Epilepsy diagnosis

Well, the past week has been a dip in our rollar coaster of an experience. We had our neurology appointment on Thursday and did not receive good news about Taylor's seizure. Dr. Vlucek gave a very long-winded description of what they were looking for on her EEG test, combined with her brain malformation and initial seizure, ultimately led to a recommendation to put Taylor on anti-seizure medication. She was officially diagnosed with epilepsy - which we learned simply means that she "has the tendency for recurring seizures". We've now become acquainted with another condition we'd rather know nothing about.

To his credit, Dr. Vlucek spent nearly 90 minutes with us, educating us and walking us through his thought process. While her initial seizure was very quick, he said they are not progressive and just because the first one was minor, doesn't mean that future seizures will also be minor, or progress over time. Her EEG test indicated that she is highly susceptible to seizures in both hemispheres of her brain. They term this "multiple onset of partial seizures". He compared the spikes of her brain activity on the EEG to dominoes - they might stand up perfectly, but if the right combination falls, it can be very dangerous for her.

He said one to several seizures are typically OK, but recommended medication for Taylor to prevent future seizures. The goal of the medication is no seizures and no side effects. We've learned this can be a tricky balance and it may take awhile to get the perfect medicine cocktail for her. He said they can perfect it in about 75% of patients. Others either have ongoing seizures or side effects. The side effects aren't life-threatening, but can impact quality of life - namely excessive grogginess and irritability. We'd heard horror stories about how challenging the medication can be, but it sounds like the drug companies have made great progress and once you find the right medication, it often works really well. This was a relief - we were really hoping to avoid medication for Taylor. You just don't want to mess with her precious personality and tenacious work ethic, but we were convinced this is the right move. We will seek a second opinion, but it will probably take us months to get in the door of another neurologist and we'll start the medicine in the meantime.

Similar to the allergies, this is another potentially life-threatening condition, that -should- be managable with precaution and medication. Apparently "seizures can beget seizures", so the goal is to stop them quickly before the brain becomes conditioned to become seizure-prone. A short seizure is not terrible, but a long seizure can cause brain dysfunction, or if severe, death. We were told to call 911 if a seizure lasts 5 minutes (we'll probably jump the gun much earlier) - apparently it doesn't get dangerous until the 15 minute mark and few go that long (and paramedics can stop them). Typically a seizure needs to last 60 minutes to cause death. We had questions about flying or other remote possibilities where you might not be able to receive medical care that quickly and there is an option - dyestat- that is a rectal emergency medication that you can take with you if you're flying over the ocean for example. He said the plane was more likely to crash than to have a life-threatening seizure on the plane, but it does happen so you can be prepared.

Taylor had a tonic seizure, which means she stiffened versus a convulsive seizure. He told us to look for similar stiffening, eye rolling or odd eye movement, a vacant stare, or a weird cry that lasts a few minutes before falling asleep. If she has a seizure, we're supposed to lay her on her side and not put anything in her mouth. She will take a drug called Kepra, which has been FDA approved and over 500,000 kids have used. He said 2-3% of kids have grogginess with it and 5% have irritability/sleeping issues. If this is the case, we'll adjust her dose or try a different medication. They are slowly upping her dose over the course of three weeks to help her ease into it. She had her first dose today because we couldn't find a pharmacy that carried it and it took a few days to get her dosage. It didn't seem to affect her and we are really praying that she continues to adjust.

He said she might outgrow the seizures, although with her brain condition it wasn't highly likely since she's shown a disposition for seizures. If she doesn't have one for 1-2 years, they'll do another EEG and see if there is improvement.

The past few days have been hard - we just really didn't want her to have anything else to deal with, but thankfully this should be controllable. After the first tough day, we're rolling with it and hoping for the best - it falls in the "what choice do we have" category and we have to trust that it will be fine and pray for the best-case scenario - no seizures and no side effects. The next few weeks will be anxious as we increase her dosage (twice a day), so send her a few extra prayers.

Meanwhile, we had a nice week-end with the kids and saw several friends. Life, as usual, marches on and we strive to keep things normal for all of us. The past two weeks have been absolutely nutty with all of the doctor appointments and end-of-school year business. We're really craving a "normal" busy week. Thankfully, the sun has shone and Taylor continues to smile and make improvement with her therapy. We're hoping this latest bump doesn't slow us down again - we just got her ears working!