Tuesday, May 26, 2015


When I first began to date Sam we both completed the Myers-Brigg's personality profile.  One of the components revealed that I am a Decisive Introvert.  When it comes to dealing with change, if changes are suggested, I check them out against the big picture, and if they are necessary I will quickly move to implement them.  However, if changes are not a fit, then I will "dig my heels and become an unmovable opponent".  

I really respect Sonya's neurologist and I believe she is a great doctor.  She has spent years studying about the brain, how pathways communicate, and about a multitude of neurological disorders.  She has learned about epilepsy and knows about medications and side effects.  Sam and I have followed her lead thus far in Sonya's journey and we have listened to her recommendations regarding treatment.  We had been on the same page, until today.  

Today, her doctor asked me about Sonya's seizure activity and I told her how things have been going.  While Sonya is not seizure free, she is at a good place, having 1seizure every 24-48 hours.  From where we started, this is amazing.  Her neurologist went on to say we have room to move up on her medication, and should we give the newest one a little bump to become "seizure free?"  It might be unfair of me to say her neurologist has not researched CDKL5, however, by a simple google search you will find...

"The common features of all female patients with CDKL5 gene mutations included refractory seizures starting before 4 months of age"  

I had a multitude of emotions occur within me all at once. Anger, disbelief, frustration, sadness, panic, disappointment to name a few.  Then the questions flew into my head: Is Sonya just another patient of yours with epilepsy? Weren't you the one telling me, the less amount of medication a child can be on the better? Do you know anything at all about CDKL5? 

I listened to her backhanded justification of how she just thought we would want Sonya to be seizure free since she is doing so well and not having side effects on the medications.  I listened to her, nodding my head, and then I said "I have been on the CDKL5 support group, and the thing is...all the parents who have children who were diagnosed later in life, ALL state their one regret was giving their children so many medications so early on when NOTHING is going to stop the seizures".  Phew...Instant relief.

It was so hard for me to have a moment of clarity when she presented the information the way she did.  It was really difficult to tell her doctor, "Thanks, but no thanks". It is scary to advocate for Sonya.  I have not spent any time in medical school.  I don't know very much about the brain.  I don't understand everything about CDKL5.  I don't know what the future holds.  But I do Sonya.  I know she would be proud of her momma.  And I know her neurologist has met her unmovable opponent.

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