EEG Results

5 Jun

A few weeks ago we finally got Ladybugs 48 hour EEG results.  It was a lot to digest, and I wanted to try to understand as best I could before I gave everyone the update.

Ladybug’s neurologist personally called me to give me the results, explain them, and answer any questions I had.  It’s these small gestures that remind how fortunate we are to have such a great team of specialists looking after my little princess.

The Coles notes version of the EEG result is that Ladybug has a very rare and severe form of epilepsy known as Lennox-Gastaut Syndrome.  Basically it consists of numerous different types of seizures that are extremely difficult to control and for the most part drug resistant.

Two of the many types of seizures that they were able to catch were Myoclonic which I’ve mentioned before and auditory triggered seizures.  The auditory triggered seizures were particularly upsetting for me.  In hind sight she’s been having these for quite a long time and we didn’t know they were seizures.  Ladybug typically startles when she hears a loud noise, however this past year she zones out for a few seconds afterwards.  During the EEG the door on our hospital room would make a horrendous loud bang every time it opened and closed which would trigger these episodes.  Just for my own peace of mind I pushed the button and made a note of the time and what happened.  I’m so glad I did because they were indeed seizures.

With the new diagnosis of Lennox-Gastaut Syndrome, our original treatment plan of the Ketogenic Diet has been put on the back burner.  Ladybug will be starting a new med which is known for helping LGS.  Like all seizure meds it is hit and miss, however we’ll never know if we don’t try.  We will start Ladybug on Banzel (Rufinamide) next week slowly increasing her dosage week by week, while at the same time slowly weaning her off the Keppra.

With the help of social media I’ve found several different LGS groups who have been extremely supportive and are always there to answer any questions I’ve had thus far.  I’m very hopeful that we will find some form of treatment for the Lennox-Gastaut Syndrome that works for Ladybug. It would be really nice if the new meds work – but, if they don’t I just keep looking and exploring different avenues. Just as I planned to do before.

 

On a brighter note –  Ladybug will be finishing her first year of big girl school in 2 weeks.  I’m already trying to find fun activities to keep her occupied this summer.  We’re planning a huge road trip in August so that will be an adventure on its own.  Ladybug’s not so little brother is now 10 months old.  He has 5 teeth and counting, is standing up on his own, and I’m sure will be walking unassisted in no time.  It’s certainly a busy house and I absolutely LOVE every single second of it.

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