Our day started off ok. Lucy woke up at around 8 am, played with some toys, chatted to people she felt like chatting with, ignored those she felt like ignoring, watched Tinkerbelle for the billionth time, and then started seizing again. The team was rounding when she started seizing so they were able to witness first hand the type and intensity of Lucy’s seizures. In a way I was relieved that they saw them, I no longer have to describe to them what they are like. She seized for almost five minutes when they ordered a loading dose, the maximum amount, of phenobarbital for Lucy’s weight to stop the seizures. Since then she has been sleeping, pretty soundly.
Why is this happening, it’s anyone’s guess. In theory Lucy did not have enough methadone for it to really have this much of an effect on her, but we all know how much Lucy likes to follow theory. It’s possible that this has something to do with starting her on methadone, but not very probable. None the less we have discontinued methadone for the time being. Could it be a paradoxical reaction to the phenobarbital? It’s very unlikely, phenobarbital is a tried and tested medication, this is one of the reasons we agreed to trialing it with Lucy. The words disease progression were uttered too many times today for me to count. I don’t doubt that that could be a likely contributor, but there are also a lot of other things going on that we need to investigate.
Neurology was consulted today and discussed with me the need to put Lucy on another anti-seizure medication. Phenobarbital is a sedative. Lucy is experiencing seizures despite being on phenobarbital. Increasing her phenobarb dosing to control her seizures long term is not the best plan for seizure control, that is if we ever want to see Lucy awake. We are going to continue to use phenobarbital at night, but add in keppra for more seizure control. Keppra is another tried and tested anti-seizure medication that is not as sedating, is used to treat varying types of seizures, and it comes in IV form. For these reasons we are going to be adding this med to Lucy’s already long list of medications tonight.
I was and still am hesitant to start her on anything new tonight as she has so much going on. Dr. C who is covering for our beloved Dr. R came in this evening to discuss with me our options, she really helped me to make this decision for our girl. She believes that the combination of the two anti-seizure medications are what Lucy needs. We are going to be starting Lucy on a loading dose of keppra tonight, and throughout the weekend we are going to be monitoring her to ensure that the combination of these two drugs is working. Yes, you read correctly, we are here for the weekend.
Drew and the kids came over for dinner tonight, unfortunately Lucy was not awake. This made the kids sad, and Lucy even sadder when she finally did wake up at 9:3o pm tonight asking, “when the kids coming?”. Lucy and I called the kids and they said good night and I love you over the phone, be still my mama heart. We are looking forward to seeing everyone tomorrow night.