8iRWeiXjcKj9kUz5Tebo4_k_FtY Life with Two Special Needs Children: Caleb Video EEG results & Med Change

Wednesday, July 22, 2009

Caleb Video EEG results & Med Change

Well, once again, it's been over a month since I've had time to sit down and write anything on this blog. Things have been very busy. The last time I had time to just sit and think and write was when Caleb was in the hospital having his Video EEG performed. Then I was so tired because there was no time for naps (they didn't want him to take naps and wanted him to stay up late so that he was good and tired most of the time so we could get accurate results.) When he got out of the hospital, it has been non-stop until now, July 22nd. (I had actually typed this up on July 4th while we were driving to Branson on vacation. But, as always, something comes up and delays me!)

When we arrived at the hospital for Caleb's Video EEG we were supposed to go straight to PICU to have Caleb sedated. We ended up not sedating him for a couple of reasons. The doctor that was going to do it really didn't want to do it, which was evident during our first initial meeting. While I was glad that she was being thorough, the way that she was going about it was very irritating. I had to explain Caleb's medical history to her over and over again. I had given the sedation nurse the information about Caleb's medical history when they had called a few days prior to admission, including all the information regarding the concerns the cardiologist had about the size of his heart and that he was cleared last year with no restrictions and only to return if he started having problems. Well, she needed the reports. I also told her that we had talked about putting him on Clonidine at one point and the cardiologist told us not to because of it being a cardiac medication. Evidently, the medication that she uses for sedation is not good if there is a cardiac problem. It took a while to get the results since the tests were not done at the hospital, but at the medical clinic that we go to.

By the time 11:00 rolled around they still hadn't done Caleb's I.V. and blood work that was needed to be done prior to the sedation. Finally, they came into do that and the EEG techs came in and explained how they would put the leads on Caleb's head. They related very well with Caleb and we all decided that we would let them try to get the leads on without sedation. I was so proud of Caleb. He listened to them and was easily distracted when they would use the air gun to dry the glue they put on the lead to his head. It took a little over an hour, but they got it done WITHOUT sedation!

Here is a picture of Caleb wearing his special hat!

By the time that they moved Caleb up to the Video EEG unit, I was tired and hungry. They brought Caleb some chicken fingers and I ran downstairs got some lunch. We then hunkered down for four days of constant monitoring. That first evening Caleb's neurologist came in and reviewed what was going on with his brain and also the lab work. We had not given Caleb his mood stabilizer, Depakote, since Sunday evening. Depakote is also an anti-seizure medication and the doctor didn't want us giving it to him while we were there so it wouldn't interfere with the test. It turns out that Caleb's ammonia level was more than double what it should have been, so the doctor discontinued the Depakote immediately.

After spending four days and four nights having 24-hour monitoring of Caleb's brain activity, we were able to go home on Friday morning. It was a long week for me, but especially for Caleb. He wasn't allowed to leave the room. He watched more TV that week than I think he has watched in his entire life. Caleb's doctor came in Friday morning and gave us the official diagnosis – Complex Partial Seizures. It seems that Caleb's seizures are all in the right temporal lobe. Although he does not have the outward signs of seizures – jerking – he has been having multiple seizures multiple times a day. We left with prescriptions for three different medications, one on a daily basis and two on an as needed basis, in case Caleb starts having Grand Mal seizures that last for more than 30 seconds or two minutes.

Caleb was placed on Lamictal, which can also be used as a mood stabilizer as well. The only downside to Lamictal is that you have to titrate up on it very, very, VERY slowly. Based on the discharge summary that we received when we left the hospital, the final increase would not occur until August 18, 2009, the day after Caleb starts school and we started him on the medication on May 29th.

Since Caleb started the Lamictal we have seen a different child. There was about a week or so when Caleb would have difficulty processing things like what he would want to eat. He couldn't decide what he would want. We'd offer things that we know that he likes, but he didn't want any of them. One day we had an hour long meltdown because he couldn't decide want he wanted to eat. That has seemed to subside currently, but we have also seen a lot more compliance, especially when it comes to taking his medicine. He is offering to do chores, all by himself. If we ask him to do something, he replies that, “Sure, I can do that.” Watching how he is now compared to what we have been through with him since he was 15 months old, I just want to cry. We're seeing, what my wonderful friends in the CABF parents of young bipolar children have termed, “Sunshine,” which we have not seen in a long time!

When we went to Caleb's follow-up appointment, the doctor even commented that Caleb was calm.

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