Questions answered and others not

Time seems to move so fast and incredibly slow, all at the same time. How does so much fit into just a two week time span? Since we last wrote, Riley had his 24hr EEG, MRI and spinal tap done at children's, at the beginning of the month. We came out of that exhausted and very grateful Chris' boss gave him the time off work, right before our vacation. We headed down to Vancouver the morning of the 4th, with virtually no traffic. Even though the day involved packing my mom's car like a jigsaw puzzle and traveling, it was a very relaxing day and much needed. Riley was very happy to see his Nana, Papa and Uncle Brad.

The next morning we packed up again, this time a little lighter, and headed to meet Staci, Martin and Zeke for an overnight trip to the Oregon coast. Many laughs and talks we're had over coffee, lunch, dinner and much needed beer. Riley was pretty sleepy most of the trip, and enjoyed getting to witness more Zeke babble, and also retreat to a big boy bed where he slept with mommy and daddy that night. He was a happy camper, and a bed hog, no idea where he got that from....

Sunday we relaxed and headed to Mo's for some clam chowder and fresh fish and chips for lunch before heading back to Vancouver. The weather was amazing at the coast, and was another 20 degrees warmer by the time we reached Nana and Papa's. Guess it was a good thing Chris added our AC to the car puzzle! Unfortunately, after a relaxing weekend, that evening Riley started having an uncontrollable spasm/tremor. Started around 6pm during dinner and was still going significantly after 10pm, and he couldn't get to sleep. At this point we couldn't tell if it was a true seizure or a tremor (possible side affect of his meds). Can you hear my heart rate going up as this was happening?

We finally decided to take Riley into the local ER, because this just wasn't normal, for him. The ER got ahold of his medical records and consulted with the on call doc for Vlcek and it was decided to give him a little bit of Valium to help stop the shaking and get him to sleep. We then we're transferred via Panda Care Team (ambulance) to Doernbecher's Children's Hospital in Portland, because they were better equipped to care for Riley. He was monitored through the early morning because his vitals had been low and had been given the Valium. While there we started to decrease his ACTH from 80 to 40units and we're released on Tuesday. We spent that evening relaxing and recouping (Riley still shaking some, but not forever lasting that sent us to the ER) back at Nana and Papa's.

Wednesday we headed back home to get settled in before our follow up with Vlcek on Thursday. I have to say, it certainly wasn't our worst appointment in that office. As of right now, his IS is gone. The EEG was still somewhat abnormal but was clear of IS activity. This is why we jumped his ACTH med down in dose, and will slowly be tapering him off of that. He won't be officially done with it until early September, so until then we still need to have his BP monitored weekly and be careful with his lowered immune system. Sabril we are tapering much faster, because he's been on it much longer; he'll be completely off that by the end of the month. We've added another generic antiseizure med to the mix, slowly going up in dose, to help counteract getting off the other meds, and to maybe help with his tremoring.

Even though the EEG was clear of IS, it was still abnormal. Vlcek didn't dive into specifics on that, as we need to get him off both meds first and repeat the EEG. The spinal tap and blood work we're clear, but the MRI did show some abnormalities. Vlcek said it is probably from the changes in the brain Sabril has caused, but can't be 100% certain of course. So next step there is to get the meds out of his system and repeat the MRI to make sure. At this point he's still tremoring around (specifically his hands and head), pretty good sometimes, and not so much other times. Of course when he does, he's tired and it makes it harder for him to fall asleep. Vlcek isn't positive at this point whether the tremors are from him being on the meds for so long (irritability is a side affect of both, and could be presenting in the tremors), or if it could be related to whatever muscle problem.

For now until he gets off his meds and repeats some tests, best we can do is to keep him comfy and happy. They aren't harmful at this point, just frustrating. Our next step in testing is some genetic testing, which of course isn't cheap. So we are just waiting on the battle with insurance on those, then it's just some blood work and waiting on results. Until any upcoming additional or repeat tests, we focus on keeping him happy, that IS is gone (for now), and getting these meds out of his system. We've put PT on hold for about a month and will reassess then if he is going to tolerate it better then, he could certainly use it. The on going frustration of some answers but others still not answered continues, and probably will for awhile. Until then we snuggle, play and find ways to strengthen our boy. Big perk of tapering the meds, smiles are returning and we couldn't be happier!