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.

5 comments:

Denise said...

Hey Jill! Glad to hear that you're there and that things are progressing. Just wanted you to know that a friend of mine has a little girl with a seizure disorder has been where you are and they LOVE Dr. Doescher. You are in great hands. I'm checking your blog a couple times a day to see how you're doing. Take Care. Denise

Mike said...

Hi guys,

I found your blog by way of a Google alert for Infantile Spasms. My name is Mike Bartenhagen and we live in Gretna, NE and also travel to St. Paul to see Dr. Doescher, he is great and we are happy we found him. Our son Broc was diagnosed with Infantile Spasms in July of 2002 and currently has the diagnosis of Lennox Gastaut Syndrome. I couldn't find an email address on the blog but if you would like to connect you can contact me at mike@blackcows.com or there is an email link on Broc's site at infantilespasms.com. I know you mention that you don't have the IS diagnosis but you are certainly welcome to join our IS forum (link on Broc's site) as I am sure you will share many experiences with our families.

Mike

Echoes of Mercy said...

Jill...SO very glad that you have been able to have family there with you! I know that must have been wonderful to have their support.

Thank you for keeping us all updated with your blog. We're praying!

Schaechers

Sherri said...

Jill-
sounds like a much better hospital stay than a lot of the recent ones! We've been out of town all week and was dying to hear how things are going!! Keep the updates coming...we are praying for ya!

Anonymous said...

Hey Jill
Thanks for a great time.. I am so glad we got to catch up.. Here is a little poem that I found on one of my caringbridge sites that I think is nice
“You Have Taught Me”
by Anne Maclellan

You have taught me patience
to rejoice in small gains which others take for granted.


You have taught me tolerance
to accept that your perspective is different and deserves respect.

You have taught me courage
to fight for you when no one else will.

You have taught me endurance
to go on when I feel I can’t anymore.

You have taught me humility to accept when I can’t make things better but can only be here for you.

You have taught me to love at a deeper level than I ever thought possible.