Monday, January 26, 2009

Update

A couple of months ago I posted a blog about my daughter Bug. Since then we have had some updates and some considerable improvement. To recap Bug has what are called complex partial seizures. That means that her seizures are only in one very small part of her brain, and are practically undetectable. The only reason we even figured out that she was having them at all is because she had an amazing 4th grade teacher who noticed them and was actually smart enough to say something to us. Her last EEG showed that she was having them about every 5 to 20 minutes, and they only last about one to two seconds at a time. This isn't the kind of seizures where she is laying on the floor and twitching around, all she does is kind of stare off into space and sometimes blinks and touches her head. Like I said practically undetectable. In fact she was misdiagnosed a few years ago as having ADD instead which I guess is a common problem. 

Flash back to one year ago... Bug is on a medication that was a complete nightmare. This particular caused some massive cognitive dulling. To put it simply, we lost Bug for a while. She forgot how to read (her favorite thing, after mario kart that is) she dropped down to a first grade math level, and she forgot how to use the bathroom properly. She was in 4th grade and having to use pull-ups all day every day. The worse part though was that she was gone. Bug has this wonderful bubbly personality, and all of the sudden it was like she had been replaced by a monster. The good part was that it was short lived, the bad part was that this happened right in the middle of the school year. So the child that was already behind simply because she is who she is, is now even further behind. Thanks to some wonderful pieces of legislature that were passed several years back (No Child Left Behind) we aren't even allowed to hold her back to actually learn the things that she missed. 

So the whole point of this particular post was not to whine but to update. Part of the problem that she has is an incontinence issue. We have believed for some time that it is related to the seizures, but the doctors have not been convinced. This particular issue comes and goes so it is hard to decide either way. She had a urologist she sees and is on medication for this, but it doesn't really work very consistently. She was having a great deal of problem with this issue a few months ago and it just kept getting worse. We finally took her back into the urologist and he increased her medication but it didn't seem to be helping. So we took her back into Neurology instead. We explained the problem and how we thought it was related and they decided to increase that medication as well. BINGO! Wow, the change was almost instant! She has always had a problem with bed wetting and I figured that if she was related to me that was just a given, but the day time wetting was very frustrating. Well both of those things have pretty much cleared up. We went from getting her up three times a night to go to the bathroom to only doing it once a night now, and the day time wetting has almost completely stopped. I can't tell you how much of a relief this has been for us. I know it is really helping her to feel better as well. The best part is that there has been a significant improvement in her school work as well. We didn't expect that! This really is an answer to a lot of praying. Once again we owe a debt to medical science! Who knew!

1 comment:

The Campbell's said...

That is so awesome Sarah!!! i am so glad the Bug is doing much better. Catie goes in tomorrow for her urology testing. I am so not looking forward to that.

 
Blog Widget by LinkWithin