I’ve Got Spots!

At the suggestion of the Neurologist, we immediately started Nate on anti-seizure meds immediately following our appointment on May 30th. She recommended we start with Oxcarbazepine (Trileptal) which was the most common medicine prescribed for kids with temporal lobe epilepsy. In addition to Oxcarbazepine, Nate was prescribed Nyzilam, a rescue nasal spray for seizures that lasted longer than 5 minutes. Admittedly, while I trust the all of doctors with my kid’s care and generally support their recommendations, I’m always anxious when starting the kids on new meds. This time was no exception…especially since I hadn’t really seen Nate have seizures aside from the Easter incident. But I also knew that I understood virtually nothing about seizures, and if Nate’s weird feelings were, in fact, seizures, I certainly thought we should do whatever we could to help stop them so that he didn’t have any further damage to his brain. We picked up the prescription that evening and started Nate on the lowest dose of the meds on Wednesday morning. I was truly amazed at the change I saw immediately in Nate’s sleep patterns. Nate has always been a good sleeper, but he often wakes up during the night. He not only seemed to be sleeping more soundly but also more peacefully. I was encouraged that this medicine was the right step to take as it definitely seemed to be helpful. A week later, I wasn’t just encouraged, I was convinced.

Declan and Nate had off school the following Friday, June 9th, as the school year was wrapping up. It was perfect timing for a day off, as we had family in from California and the boys were eager to spend some time with their cousin. We all decided to meet at a great coffee house and bakery in Downingtown, The Farmhouse, to have coffee and breakfast, before running some errands to prepare the boys for summer camp. We had a great time at breakfast and then headed out to get some new summer clothes and water bottles for camp, and as we were driving from The Farmhouse to Lowes (for me to pick up a few items for the house), Nate asked me to look at the spots he had on his legs. I was taken aback, both of his legs were covered in red spots that looked like pimples. He had been playing in the woods behind our home the evening before, so I wondered if he perhaps had poison ivy or some sort of contact dermatitis from something he touched in the woods. We parked at Lowes and I asked him to take off the sweatshirt he was wearing so I could see if he had any spots anywhere else and was horrified to see that he was COVERED in red spots, from his neck all the way to his ankles. Immediately I thought this was a reaction to the meds. I knew from reading up on the meds that reactions usually occurred in the second to the third week of taking the meds, so I immediately called CHOP Neurology to ask them if we should discontinue the use of these meds. They were incredibly responsive, asking if we could get Nate to his pediatrician to check the rash. The pediatrician said to come out at 4pm (it was around noon at this point), so instead of going out shopping, we went home and I had Nate take an oatmeal bath. By the time we left for the pediatrician, the rash looked much calmer.

The pediatrician took a look at the rash, but it did appear to be disappearing and by his estimation, said it didn’t look to be a drug rash. He said to keep an eye on it and call him back in the morning since they have Saturday hours so if needed he could always check it again. He did think it could be a dermatitis though, maybe that occurred from something Nate touched in the woods. So we called the Neurologist back and she recommended that we continue the medicine as prescribed and if anything changed to call the emergency line. So that night, we gave Nate his night-time dose a few hours before bed. I was anxious, the rash had almost completely disappeared by the time he went to bed. Doug was away for the weekend doing service work at one of the Boy Scout camp, so I called him to let him know to keep his phone turned on in case anything alarming happened overnight so I could get a hold of him.

When I woke up the next morning, Nate’s rash hadn’t reappeared, so I thought we were in the clear. Nate took his next dose of meds and I grabbed coffee and went out to have a cup of coffee on our deck while I waited for the other boys to wake up so I could make them breakfast. About a half hour later, all the boys were awake and playing when Nate came out on the deck. The rash had come back with a vengeance all over his body again. I immediately called the pediatrician and he had us come out right away. When we got there, it took less than a minute for him to confirm that the rash was indeed a drug reaction. He explained that the way you can tell a rash that comes from a drug reaction is by looking at it from an angle and if you can see a white border around the outside of the spot, that’s a tell. Nate’s rash had that reverse bull’s eye appearance. He said that anaphylaxis was unlikely, as that typically occurs quickly, but if Nate had any trouble breathing, to head to the emergency room. Otherwise, he instructed us to do another oatmeal bath and Benadryl and to discontinue the meds immediately. We also called the on-call Neurologist, who agreed we should completely stop meds, and let the rash clear up over the weekend, and she would have our Neurologist call on Monday so we could discuss new meds.

The rash cleared up very quickly again…by that evening it was almost completely gone and Nate had no other adverse reactions along with it, thankfully. On Monday morning, the Neurologist called and we discussed the next best medicine for temporal lobe seizures for kids who couldn’t tolerate Oxcarbazepine medications. She called in the prescription for levETIRAcetam (Keppra) for us to start. She did warn us that this medication could cause some behavioral issues, however, that was only in about 10% of patients and was usually easily regulated by including a B6 vitamin as part of the daily routine. We picked up the prescription that day and Nate thankfully tolerated it well. He did end up getting the B6 after a few weeks because we noticed a marked increase in his reactions. Normally a very well-adjusted and happy-go-lucky kid, he had begun becoming very frustrated and cried quite a bit more than normal about pretty insignificant things. The B6 helped almost immediately. He still is a bit pre-teen in his reactions, but he’s largely back to his normal self, thankfully!