Saturday, November 29, 2008
Greetings from Minnesota!
I don't feel as if we have too much to update as things do seem to move relatively slow. Thurdsay night my parents returned home :( and friday morning my cousin Sara arrived around 11 am. (By the way, we've had a BLAST catching up; I told her last night as we were drifting off to sleep that I didn't think we'd had a sleepover for a long time!-prekids and premarraige for sure!-and that is over 12 years) Anyhow; friday Dr. Doesher came through and told us he didn't think that Matthew has infantile spasms. His EEG along with the video 'spasms' do not corelate together. He thinks he is having myoclonic seizures. Although I was happy to hear he didn't have infantile spasms, Dr. Doesher still cautioned me that he has a very 'disorganized, abnormal seizure pattern' and said it may be complicated to control. He wanted to start him on Keppra, which we did on Friday and he got both HEFTY doses yesterday. Consequently, he slept most of the day (and night too). He told us we should see improvement by the next day or twoThis morning when he came in, he asked if we had seen a decrease in his spasms. That was complicated to answer, because we had, but he also slept most of the day and he doesn't spasm during sleep. Unfortunately, he did not see any change in his EEG pattern. He said we would try it though tomorrow; but if we didn't see any improvement, we would move to Depakote and stop the Keppra. I think this will be what happens because he has been more alert today and has had numberous spasms.He also gave way to thinking Matthew has septo-optic dysplasia. He has a lot of the brain abnormalities that go along with this. Now, if I was actually blogging this, which I'm not, my mom is just cutting and pasting (thanks mom!) I would link it to some great site about it, but I haven't had the time to research it too much and I'm not about to expect my mom to try to figure that out. As we talked more, Dr. Doesher said that he should also have "hypothalmic-pituitary dysfuction"; but I know they tested him for that in the NICU and it came back negative. He said that we should still try to follow up with an endocrinologist in Lincoln, because he still could have had enough of my hormones in his body then and it might come back different now. He didn't see the priority of doing that here, though. If I understood him right, the significance of this diagnosis would be that he would have difficult to control seizures. I don't know the other significance of it; but I plan to by the end of the day. Those of you who know me well, know I'll be researching it as much as I can on the internet :)The unit has really quieted down. There were 5 dismissals today and only 1 admission. 2 people are going home tomorrow. So right now there are 4 kids and the possibility of just 2 tomorrow. It has gotten very quiet as 4 of the dismissals were 8-12 year old boys! Of the 4 that are left; our Matthew and another Matthew that has infantile spasms and is 11 months and two others! It's realy weird, there is not as much privacy here, everyone pretty much meets in the 'circle of the pod' and visits! The unit is set up in a circle fashion, with a room in the middle that all the kids play in (and the moms visit in) We've met a lot of nice people, and great nurses. We're really doing well. I'll keep everyone updated as I can; and I have some cute pics of Matthew to add when we get home.