More Medicines

In the last couple of days we've added 3 new drugs to Jordan's regiment. Fun fun. Just more things to schedule and remember each day.

The first, amoxicilin (2x/day), is only temporary, to help with the pneumonia, ear infection, and upper respiratory infection. We'll be done with that in about 6 more days. She seems to be feeling much better in general, but still has some major coughing fits a few times per day (and night).

The second is Prevacid (1x/day), to stop acid from being generated in her gut, and hopefully stop her acid reflux. I guess I should call the pediatrician to find out if she thinks we should stop the Zantac (3x/day), or keep it, since they compliment each other. I'm just worried it might be overkill.

The third, Keppra (2x/day), is a bit of an experiment (as all seizure medications are). We had a long meeting today with her pediatric neurologist, who we really like and admire as a doctor. He said that he was not worried about the fact that her EEG was done during her RSV stay in the hospital, and that he was able to glean the information he needed from it. Amazingly, before he came in the room, Devon and I saw some examples of different EEG patterns on a poster on the wall, and both immediately recognized Jordan's EEG pattern to look most similar to the Lennox-Gastaut Syndrome* EEG pattern. She is not having severe seizures at this time, in fact, she is possibly only having some minor seizures. So, it really is not an easy decision about whether to medicate her or not.

In the case of an otherwise developing child (not necessarily "normal," but developing at some rate), seizure control would be expected to improve physical & cognitive development, and seizure control is considered vital. However, based on what we know of Jordan thus far, it is doubtful that these very minor seizures are impeding her development. So, we have a choice, to let them go and keep her off medication, or try to gain seizure control, and possibly even "clear up" her EEG (although no one believes it will ever be 'normal'). I made it clear to the doctor that we would medicate her if he believed that her seizures were painful or if they were causing damage to her brain. He didn't believe they were, but based on what we know about her brain at this point, her seizures could easily become stronger and more life threatening, so we decided to give the Keppra a try (and maybe prevent other seizures from developing).

As far as the medication goes, it's the most benign of the medicines used for LGS, and we're starting with a very low dose. We'll increase it a little bit every two weeks until we get to the maximum dose, and then we will have to decide if it is helping. The major side effect of this drug is irritability & crankiness, so we'll see in a couple months if we think it's worth it. There are a couple of other drugs that we can try as well, but those have more dangerous side effects that need to be considered (liver failure, for one).

I was relieved to hear that this doctor does not support the idea of using more than one or two medications at a time. In many cases, doctors will prescribe 6, or 7, or 8 medications at a time to try to stop seizures. Since each person reacts & responds differently to each medication, it really is a guessing game to know what will work in the end (if anything), and how long to give each medicine before moving on or adding the next. In some cases people respond on the first dose, others take weeks or months to respond, and others have a slow transition, gradually becoming seizure free. So, it's hard to say if 2 months will be long enough to know if the Keppra is working for her, or if it never will, or if we should try it for 6 months instead, or perhaps at a higher dose, or even a lower dose. If you ever thought medicine was a "science" -- think again. Yes, there are laws of nature that are followed in general, but a human life is too "random" to be able to control all the variables.

So, now we're into an experimental stage, and with Jordan it's hard to know exactly what we are looking for. But at least we feel comfortable that we can work with this doctor to figure out the best course of action for Jordan and her LGS.

*Lennox-Gastaut syndrome is a severe form of epilepsy. Seizures usually begin before 4 years of age. Seizure types, which vary among patients, include tonic (stiffening of the body, upward deviation of the eyes, dilation of the pupils, and altered respiratory patterns), atonic (brief loss of muscle tone and consciousness, causing abrupt falls), atypical absence (staring spells), and myoclonic (sudden muscle jerks). There may be periods of frequent seizures mixed with brief, relatively seizure-free periods. Most children with Lennox-Gastaut syndrome experience some degree of impaired intellectual functioning or information processing, along with developmental delays, and behavioral disturbances. Lennox-Gastaut syndrome can be caused by brain malformations, perinatal asphyxia, severe head injury, central nervous system infection and inherited degenerative or metabolic conditions. In 30-35 percent of cases, no cause can be found.