Instantly there were about 6 people in the room with us. They told us that they were going to take us to a different room where they could monitor her better. When we arrived in the new room, we were surprised to see Kerrie and Aidan! Aidan’s trach had come out in the morning and they could not get it back in. He came to the ER in an ambulance. UGH! The poor little man really needs a break – he has been in the hospital enough to last a while (a long long while)!
I caught up with Kerrie while the doctors and nurses tried to start an IV for Emily. This is no easy task! I was trying not to watch what was happening. She was screaming and crying. They had undressed her, hooked her up to all kinds of leads and put an oxygen mask on her while they were holding her down and sticking her with needles. She was NOT happy! I finally went over there and tried to calm her (to no avail) while they put the IV in her hand, drew some blood and taped her arm to a board. They asked us a ton of questions, which were hard to hear over the screaming, but we gave them as much info as we could. They told us they would call the neurologist and test her blood for her seizure med levels and come back in a bit. After everyone left we finally calmed her down. While we were waiting, she was “chatting” away, smiling and just having a grand time.
Before we left home, we took some video of her seizures so we could show the doctors if we needed to. Well that was not necessary since she did a nice demonstration for them. So instead we took a picture of her in her cute little hospital gown while we were waiting (the green thing above her head is her Gloworm).
The doctor finally came back to say that she talked to the head neurologist at our group. He suggested that we add another seizure med to her list of meds. So now, she will take Depakote 3 times a day in addition to the Keppra she was already taking twice a day. They also gave us a prescription for a wafer that we can give her if she has a seizure. Emily will have to have blood work done in a week and then we will follow up with the neurologist’s office a week after that.
We still had to wait for at least another hour while they got the medicine from the pharmacy. We did bring Emily’s lunch, so we were able to feed her through her g-tube while we were waiting. When they brought the meds in, we gave them to her, signed our papers and were on our way home. We were there for about 3-3 ½ hours. She has been doing well today. No episodes and no weird reactions to the new meds. This morning I even heard her giggling in her sleep. I was glad that she was having funny dreams rather than nightmares about being stuck with needles!
I am still a little shaken up. I think I will be watching her like a hawk for any strange movements. I will be quite happy if I never see another seizure again! And Kerrie and I agreed that getting together for a playdate sounds much better than meeting up in the ER again!