Update on Madalyn

Many people do not realize that seizures are not limited to the tonic clonic type (previously called grand mal).  They can be simple partial, complex partial, myoclonic, absense, and more.  These other types may be more subtle, but just as dangerous.  People can often talk during a seizure, and even remember a seizure.  For Madalyn, there is a certain blank look that I have seen at the start of her big seizures, and now more often in these shorter episodes. 

Last time I updated I had noticed a possible seizure on Christmas Eve.  A couple of weeks ago I saw the same look and behavior, but this time I video taped it.  At the time of the video  I wasn't sure what was going on.  She had just finished a meltdown, so I wanted to be sure I didn't lead her into faking anything.  But in hindsight once I re-watched the video it was clear that she was not faking it.  Also, it looks too similar to the previous events.  At one point the smile she gives me  is the same smile she gave during a longer seizure a few months ago. 

When, I showed it to her previous teacher, both her teacher and the assistant said "we've seen that look a lot lately". 

I sent this video to her neurologist and she felt like it was seizure activity.  She increased her seizure medicine again.

Also, because these events have increased in frequency since she started after Focalin (ADHD medicine), we tried Vyvanse for the past 4 days.  However, she is so drowsy on it, her neurologist said to stop it.   Tomorrow she will try Adderall.  The interesting thing is that ADHD medicines are stimulants that don't often make people drowsy.  This worries me that these are causing more spiking/seizures.  However, without the medicine, and since the onset of her seizure disorder,  she cannot focus enough to learn and her hyperactivity would make even the most patient person need a glass of wine. 

She has an outpatient (one hour) sleep deprived EEG at 8:00 am on Friday. 

Once I get the Tracing from this EEG I will be mailing her MRIs, and all past Tracings, etc. to the Cleveland Clinic for an E-Consult.  I am hopeful they will have some insight or something new for us to try.

Tonight she wrote in her journal that she likes her school.  She also wrote that she likes music and lunch.  I have resorted to sending nachos and cheese lunchables just to get her to eat at lunchtime these days!  THAT's why she likes lunch :)  But I'm very thankful that she likes her new school.  We both still miss our friends and teachers at St. Anthony.  She still does not know anyone's name in her new class.  That's just further proof that her mind is not working like it used to..but, I'm on a mission...