For the last 1-2 weeks or so, I've noticed some new things that Matthew is doing; neurologically that is . I've noticed that he has started having seizures again, although not as many as before. I haven't seen him smile in over 2 weeks and his sleeping patterns have once again worsened. By worsening, I mean that I am getting VERY little sleep at night, AGAIN! Matthew tends to be up late and then wakes frequently through the night. The biggest thing I've noticed is some weird leg jerking. As soon as I saw it, I knew what it was. I forced myself not to believe it though, until I talked to the doctor. Neurology is not one of my favorite areas in Matthew's care. I don't ever feel like things are handled in a timely fashion. Now, that may be an incorrect assessment; but I'm not used to this 'wait and see' attitude. If I see something abnormal, my expectations are to have the testing done within 24-48 hours and see the doctor the same week. Not so with neurology, atleast in Nebraska. I called about this and they seemed pretty liaze-faire about the whole thing.
Neurology RN: " I don't want to inconvience you, do you just want to do the EEG in three weeks when he sees the neurologist?"
Me: "I'd like it done as soon as possible, I'm okay making a separate trip. I'd really like to have this taken care of."
Neurology RN:" Well okay, but I don't want you to have to make a separate trip, only if your sure."
Me: "I'm sure;I want this resolved."
So we get an appointment for today and this conversation happened 1 week ago. And we don't see the neurologist for 2 more weeks. I'm just not patient, I guess.
So today we have the EEG. The technician put the electrodes on and immediately I knew something was wrong. This is similar to what the screen looked like:
And just for refence, this is what a normal EEG should look somewhat like:
So, I'm no rocket scientist, or EEG reader for that fact, but I knew it WASN"T right. The technician calmly looked at me and said: 'I need to go wash my hands, I'll be right back'. Now I'm also NOT an idiot! No hand washing was not needed-this was Matthew's third EEG and NEVER did they leave the room. Quite the opposite, they need to document every movement he has while it's running, like eyes open, eyes closed, sucking on pacifier; etc. I've also used a similar line myself to excuse myself from the patient room, without sounding worried-only to call the doctor and tell them some important information. So I knew something was up. 5 minutes later (that was an intensive hand scrubbing) she returned. Now, she either has a case of over-active bladder, diarrhea, OR she called the doctor. I chose the third option, and I was correct. I said, " hum, I don't read these everyday, but that doesn't look even close to being normal." The technician said, "well, since you said that, I just want you to know, I've called the doctor and she may be showing up any minute." There, that's more like it- a bit of truthfullness. Well she didn't show up (I learned later that she had a packed schedule at the office) so the technician said that Dr. Wright was going to look at it and give me a call. She said that just to be sure, I should stay in town for a couple of hours till she called me.
2 hours came and went and no call, so off to home I went. Finally, at around 4 pm this evening, I recieved a call. The nurse said something to the fact of " Dr. wright has looked at the EEG and would like to start a new medicine, the person who officially reads our EEG's won't be in till Monday, but she's quite certain that these are Infantile spasms." My heart sank. I knew it, but refused to believe it. But it's true. I know a little about infantile spasms from my blogger friend Lisa , but have not yet allowed myself to think about it. I don't have enough information to give you right now, but I'm starting my research effective today. Unless you want to wait for my synopsis, Lisa has a link on her blog for more information or you can google it. I think it's a pretty cruddy thing and I'm not excited to learn more about. But information is power and that's how I've tackled everything in the last 9 months; with information.
For those of you who know me in 'real-life', please excuse me if my attitude sucks or if I'm a crab. It's not on purpose. I promise my true identity will emerge again, but I'm just going to ask for forgiveness early, because I know I won't be myself. On top of this information, I've also just now for the first time been processing some information that was given to me just prior to Matthew's discharge from the hospital and I will blog about that later, just not now. The combination of that information sinking in and this new diagnosis has put me a bit over the edge mentally.
We won't see Dr. Wright for 2 more weeks, but will be starting this new medication immediately. Please pray that Matthew tolerates this medication, that will all the medications he's on that he won't have any side effects and that this will be the trick for him. Pray that his neurological health surpasses that of what the doctor's are predicting. Please also pray for our family. The other kids don't really get it; but they see our heavy hearts and know something is up.