Sunday, March 29, 2009

I wanted to update you all on Brooklyn and her seizures - or lack of seizures I should say! We have been debating (for a long time now) whether Brooklyn was having seizures or if they were just "Rett Spells." Our local neurologist was CERTAIN they were seizures because the the eeg reading and she saw the "absence seizure" in her office. However, we have since met with two rett specialists both of whom believe Brooklyn was probably not having seizures. Most Rett Girls will have an abnormal eeg and to most neurologists (who are not familiar with Rett) will determine they are and medicate, which is why Brooklyn ended up on Keppra. It was decided that the only way to be sure was to ween her off of the Keppra and see what happens. IF the "seizures/vaccant spells" return we will set up a 24 hour video eeg to be absolutely sure they are indeed seizures and need medication. Our hopes of course is that she will be seizure/medication free! Over the past couple months we have been slowly weening her off of her Keppra. Things have been pretty good. Today is day two of NO seizure meds!!! I have not seen any seizures/vacant spells. She does seem a bit shaky at times but our Rett girls can be like that. I hope she continues to do well off the medication, your prayers are greatly appreciated!!! I will let you know how it goes but we are definitely off to a good start!

14 comments:

Sam and Finn said...

We are so glad that you are off to such a great start! You are in our thoughts and prayers! We hope you can stay off for good!

Karlie Grace said...

Keeping our fingers crossed that she stays medicine and seizure free:)

Sara x said...

Sending anti seizures vibes. Livvy had very severe seizures and very frequent, hope Brooklyn's stay well away xx

Ashland Benner said...

Awesome, Brooklyn! You are in our prayers, always!

Grammy said...

Good job Brooklyn! Are you ready to go back to preschool tomorrow and see all of your buddies? I am. I bet Brody will be all tan! Good thoughts and prayers on the "seizure medicine free Beanie!"

xoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxox

Kelly said...

I'm glad it's going well and I hope Brooklyn continues to be improving! We love you guys!
Kelly, Steve, Kaelyn

Avery said...

awesome! I hope it is just the craziness that is Rett Syndrome and not seizures!

Brittney Withers said...

How exciting!!!! I sure hope everything goes well! That would be AMAZING to not have to take seizure medication! We will keep you in our prayers :)

The MacDonald Family said...

Brooklyn we are praying for you that seizures do NOT start. Keep us posted on how you are doing. Your friend Annie was just cleared of seizures and we are confident you are too!! Great big hugs from MI.

Chiot's Run said...

That's great, hopefully they don't start. I'm sure she feels much better not being on the extra medication. Hopefully she won't need it any more!

Cheffie-Mom said...

Woo hoo!! That's great news!

Get Butler said...

That is fantastic!

abbysworld said...

Abby has tremors and shakiness when scared or cold or excited. She also goes blank on me for 10-15 seconds at a time. I have been told it's "just Rett."
Good luck. We love you guys

Beth said...

Keep up the great work Brooklyn, we love you guys....