Last week we met with the neurologist and she increased the Vigabatrin which seems to be working except for a few little twitches. However since she increased the medication he has been seizure free. We will have to wait another two weeks and if he continues to be seizure free, she will have him go back into the hospital to undergo another 24hr video EEG to confirm that he is in fact seizure free. We are also in the process of tapering him off of the Phenobarbital and the Predisone. I am not sure how much longer he will be on the Phenobarbital but he has four weeks left on the steroid. We also had our weekly appointment with the Pediatrician to have his blood pressure checked and it was normal. Thank goodness, so hopefully now that we are almost done with the steroids, he will continue to have normal blood pressure checks.
Can I just tell you how much happier he has been since he has been seizure free and since we started cutting him back from the steroids. He actually now enjoys his therapies and is self-soothing. He also started going to bed on his own and no longer needs to be nursed at night in order for him to go to sleep. He is actually starting to wean himself. I am so proud of him. He is my little trooper. He is becoming much more active even though the new medication seems to make him sleepy at times.
I wil post some pictures of him soon.
Glad to read that everything is going well for him. This is a subject near and dear to my heart since I grew up with my mom having a seizure disorder as well. I hope everything continues to go well.
ReplyDeleteMonique, thanks for these little updates. I am so glad to hear about your little trooper and his improvements! One step at a time and he will get there and before you know it this will be a distant memory! Continued prayers and sweet thoughts to you and your family as you work through this together!
ReplyDeleteXoxxoo ~ Theresa