This has been a difficult week for us. We decided to place Brady on seizure medications as his seizures continued to increase in frequency and duration. We had discussed our options with a couple of different neurologists over the past six months and finally decided that it was time. We weighed our options with a couple of different medications (all carried side effects that can be frightening) and finally decided on Trileptal. Anyone who has gone through the process of diagnosing seizures will vouch that the process is both difficult and scary. First of all there are many types of seizures and it is not easy to identify the specific type. Brady has been through three different EEG procedures in the past year (of course he didn't have any seizures while hooked up to the machine). One of the EEG's was actually a 3 day study in the hospital (which tested all of our patience levels) that revealed no seizure activity. The picture on the "RSV SUX" post was actually taken in the Epilepsy Monitoring Unit at the hospital where we did the 3 day study. The bandage on his head was to keep Brady from pulling the wires off his head. We have tried to catch a couple of seizures on our own with the video camera but have been unsuccessful because it is too frightening to leave his side as the seizure is happening to get the camera and you don't think to grab it as you are racing in. We finally had to make an educated guess that Brady was suffering from Complex Partial Seizures which means that the seizure originates in either the right or left hemisphere of the brain causing the opposite side of the body to shake. Our best guess is that Brady's seizures are beginning on the left side of his brain (which is actually where he has an arachnoid cyst) because his eyes are usually shaking back and forth while looking up and to the left with the right side of his body doing most of the movements (usually a rythmic pumping motion). He will ocassionally bring his fist to his mouth while he is having the seizure and there is no shortage of slobber. His mouth and tongue make a smacking or clicking sound (almost as if he is tasting something) and usually end up blue in color as he struggles to breathe regularly through it all (this is the scariest part). His seizures usually last anywhere between 1-4 minutes (they seem much longer). He usually sleeps for a while immediately following the seizure...unless we call the EMT and they wake him to take his vitals and in this case he becomes EXTREMELY irritated (needless to say, we don't call very often anymore!)...
So far so good with the medicine and he is very good to take his "Medicine Candy". As Kajsa noted in an earlier post, some of our posts may seem like a little too much info but we are hoping that someone will be helped in some way shape or form by stumbling into our blog. We have learned so much from others and hope we can do the same for someone else.
The one thing we truly regret through this whole process is not buying security cameras for the house earlier in the process as we witnessed Brady having a seizure in his sleep the first day we had the camera monitors set up (if only we would have had a recorder set up at the time). All but one of Brady's seizures have been during either a nap or while sleeping at night. We realized that we don't know how many seizures he has had in his bed by himself without our knowing. This left a sick feeling in our stomachs knowing that Brady has been alone at times having seizures. Second guessing yourself is not a fun activity and we are getting way too good at it. You will find much better descriptions of seizures and medications than I gave at http://www.epilepsy.com/
(This picture was actually taken in Utah last spring...thought it may bring hope to everyone that the snow really does eventually stop!!)