Friday, March 29, 2013

Long Overdue Update....

It has been a long time since my last update and I apologize! The kids are on spring break right now and the first few days really threw Nick for a loop. The past two days have been rather good, so I am taking the chance to update.

Two weeks after Nick started with the depakote he came down with a horrendous stomach bug. He could not keep anything down, and was having constant diarrhea. I at first thought his blood levels on the depakote might be high-since those symptoms are the same as flu type about confusing. Anyway, I called the nurse hotline and they said to take him in. I was really not keen on spending my weekend at the hospital, but if that is what we had to do, then fine. They took his blood and his levels were a little high, but only because he was so dehydrated. We were told to stop the depakote for a couple of days, and they gave him medicine to stop his constant vomiting. We ended up back in the hospital about 24 hours later because he had constant diarrhea. He was one very sick boy.

Being off the depakote allowed us to see if it was working or not. And boy, did we. 24 hours off it and his tics were coming back with full force. Poor kiddo was too sick to really do anything else, so that was all we had to go by.

Now, he has been doing better and getting better reports from school. His self injury behaviors have drastically decreased, as well as his aggression! Which has been wonderful! However, he is still having these jerky movements. And now they are starting to involve his whole body. There is a pattern to them. He gets Aggressive and has to be restrained (not hard-he can still move, we are just laying on the couch with me holding his hands). He screams bloody murder, stops suddenly, then jerks. Not just once, but multiple times. Afterwards, he is usually subdued and will remain on the couch for a while. I sent in some video to a couple of doctors who say they don't look like seizures, but they cannot say what they are. They know it is not normal, but can't say any more than that. So, at the recommendation of his school psychiatrist, we are seeing a neurologist from the children's hospital on May 2nd. This will be our fourth time going for an EEG and I am going to push for a longer EEG if it is not offered. I am tired of not knowing. I am tired of everyone seeing these and saying "You are right, something IS going on, we see it too" only to have nothing show up.

But, he is having a good day today. Lots of words and happiness. I am enjoying every second of it. I hope everyone has a wonderful holiday this weekend!!