I finally got the weebly app on my iPad! Now I can update more often! I'm so excited! Lol. Now if they will just make the app for android too....
Its hard to believe how much has happened in the last month... actually in the last week. It has been so crazy around here I feel like I've barely been able to catch my breath. I guess I will just type it as I remember things..
After we decreased his lamictal - he started having more of the arm/shoulder/facial twitching and there were a few occasions where he was stumbling and just 'off'. So the Dr and I discussed this and decided to increase the lamictal again to see if the rash really was from the meds or if the timing of the increase of the meds and the rash were just coincidental. So far we are up to 100mg in the morning and 75 at night. Tomorrow we increase to 100mg 2x a day. So far - no rash. We will contintue to monitor him closely for any signs of rash. We are still unsure if the twitching is purely that - a twitch - or if it is in fact seizure activity. I am quite certain that the stumbling around is seizure activity though. He has done it twice lately - and hes fine one minute and then can barely walk and very clingy the next. Its very upsetting to know that he is scared and doesn't know whats wrong- and not being able to do anything to fix it. All we can do is comfort him during these times. Last Monday we went to Duke and Phillip was sedated and had EEG leads attached. This was for a 96 hour ambulatory EEG. We are hoping to find out if the twitching really is seizures or not - and also see if he's having any that we don't know about or in his sleep.... So we watched him closely and pushed a button whenever he had any twitching, eye rolling, or change in state of awareness. A couple of the days we only had a couple of button pushes and then a couple of the days there were 5 or more. I don't want him to be having seizures (obviously) but right now I just want answers. So on Monday he was hooked up and they gave me batteries and told me to change the batteries in 24 hours and come back on Wednesday to get his leads checked and to download all the readings at that point. On Wednesday we drove back to Duke and they did what all they said and reattached a couple of leads that he had pulled off when he got mad at me. They changed the batteries and said nothing to me about changing them again before we returned. Apparently - they screwed up and I was supposed to change the batteries on Thursday evening, as well. But I did not. So Friday morning - while still attached to the EEG - for the first time ever - Phillip had a complex partial w/ secondary generalized seizure.... And yes, the batteries were dead. Aggghhhhhh!!!! At 617 am the batteries went dead and at around 720 - Tory said "Mom, whats wrong with Bubby?" and I look in my rear view mirror to find him staring so hard to the left that his head looked almost backwards. Within 3 minutes he was convulsing. I stopped the van long enough to carry him -haphazardly- to the front seat - and then we sped off to the emergency room.... Only we didn't make it there because he did something else he's only done once before. He stopped convulsing- with no medication or medical intervention. He just stopped and went to sleep. I didn't know what to do. I was so afraid he would start back but then I didn't want to take him to the hospital where he would be poked and prodded for no reason, either. So I prayed and then headed to Duke - where we were already late for our appt to have his EEG leads removed. By the time we got to Duke - he was perfectly fine - as if nothing happened. Friday morning he had his leads removed - but we were due back at Duke at 7 pm for a sleep study for him so we decided to just spend the day hanging around Durham. We had our first Mommy/Son day out in a LONG time and we both thoroughly enjoyed it. We went to lunch and 'talked' (which means he watched a movie and told me all about it while i ate) and then we walked around Wal-Mart and looked at all the things we'd like to have for Christmas. Then we took a little nap in the van, had dinner at the hospital cafeteria (they have the best pizza and sandwiches), and we walked around the hospital looking at art, photos, and spreading Christmas cheer (who can resist smiling at a cutie in a santa hat and being pushed in a wheelchair?). We got to see the Christmas tree and Phillip loved it - of course. Then it was time for the hard part.... the part no one prepared me for... When we got checked in and ready for bed - the tech comes in and tells us that Phillip has to have a full set of leads - which basically meant everything we had had taken off that morning - had to be put back on... while he was awake. AGGGHHHHHH!!!! It was as much a nightmare as you can imagine. He screamed, cried, hit, threw himself around, head-butt me, and was a general pain in the butt. Somehow though - we got those leads back on him. It was awful to do - but we needed to have the test done to see if we could find out why hes not sleeping well. We finally got the leads on and a few other peices of equipment that I thought he would tolerate while he was awake and then we snuggled up to sleep.. only I didn't get to sleep. The tech informed me that i would need to stay awake to make sure he didn't pull anything off during the night. Oh my! I was already exhausted. The thought of staying up all night was almost enough to put me over the edge! But I made it most of the night. Phillip woke up around 4 am and I got to go to sleep then. After Phillip fell asleep - we had to hook up his breathing monitor - which is like nose-oxygen things and then a tube that goes into his mouth, as well. And he had to have a puls-ox put on his finger. I have no idea how he slept with all that stuff on - but he did for 5 hours. Of course he didn't snore (of course) but at least they could follow his breathing and his sleep patterns. And also monitor for seizures in his sleep. She had to come in the room a couple of times to check on him because his respirations had dropped too low - but I'm not really sure what that means in the grand scheme of things. Anyway, we should have test results in some time later this week from both the EEG and the sleep study. I will post the results when I get them. We had an appt with his neurologist last week, as well and he answered alot of questions for me - but i don't have everything in front of me - and this has become a really long post - so I will type those Q&A up next time I get on here. I am trying to figure out how to post from somewhere other than my laptop (which is broken and hooked to my TV screen) but I'm not having any luck so far. Hopefully i will figure it out soon and be able to post more frequently. I hope you are all doing well and that you are also remembering the reason for the season... God Bless, Misty |