Saturday, February 1, 2014

Modern Day Medusa

We are home and thank God!  72 hours spent with a child wired up and only able to be in her room or the playroom makes for a LONG 72 hrs. The EEG went ok but the results were quite weird and not at all what anyone expected. Such is life with Anna. Weeks before this EEG we began weaning Anna's tegretol. We did it over about a 4 week period and that went well. It was very strange that as her dose went down we were not seeing any seizure activity. She got her last dose of meds the night before we went to the hospital. We got there and I was a meeting with the NP and also told her about the leaky gbutton. Luckily they arranged it where that got switched out while we were there. That was nice because it eliminated another trip there. Anyway- so after the first 24 hours the Dr came to tell me the amazing news- her EEG was completely normal. He said he was thinking it might be possible that Anna had outgrown her epilepsy. His plan was to continue to monitor her for the full 72 hours and if the EEG stayed normal he would send her home off of medication. I could not have been more excited...or scared. It was clear that off of the tegretol Anna was a totally different kid.
Her memory problems were certainly not gone but they were so much better. For example, normally people will say ,"How old are you Anna?" and she will look at me or the person asking the question with a blank stare. Off of the tegretol she quickly piped up "I'm 6."  She finally was able to count to 10 without skipping any numbers. That is huge. So anyway I knew having her off of the tegretol could open so many doors for her as far as her memory and learning are concerned. Also thinking that maybe the epilepsy had resolved made me able to think about her future with a little less trepidation. But then there was that nagging feeling that what if it's not over?  What if this is the calm before the storm?  So I spent that evening really thinking and praying about it and knowing that I have to trust the Dr. I have learned that if you have doubts about the Dr then you need to move on. Dr. Hernandez is amazing and I trust him. So I decided to do what any rational person would do- talk to him about it. So I did. I talked to him about the seizure she had on her birthday which was December 3 which wasn't that long ago. I showed him Anna's teacher's description of the events that day.  She said,"As I recall, she was very hyper and excited about her birthday.  We went to lunchroom and began to eat.  I looked at her and she was staring off. I said her name a few times. She did not respond.  Mrs A was sitting next to her so I asked her to get Anna's attention.  She touched her arm to get her attention but no response. I called nurse. We laid her in floor until seizure was over (maybe 2 minutes).  We carried her to nurses office and monitored her until you got there."  
After seeing this everything changed and he said going off of the medication was no longer in the cards but trying a new medicine with less side effects was. Again I was sad and relieved all at the same time. There are so many weird emotions that go along with all of this. So she is starting on Lamictal. The dose escalation will be super slow to do everything we can to avoid Stevens Johnson Syndrome. Apparently slowly up titrations the dose reduces the chances. When I say slow I'm not kidding. It is Feb 1 and she will be at full dose on April 13.  So for so good but the dose is so minimal right now I wouldn't expect to see any side effects anyway. So that's how it went. I am so thankful for a Dr who sits down and explains and listens and who makes me feel a little less crazy. I always doubt myself and he is good to reassure me. I need that.  

No comments:

Post a Comment