Happier than ever

1 Dec

It always amazes me how so much can change in a couple of months.

Back in June I wrote a post entitled EEG Results.  I talked about how Ladybug was diagnosed with Lennox-Gaustaut Syndrome a rare form of epilepsy, and  that we were starting her on a medication called Banzel (Rufinamide).  She began this medication in early June and over the course of the summer we noticed that her smiles appeared less and less, by the fall it became a rare occasion to hear my little Ladybug laugh.  To  make matters worse, she started having these screaming/crying episodes where no matter what we did we couldn’t calm her down.

Essentially, my happy-go-lucky little princess was slowly disappearing and this little shell of a girl who was rarely happy took her place.  Not only was it absolutely exhausting, it was heartbreaking.

In the back of my mind I wondered if it was the medication that was causing this to happen, so I brought it up when we met with Ladybugs amazing pediatrician in October.  Fortunately or unfortunately, depending on how you look at it, Ladybug had one of these screaming and crying episodes while we were with her.  It helped ease my mind when the doctor was very concerned as she had never seen Ladybug like this.  She even asked to take a video of everything so she could discuss with the Neurologist.

We all decided that there was only one way to know for sure if these meds were the cause of all Ladybugs issues.  We needed to slowly wean her off of them and see if there would be a difference.

The entire process would take 1 month.  1 month and Ladybug would be completely seizure medication free for the first time since she was an infant.  (She’ll be 6 years old this Thursday)

After just two weeks we began noticing a difference in her moods.  The smiles were returning bit by bit each day.  We had school pictures taken at the beginning of the school year and they didn’t turn out that great so we opted for retakes. Retakes were taken when the meds had stopped.  The difference is beyond amazing. I will defiantly post them when they come in.

It has now been several weeks since Ladybug has been seizure medication free and I feel like I have a brand new child.  She is happy and laughing, but most of all she is responding to us.  She is really trying to communicate especially when she wants water (she will sign for water). Her teacher mentioned the fussiness during the school day has greatly decreased as well, and that last week when  Ladybug got fussy all the teacher did was have a chat with her and ask what was wrong.  Ladybug then proceeded to sign for water and all was well in the world again.

Even her sleep patterns are getting better.  Which this pregnant mama really appreciates. Especially since I have a little less than one week before the new baby arrives, and sleep will once again be a distant memory.

Here is a picture taken when we brought the kids Trick or Treating for Halloween.  Ladybug was the sweetest and happiest Dorothy ever, and her little brother was the most adorable Lion.



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