Madalyn update

Madalyn had a possible small seizure during Christmas Eve Mass.  She was being fidgety (normal) in mass and then she layed on my mom.  Her eyes were opening and closing (slow flutter) so I thought she was pretending to sleep.  Since she was finally quiet and still I told my mom to let her keep pretending.  About 3 minutes later she sleepily changed positions.  I had been suspicious since she first layed down, but I was getting more concerned so I asked her where she was.  She told me church.  I waited another minute and asked my mom if she thought she could stand.  My sign that it is a seizure has been when she cannot stand during an episode.  We decided to leave church and see if she could stand.  The first few seconds in the church foyer I don't think she could.  She had a dazed, confused look.  We were headed to the car to get the Diastat in case it progressed, but then she came out of it and asked to go back to church, so we did.  If it was a seizure, it would be a simple partial seizure since she did not lose consciousness and she remembers the whole event. I have left a message for the neurologist to see if she wants to adjust her medications, or schedule an EEG monitoring.


 In August Madalyn was doing much better because we had gotten off Keppra and onto the therapeutic dose of Depakote.  Her teacher thought everything was fine.  She started taking tests in first grade, and it became apparant that she was not grasping concepts.  A pivotal moment for me was after working with Madalyn over the weekend, I emailed her teacher and said "is it supposed to be this hard?".  Her teacher, replied, "no, it is not supposed to be this hard".  I felt relieved that my concerns were validated.

I emailed her neurologist and her neurologist suggested we try ADHD medication because strokes and seizures often have problems with attention and hyperactivity.  The first few weeks were awesome.  She went from getting in trouble nearly every day at school, to being a model student.

A few weeks later, I realized it wasn't just that she was not gaining academic concepts, she was losing them, along with the ability to remember lyrics to songs she once knew.   I also realized she was unable to follow simple conversations.  I was panicked.  When I asked her teacher for her insight,  she told me that Madalyn works 10 times harder than the other children, but can't grasp concepts. 

I researched all her drugs (as I have many times) and decided she likely had the side affects listed for  Depakote of "memory loss, confusion, and dementia".  I was also concerned that the Focalin may be causing more spiking.  After trying unsuccessfully to get in touch with her neurologist, I made an appointment with our pediatrician.  He was also concerned, and agreed to call the neurologist for me the next day.

The neurologist felt it was not likely that Depakote or the Focalin that was causing the issues, but instead that she was likely having more seizure activity than the EEG showed.  Therefore, she suggested we add Vimpat to her seizure medicines.

I'm happy to say her neurologist appears correct.  She is again able to reason through some easy addition and subtraction, as well as sing songs.  She seems much sharper, and seems able to comprehend our conversations. I am, however, concerned that she may have had a seizure on Christmas Eve on the therpapeutic dose of two seizure medications.  I left a message for her neurologist and will post her thoughts when her nurse calls.

During the months of regression, we had a neuropsychological evaluation.  At that time it was found that she may need modified curriculum.  I initatied a ruling for a 504 plan  from Madison County to change to St. Richards Special Kids program. Because her issues fluctuate, I do not know the extent she will need the services.  But, I feel it is best for Madalyn to have an IEP and support services available when she does need it.  And lastly, I want the support and community of the "special kids" program for Madalyn and me.