It has not been an easy month here my blogger friends. On January 25th we were having a normal Friday afternoon. Nick came home from school as usual, and we all went to look at a house (because we are working on buying our own place!). Nick was just fine throughout this whole ordeal. About twenty or thirty minutes after we got home he simply crashed. He started having screaming, aggressive, and self injury fits. At first we think, Ok, we have been through this before, he just needs to calm down. He never calmed down. Three hours of screaming and hitting himself later we were taking him to the hospital.
Something must be wrong. But nothing was found.
We saw the psychologist there, and we thought this might be a reaction to his increase in risperdal a couple of weeks before. We thought it just might have taken that long to build up to an untolerable amount. Advice from the psych there was to decrease his amount slightly over the weekend, and talk with his regular psychiatrist on Monday. Ok. By this time, his melatonin had kicked in-as well as his evening dose of risperdal, and he was getting sleepy. Other possibilities were discussed, such as admitting him, but we are not 'going there' yet.
We were hopeful that this was just one of those One time events and that we would decrease his meds and everything would go back to normal. Well, here we are a full month later, and we are still not back to normal. That weekend he went through these episodes every 15-20 minutes. It got to the point where I was recording them on video because they seemed to develop a pattern. We got through the weekend (barely!) and first thing on Monday I was calling his specialists at school. By the end of the day, we had a prescription for Ativan. Nick was in no shape to go to school that day, so we took him out with us to pick up his new medicine, and eagerly gave him the first dose. While it did not stop these episodes, it did decrease their intensity to a more tolerable level. Lots of communication between all of his specialists in school and me went on during this week. I kept them in the loop of his episodes at home, and they did the same for me during school. Meetings were held to discuss his behaviors. Everyone noticed the drastic change in him. He went from having few aggressions and self injury through the day to having over 40 of them.
Just to get him ready for school takes two of us. He was no longer eating at the dining room table-but was being fed on the couch, we could not let our guard down. He started spiraling out of control. We were even to the point of having to take shifts since Nick would wake up in the middle of the night screaming as well.
His risperdal was once again increased to the normally maximum therapeutic dose of 3mg 10 days later, and we were still on the Ativan. We were told to try that for one week to see if it helps. We were also instructed to start sending some Ativan to school so he can have a dose at lunch time. This was due to the fact that once his morning dose wore off, he went out of control again. Emotionally, physically, and behaviorally he was a complete wreck. He has/had scratches up and down his legs from his toenails digging into them, bumps and bruises on his forehead from the head banging, and he was biting the inside of his mouth all up. He looked a hot mess.
But so did we.
This has taken a mental toll on us as well.
We don't sleep very well. We get short with one another. We are stressed beyond belief. Three weeks of a behavioral crisis have aged us about 5 years. I spent my birthday restraining my son from hurting himself as well as others. Not to mention all the other days since then we have had to restrain him. After not seeing any change in him with the risperdal increase, and honestly, I am not even sure the Ativan is doing much anymore, we were given a prescription of Depakote. He has been on that since Wednesday. Things have gotten slightly better. For instance, he is sleeping at night! (so far!) He is still having some episodes throughout the day, but not as many. But, this is only day 2. I am not getting my hopes up yet.
Right now his med sheet is:
1.5mg risperdal in the a.m. when he gets up
.25mg ativan at the same time.
.25mg ativan at noon.
1.5mg risperdal before dinner
250mg depakote before bed.
And we still do not know exactly what these episodes are. Last Saturday when his psychologist made a visit, he saw one from start to finish. It started with aggressions and screaming. Then, Nick was zoned out for about 20 minutes. No response from him at all. His eyes were glazed over, and he was just staring.During this time he had a lot of facial tics. Last night, he had one that started in the bath. Screaming and aggression. I restrained him on his bed. He was alternating from screaming bloody murder to complete calmness. Then, his whole body jerked. This happened a couple of times and always in this pattern. He has had three EEG's that have shown nothing, but we are still dealing with these things.
But, that is where we are now. I can only hope that things start improving. We shall see.