It was said that we are lucky that we have good control of Finnian's seizures and that is why we are able to do all the fun things with him well I am sorry to tell you we don't have control of his seizures. During his awake cycle we have decent control but when he clusters or has a Tonic Clonic we have had to use his VNS and 2 rescue meds and still we were pushing to the last minute before we have to take him to the ER because he is in convulsive status seizures. His Doctor has changed his protocall and has added a 3rd rescue medication. I just hope I don't have to use all 3 as I know what 2 loads of benzodiazpines does to his breathing and his swallow control if I have to use all 3 he will end up in hospital.
We have no control over his seizures during his sleep cycle and on a good night he will have anything from 4-10 and hour every hour while he is asleep and on a bad night he has had as many as 28 an hour. He also has seizures when he naps.We have tired medications and increased his night time dose of Klonopin to try and calm them down but it doesn't work. We even tried adding a dose of valium along with his regular dose of Klonopin and his other seizure meds to see if it would make a difference on his seizures. It didn't but what it did was make him sleep more so he had more seizures. Because of his high rate of seizures during his sleep cycle he is at higher risk of SUDEP. He is on a pulse oximeter when he sleeps and on the not so good days and bad days he is always on the pulse ox to monitor his oxygen levels and his heart rate. We have seen his heart rate dip so low in to the 30's that we have to do chest compression's to bring his heart rate up. We have seen his heart rate hit a high of 256 and we prayed it would come down so he wouldn't have another stroke. We have seen his oxygen dip down to the high 40's and we have had to give him mouth to mouth and get him on oxygen and watch and pray that it will come back up to normal ranges. We have seen him seize and nearly drown on his own secretions nearly every time he has had a seizure like that he has ended up with aspiration pneumonia.
I never leave the house with out his rescue meds, oxygen, pulse oximeter and CPR mask even just to go around the corner. We never know when he will cluster or have a Grand Mal but we are prepared. We cannot and will not let his seizures control our lives. Yes sometimes its not easy to get out with him but we still do.So every chance we get we are out and about. He is very social friendly and has a smile for most people. I made a huge breakthrough with him about 3 years ago with signing yes and no but its in the last year he really uses it on a daily bases. He also has a few other signs he uses but he doesn't use them as good as yes and no.
Finnian might have Epilepsy/ Dystonia/CP and other issues but we try not to let them control our lives