The part of the roller coaster ride I hate…
April 30, 2007 | Updates
The roller coaster we ride these days is a little different than those at amusement parks. On our coaster, we claw our way up every little inch and each one seems to take all the effort we can muster and a lot of time. And then there are days when, without warning, we slip and despite all our efforts to forget or at least ignore the deep valleys we’ve pulled ourselves up out of, the memories come flooding back in an instant. It almost seems that the farther up the hill we climb, the scarier sliding backwards is. It’s like a part of you just cannot stand the thought of going back to the places you’ve been before. Those are the moments you just have to hold on and understand that you are not in control and remember that God knows what He is doing even if you have no idea what He could be thinking. So, I guess what I’m trying to say is, if you ever pass by me on the side of the road and I’m crying my eyes out, you can rest assured that although I’m having a bit of a rough time on the ride at the moment, I am well aware that I am strapped in tight and I will be OK – eventually :).
This past Wednesday when I went to get Samuel out of bed for school, he was obviously not feeling well. He was wide-awake, but didn’t greet me with my morning grin. In fact, I couldn’t get him to smile. He could barely keep his eyes open and was not his wiggly self. I knew he hadn’t been sleeping well lately, so I let him go back to sleep. It is hard for me to know how much he sleeps because when he does wake at night, he is usually just very quiet and will lay in his bed until he falls back to sleep. I know this because there are nights when I have checked on him and found him awake and then come back a few hours later and found him still awake. Yet, he does not make any noise to let me know he is up, so I normally do not know.
Around 11 am, I pulled him out of bed to head to Salt Lake for our rehab appointment. He seemed much better at that point. I put him in the car and ran back in the house to get Nathan. When I returned to the car a few minutes later, something was wrong. Samuel was screaming, and he never screams. I tried to calm him down, but could not. I finally took him out of his car seat and walked around the yard until he was calm. As soon as I put him back in his seat, he started screaming again. I had NO IDEA what was wrong. He was completely inconsolable. I decided that it would be best to start driving and maybe the motion of the car would calm him. It didn’t. After about 15 minutes, I pulled the car to the side of the road and got him out. As I held him this time, I knew what was wrong. He was having myoclonus.
Myoclonus is a type of seizure. It is the startle that happens sometimes as you are falling asleep. Only imagine that you have a startle like that every 3-5 seconds and it causes your entire body to jump and all your muscles to contract and, in Samuel’s case, your right arm to fly up in the air and half the time hit you in the face, and you have no idea what is going on. That is what was happening to Samuel. I held him for a long time, but could not comfort him. I had not seen him like this for nearly 18 months and it freaked me out. It reminded me of being in the hospital just a month after his accident and how miserable he was. Some poor little man in his tractor drove by and stopped to make sure I was OK. I assured him I was, but I must have been a site with Samuel screaming and the tears streaming down my face. It was the part of the roller coaster ride I hate.
I finally gave Samuel a dose of tranxene in hopes of getting him to sleep. He cried and had myoclonus for another hour before he finally gave in. We continued to Salt Lake mostly because I hoped they could help me figure out what was going on. Needless to say, we were very late at that point. Samuel slept for the next 5 hours except for a few minutes in the doctor’s office. So, we didn’t accomplish much with the rehab doctor like I had hoped. She was able to assess his range of motion really well with him being so deeply asleep and she and I had a good chat about possible new seizure meds. The one good thing that did happen is we had to wait about 90 minutes for the doctor to fit us in because we were late and since Samuel was sound asleep, Nathan and I got to sit together and play just one on one. That is a rare occurrence and was fun to do. I kept Samuel medicated for most the rest of the evening and night, so he got a lot of sleep. I wonder if that was what brought the seizures on – lack of sleep. It also could have been the changes I had made to his diet. I don’t know that I will ever know. Sometimes it is very frustrating to have to guess.
I then spent the next 2 days calling my neurologist trying to get a prescription for the seizure med my rehab doctor had suggested. Amazingly enough, he never called me back. (Please read that last sentence with severe sarcasm!) I contacted the on call neurologist over the weekend, but he didn’t feel comfortable prescribing the medication without knowing Samuel. My rehab doctor didn’t feel qualified to prescribe it. My pediatrician didn’t feel comfortable prescribing it. I tried to get an appointment with a new neurologist this morning and their earliest appointment was July 10th. I figured my last option was to drive us down to Primary’s and check ourselves into the ER. Tom, however, decided he would rather lay into the secretary in the neurologist’s office. So, after letting her “have it” in lieu of our wonderful neurologist (sarcasm again) – who refuses to return phone calls – we finally got a return call (2 hours later). Needless to say, I kept the July 10th appointment with the new doctor, as we are COMPLETELY finished with our current neurologist!
So, we have a new medication – neurontin – to try and control Samuel’s seizures. I hope it works. Samuel didn’t attend school on Thursday because I didn’t dare send him. He had a fairly good weekend, but I slept in his room last night after he had one of the rare seizures I’ve seen him have just a few times where his entire face and upper body twitch. He had about 8 of his other seizures between 6 and 10 this morning. I didn’t send him to school again today. So, something needs to be done. This medication we’ve chosen has very few side effects, but is also not as effective as other meds with more side effects. I really hope it works so we don’t have to go to something that will be harder on him.
On the positive side, Samuel has been easier to make laugh the past few days. I think he is getting more ticklish. Good for me, not so good for him – hee, hee! Pray hard that this seizure med works with few side effects so we can get back to our happy little man!
Love,
The Jewkes
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