As most of you know, Mr. Boo checked into Gillette Children’s Hospital on Thursday for a 24-hour VEEG. He did not particularly like being hooked up to all those electrodes, but he handled it with grace. Thank heavens for Sam, he told the tech he wanted to leave, and the iPad , for distracting him. He was not really interested in television, and a bed is not exactly a high action place to hang out. He was tethered on a 30-foot cord, so the farthest he could really go was to the bathroom and back. He was very happy when Daddy and Alissa came to visit him and brought Taco Bell. All things considered, the hospital food was not bad, but nothing beats a Freezie from Taco Bell. His visitors left around 9:30 pm and we got Boo ready for bed. He settled down relatively quickly and went to sleep. This lasted until 3:45 am when he was suddenly awake and very lively. He hooted and stimmed, hummed and banged. His bed had padded rails around it, in case of a seizure, so he happily bounced off those for a few hours. Eventually, breakfast came, and he happily devoured bacon and French toast.
After breakfast, the tech came to relieve him of his electrodes. As they had not used actual glue, it was pretty easy to get them out of his hair. I think he rather liked the experience, and then let me attack the chunks of matter in his hair with a comb and some detangler. Shortly after, the nurse practitioner stopped by. She had read the results of his VEEG. She said they showed no actual seizure activity, but some unusual brain waves. Instead of just smooth flowing waves, Boo had some waves that appeared spiky. She said these waves were little pops of electricity. Enough of these “pops” would lead to a seizure. This told the team that Boo needs to stay on anti-epileptic medication. No real surprise there. I had never anticipated that he would go off medication. I have seen what happens when Boo is off meds, and it is not pretty.
A light rain was falling as we dropped him off at Focus Beyond. He was ecstatic to be at school and teacher Rosalind was happy to see him. He bounced down the hall with her and I went home and took a long nap. When Boo got home, he was happy and hungry. He had a snack and watched some videos. I was playing with the hedgehogs and asked Robert to take him to the bathroom. Thirty seconds later I heard a heart stopping groan from Boo as he pitched headfirst off the toilet and had a tonic clonic seizure on the bathroom floor. Bathrooms are the worst places to have seizures, as our bathroom is tiny. I could barely get in the door around his thrashing body. All Robert and I could do was put towels under his head and try to protect him from hurting himself. The seizure lasted at least two minutes, and then looked as if it were about to start up again. We gave rescue meds nasally and waited. Eventually, the two of us were able to lift him off the floor and put him on his bed. I called the triage nurse at Gillette who called the doctor on call. Boo kept shifting around, his breathing labored and not able to get comfortable. The nurse called back. I described his symptoms and coloring. I was surprised that she did not tell us to bring him in to the ER. Perhaps, I do not come across as a hysterical mother. I go stone cold calm in the face of an emergency. I don’t fall apart until much later. Maybe some hysteria was needed. At any event, she told us to call back if he got worse. He eventually fell into a deep sleep. Robert and I brought our devices into his room and hung out while he slept. It was another wild Friday night chez Herndon. At some point we got him into pajamas and gave him his meds. He slept through the entire thing. I went to bed with his door open, my door open, and the monitor turned up loud. He did not make a sound the entire night, and when I got up at 4:45 am, he was still deeply asleep.
My thoughts on this matter. There are three stages to a seizure, prodromal, icthal, and post ictal. The prodromal stage is the precursor to a seizure. When Boo was exhibiting the unusual brain waves on the EEG, I wonder if this was his prodromal stage. The ictal stage occurred when he was in the bathroom. This is a full-blown seizure. It can last seconds or minutes. In anything over 5 minutes, and with rescue meds on board, one needs to call 911. The postdromal stage is the stage he is in now. This is the recovery stage. The person usually falls into a deep sleep. In the case of Boo, he may need anywhere from 8 to 12 hours of sleep just to reset his brain. I usually give him an anti-inflammatory at this stage, as people with epilepsy tell me that their muscles really hurt after a tonic clonic seizure. It is the muscular equivalent of running several marathons back-to-back. As a distance runner I have done this. Let me tell you, it hurts! As a runner, I am used to pain and discomfort, there is a reason for it. My body is sending me messages. Boo does not have this, all he knows is that he is confused and in pain.
I am not certain how to navigate the coming days or weeks. I know neurology will give me a call on Monday to discuss meds. I don’t want him to go back on the Topomax, as he seems so much more alert off it, and is finally gaining some much-needed weight. I don’t know if Fycompa is the right drug for him, if we just need to raise the dose again, or to try something else entirely. Today is bowling day with Special Olympics. Boo loves bowling. I will see how he is doing when he wakes up and then make the decision of whether to attend or to stay home. Starting this Tuesday, his class has the chance to go swimming every week at the JCC. Boo loves to swim, but with his seizures being so unpredictable, I don’t think this is safe. Perhaps, it would be better to have him play in the gym with his friends until we get things under control. I am terrified of the idea of him having a seizure while in the water.
I want to say thank you, thank you, thank you to all of you for your messages and good wishes while Boo was in the hospital and then last night. I know that Boo has a small army of people praying for him, sending him white light and good vives. It really helps to know that we are not alone in the world. I will keep you posted, and we will chat soon. Peace out and be good humans.