For those of you who have been following my son, Brandon's, progress, here is an update on him.
First, a quick summary on where we were. Brandon started (officially diagnosed) having Partial Complex Seizures in September of 2010. He was having up to seven seizures daily. Now, looking back, he may have had seizure activity, especially while at school, 2 years prior to his diagnosis. He started taking his prescription for seizures in January and immediately stopped having seizures. This lasted 2 months. He began having infrequent seizures again, and to this day, we have been unable to control them.
He now goes a couple days, up to 2 weeks without any seizure activity, but then may have up to 15-20 seizures in a day. With these seizures, his heart rate dramatically increases in it's rate and you can feel how hard it is pounding in his chest. His seizures completely wipe him out afterward.
But despite all of this, Brandon does very well in school and is a great big help to me at home. He is now 13. But because we haven't been able to eliminate his seizure activity after such a long period of time, his neurologist sent him down to Seattle for a 48 hour video EEG, an MRI, a CAT scan, and blood work.
The opinion at this time is that we will continue to increase Brandon's medicine until he is at his maximum dosage, but it will most likely not help. We would then try a second prescription but were told that if the first one doesn't work, the second one will most likely not work either.
There is a small chance that if we leave this untreated, he could outgrow this condition. More likely, though, his seizures could become worse until they reach Grande Mal state, and would disrupt any kind of normal life for him. So the only option we are faced with to eliminate his seizures is brain seizures. I want his seizures to be gone, but the idea of brain surgery scares me to death.
We try to put on a brave face in front of our boys, but I am so emotionally drained at this point. I am so heartbroken. I have always believed there is a light at the end of the tunnel, but the end of the tunnel where the light is just never seems to get any closer. I just remember trying to have the healthiest pregnancy...I nursed my boys for 4 years to create a healthy immune system...and still feel like I must have done something wrong. I know it may have been inevitable, but I have such a hard time thinking that I must have done something wrong and this is my fault.
I know lots of crap exists in the world, and children are faced with much more serious conditions than what Brandon has. And I feel so much for those families. But my boys have always been my life, and life just feels so fragile at times. I would literally die if something happened to either one of them.
Please just keep Brandon in your thoughts. I just want him to be healthy again.
