Mikisa’s diagnosis

we have another diagnosis.  actually, the most devastating one so far.  Mikisa has ESES  (electrical status epilepticus in sleep). only  one half of one percent of all children with epilepsy present with an ESES pattern on their EEGs, so it is extremely rare.  basically, every time Mikisa goes to sleep, her brain continually seizes all throughout the night.  the seizures are not necessarily visible, but they affect her profoundly.

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here is some more information on this syndrome:

ESES is a degenerative form of epilepsy that causes constant and severe deterioration in neuropsychological functions, and language capacity can be particularly affected. children also may show a profound decrease in intellectual level, poor memory, impaired temporospatial orientation, reduced attention span, hyperactivity, aggressive behavior, and even psychosis.  motor impairment, in the form of dyspraxia, dystonia, ataxia, or unilateral deficit, is also a common disturbance occurring in this syndrome. 

the seizures in electrical status epilepticus during slow sleep are self-limited and disappear in the mid-teens. however most children affected by ESES live with chronic epilepsy. improvement in language dysfunction, mental retardation, and psychiatric disturbances generally occurs but is variable and individualized. the majority of affected children never return to normal levels, particularly in the verbal area and attention.

while this is a heavy diagnosis, and we are still trying to process what it means for our little girl, we have lots of hope.  she could have already gone through the regressive stage…or that regression could be happening right now.  only time will tell.  we have been referred to a specialist at Duke, so hopefully we will get some clarity and more information following that appointment.  for now, we have started her on more intensive nightly seizure meds in the hopes of controlling and reducing the “spikes” so that no more brain damage occurs.  please pray with us for healing.  we know God has big plans for Mikisa and we believe He will get us through this, however hard it gets.

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7 responses to “Mikisa’s diagnosis

  1. Love you, Christina. I’m sick today and moving to Nashville tomorrow, but I WILL call you back. Planning on talking to my dad about all this over dinner tonight. She’s the same little girl she was before this diagnosis. God has carried her through up until now against all odds and we will expect him to keep doing it. Kiss her for me and tell her to say “hot Didi!”

  2. Oh, I know this is weighing so heavily on your heart. There is NOTHING worse than having a sick child and absolutely nothing worse than feeling like you are helpless and can’t “fix” them. We will pray for healing, comfort and answers. Hugs.

  3. Finally atching up on this. Praying with yall Christina! I have heard “God of this city” multiple times over the last few weeks and every time I do it makes me think of you and Meems. Of sitting in that courtroom and hearing the words of God sung from Meems mouth: “greater things have yet to come come, greater things are still to be done” it was truth then and it is truth now. Our miracle working Jesus is fighting for you all and walking close. Greater things He will continue to do. Give that beautiful girl an extra kiss for me today!

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