I just wanted to give an update on Lauren. She has been doing really well these past 2 weeks (No seizures). Two weeks ago we increased her felbatol medication. Dr. Tuxhorn from the Cleavland Clinic had us give her Diamox in addition while we waited for the felbatol blood levels to increase-which can take many days. The Diamox is an anti-convulsive medication that we have used on and off during periods when her seizures are bad-used like an emergency medication. We have been slowly weening the diamox this past week. Tonight was her last dose of the Diamox so we will have to wait a couple of days while that med gets out of her blood to see if the increase in felbatol is helping or if it was just the diamox that was helping. Time will tell! But overall she has had a great start to 2010. I was looking over her seizure log for these past few months, she has had around 25-27 grandmal seizures for this year (mostly between Feb 4-Feb 21st). I guess it is all perspective, when she was in a really bad status episode in the hosptital a little over a year ago she had over 28 grandmal seizures in one day.
This past week Lauren had a follow-up appt with her neurologist at Primary Children's. No new changes or information. I have to get refills of her medications but other then that nothing too productive. I did ask his thoughts on the likelihood of Lauren's development progressing if her seizures stop. He said, "kids like Lauren will progress to some extent but will never be "normal". I don't know why that is still hard for me to take in. I have witnessed her go from a total "normal" 2 1/2 year old to a very behind 4 1/2 year old. Her local Neurologist is really a kind and caring doctor, I just need to learn to stop asking questions that they really don't have the answer to. Then I can just focus on Lauren reaching her own potential and stop comparing her to "normal".
This week Lauren and her sisters have the princess tea party and on Saturday she get to go make her wish at the wishing well. I will post pictures, it should be a fun week.