Ashley had an appointment with her neurologist yesterday. And unlike many of our specialist appointments, we didn’t have to wait long. In fact, we were the only people in the waiting room. Once in the exam room, Ashley was happy and quite thrilled that I kept giving her sparkly hand lotion. The doctor and I were able to talk, and plan for Ashley’s next six months. All in all, a good time was had by all – except for the fact that Ashley’s seizures are less controlled now than ever.
Early in life, Ashley had what were then termed grand mal seizures. Very, very scary, yet almost completely controlled by one medication. Then puberty approached and the world shifted in many ways, including many more seizures.
The new seizures were different – not grand mal but still just as scary. At the worst, she would have 10-12 a day, and often they would cause her to vomit or cry uncontrollably. But the neurologist rode in to the rescue, and several new meds later, Ash is down to 3-5 less severe seizures each day.
Then about a month ago, a new type of seizure emerged. The previous ones were still there, but now right after waking and just before bed, Ashley will have clusters of myoclonic seizures – a series of brief, jerky movements.
According to epilepsy.com, myoclonic seizures occur in a variety of epilepsy conditions, including:
• Juvenile myoclonic epilepsy: The seizures usually involve the neck, shoulders, and upper arms. In many patients the seizures most often occur soon after waking up. They usually begin around puberty or sometimes in early adulthood in people with a normal range of intelligence. In most cases, these seizures can be well controlled with medication but it must be continued throughout life.
• Lennox-Gastaut syndrome: This is an uncommon syndrome that usually includes other types of seizures as well. It begins in early childhood. The myoclonic seizures usually involve the neck, shoulders, upper arms, and often the face. They may be quite strong and are difficult to control.
• Progressive myoclonic epilepsy: The rare syndromes in this category feature a combination of myoclonic seizures and tonic-clonic seizures. Treatment is usually not successful for very long, as the patient deteriorates over time.
Ashley’s neurologist believes hers are the juvenile myoclonic epilepsy type. What that translates to practically is that we must increase some of her seizure meds.
I had wanted to work on decreasing meds – perhaps even eliminating some. She is currently take 4 medications at a pretty high dose, and now we are going to increase one of those.
The good news is that the new seizures don’t seem to bother Ashley, and they don’t last long when they are happening. She is still my wild and crazy and very loving teenager, and when she smiles at me, seizures and medicine are the last thing on my mind!
Today I am thankful that my state government has provided counselors throughout the day for anyone who knew Lou or who witnessed her accident or who just wants to talk. They didn’t have to do it, but doing so is a wonderful gesture, and I applaud them.
