Well, Neurology came to see me today. The EEG showed minor improvement from the last one. The prednisolone is only a short term treatment. We were told that we could either bump up the dose slightly for another week and then start weaning her off, or start weaning her off now. The first thing they suggested as the next line of treatment was the Ketogenic Diet. Ugh. Most of what I know about it is that it's an enormous amount of work with calculating, measuring, weighing and preparing the meals. It's a mathematically calculated, doctor supervised diet high in fat and low in carbohydrates and proteins, and strictly limits both calories and liquid intake. It helps to control seizures and allows many children to become both seizure-free and drug-free. We know a family whose daughter is on the Ketogenic Diet and it has reduced her seizures by 90% and she is in the process of weaning off several medications.
Apart from that suggestion, they said there are a couple of other drug options to consider as well. They wanted me to talk to Francis about it and they'd be back first thing in the morning to see what direction we are wanting to take. I feel like they left this massive load on my shoulders. I'm not a doctor, how am I supposed to know what's the best route to take, I don't know how that is my decision to make based on a 5 minute conversation with a neurologist that I've never even met before. I hunted her down a little while later and said that I'm uncomfortable making a decision like this so quickly and she said that's okay, it's not that time sensitive.
This is so overwhelming. I don't know what to do. We kind of thought that at some point the Ketogenic Diet would come into play, but we certainly weren't expecting it yet. So much to think about.
On a lighter note, the Olympic Torch came to Children's this morning! I got the okay to wheel Taylor down with her IV pole to see the torch. It's Day 82 of the Vancouver 2010 Olympic Torch Relay. We got escorted to a special patient section and had front row seating, we were literally right infront of the action, how cool is that?!!! I watched the news tonight and we almost made it...I could see Taylor's IV pole, and the top half of her stroller. If the camera had come down one more foot Taylor would have made the news :-)
Apart from that suggestion, they said there are a couple of other drug options to consider as well. They wanted me to talk to Francis about it and they'd be back first thing in the morning to see what direction we are wanting to take. I feel like they left this massive load on my shoulders. I'm not a doctor, how am I supposed to know what's the best route to take, I don't know how that is my decision to make based on a 5 minute conversation with a neurologist that I've never even met before. I hunted her down a little while later and said that I'm uncomfortable making a decision like this so quickly and she said that's okay, it's not that time sensitive.
This is so overwhelming. I don't know what to do. We kind of thought that at some point the Ketogenic Diet would come into play, but we certainly weren't expecting it yet. So much to think about.
On a lighter note, the Olympic Torch came to Children's this morning! I got the okay to wheel Taylor down with her IV pole to see the torch. It's Day 82 of the Vancouver 2010 Olympic Torch Relay. We got escorted to a special patient section and had front row seating, we were literally right infront of the action, how cool is that?!!! I watched the news tonight and we almost made it...I could see Taylor's IV pole, and the top half of her stroller. If the camera had come down one more foot Taylor would have made the news :-)
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