March / April 07 Update

Hi All! Things are going very well again at our home, but March was a pretty eventful month for us. During my spring break, I came down with flu-like symptoms with a fever of 103, extreme sensitivity to light, body aches, congestion, etc. We immediately sent Amanda to my parent's house so she could avoid exposure. Unfortunately, that strategy did not work as we were later to learn that people are the most contagious the 2 days before they show any symptoms.

To get to the point ... Amanda came down with the virus, but before she showed any symptoms at all, she had her first seizure in 1.5 years. I got a call from my mom at about 11:00 on Sunday March 11 (1 week after I first showed symptoms) that Amanda was throwing up. I raced down to my parents' house which took about 2 minutes total. Amanda was limp and throwing up and her eyes were stuck to the left (usually an indication of a right brain seizure). Because she was making no attempt to clear her airway, we did it for her and dosed her with Diastat, her anti-seizure medicine. The EMT's arrived a few minutes later and hooked her up to oxygen and continued to help clear out her airways as she continued to throw up. She was transported to our local hospital and was given intravenous seizure meds en route. When we got there, she was still seizing so they gave her a third dose. Her body temp went down to 93 degrees rectally and she continued to have wild eye movements. However, she started to be a little more responsive at that point so the ER doctor felt she was done seizing and called for the helicopter for transport to Raleigh where she could be under more advanced care. The helicopter was grounded due to weather so they sent a critical care ambulance with pediatric personnel from Raleigh to pick us up. In the meantime, I continued to argue that she was still seizing but the ER doctor believed she was done. Since her seizure was nonconvulsive, it was harder to tell that she was still actively seizing but I could see it in her eyes (but at least she had finally stopped throwing up).

Finally at about 5 am, the ambulance arrived and loaded us up. En route to Raleigh, the ambulance EMT agreed she was still seizing and dosed her with intravenous Adivan, which finally stopped the seizure (7 hours after it began). We arrived at Wake Med hospital in Raleigh where her neurologist reviewed EEG results and confirmed that she had stopped seizing. At this point, she entered an "altered mental status" phase and was transferred to Duke to ensure this status wasn't due to shunt issues. On the first day post seizure, she slept almost the whole day. On day 2, she awoke for an hour but was very tremulous and had trouble controlling her muscle movements. On day 3, she woke up, looked around, smiled and was back to her normal self. To make a long story somewhat shorter, Amanda has no sign of any brain injury from the seizure. She is back to her normal baseline and again progressing, and we are very thankful for God's protection over her.

In the days after her episode, we were comforted to be told that nonconvulsive seizures typically don't result in brain damage, which is certainly good news. We were also told that this seizure is likely a result of the virus lowering her seizure threshold and the good news is that it took a really ugly virus to lower it enough to bring on a seizure. She has handled colds very well. We were also given a medication dosage script that we take with us everywhere that tells emergency personnel what to give to stop the seizures and over what time period. Our neurologist felt that the original doses were too low and this script will help alleviate any confusion on dosage moving forward. So, we feel like we have a good plan of attack should this ever happen again. We have heard from some of Amanda's other doctors that this is just a bump in the road and that a seizure during a virus is nothing to get too excited about, so that is also reassuring. She did finally show the upper respiratory symptoms of the virus upon returning to Wilmington but she handled that part well.

Anyway, although things were a bit exciting for a few days, all is well now. Amanda continues to be full of spunk and life. She has an amazing spirit that just never gives in and she continues to be a happy and loving child. She has been doing great things since her return to Wilmington. She is following directions very well now. She puts blocks into a container and takes them out, stands and sits on command, picks up her foot and puts it down on command, lifts her arms etc. Her receptive speech seems to be ahead of her expressive speech (i.e., she understands more than she says). She continues to say her 7-8 words and does so in the proper context. She is also getting pretty quick rolling around the room to get things. She loves it when her big sis, Katie, (who is a WONDERFUL big sis!) reads to her and plays with her. Amanda and Katie are such blessings to us and we are so thankful that they are both a part of our family.

We are so blessed to have so many wonderful people in our lives who keep us lifted up in prayer. Thank you so much for all of your prayers and support. We are also blessed to have a great support structure of family and friends who care deeply about Amanda and our entire family. We hope you all have a wonderful Easter and wish you joy and peace during this blessed time of Jesus' resurrection. God Bless!
Susan