thief in the night

last month, Mikisa had another 24-hour EEG. it seems like with each of these tests,  the all-too-familiar cloud of anxiety surrounds me and i really struggle with fear of her epilepsy.  since Gracie’s birth, i have been able to conveniently ignore the fact that Mikisa has a very serious diagnosis.  if i’m being honest, it has been nice pretending that things are normal and our girl is healthy.  she is doing relatively well physically and behaviorally.  and she is slowly progressing with her speech and cognition.  so i guess it’s easy to forget what is going on inside her brain.  but the fact is, she continues to have subclinical seizure activity every day and night.  sadly, her epilepsy causes her brain to more or less erase itself while she sleeps…hence the lack of progress academically and the huge delay in her development.  a few weeks ago, i was called in to her school because of a suspected seizure on the bus…so this monster is never far away, even when i like to pretend she doesn’t have epilepsy.

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every night we plug in a video monitor and watch Mikisa as she falls asleep.  she sings and claps and puts on a great show for the camera.  but we watch and wait for a seizure, the theif in the night.  we give her a lot of medicine twice a day.  we have only forgotten one dose in the past two and a half years since she started taking it.  we both know too well what could happen if we slip up.  i panic when the pharmacy doesn’t have the pills and several times we have had to drive all over charlotte looking for her valium.  she is on three very strong medications, each with a long list of side effects.  but, as her neurologist said, the effects of untreated ESES would be far worse than any potential damage caused by the medicine.  so the medication game continues and we hope and pray that we are making the right choices with her care.  each night, i pray that God will protect her and keep her safe through the night.  each morning, when i go in to wake her up, i hold my breath a little until she rolls over groggily.  it’s hard being on constant seizure watch, and knowing that because of her diagnosis, she is at much greater risk for Sudden Unexplained Death in Epilspsy (SUDEP).  something we don’t like to talk about [or even think about].

a few weeks ago, our neurologist called with some very disappointing news.  Mikisa’s EEG is bad. really really bad.  she is having spikes all throughout the day and night, some of them lasting up to 10 seconds.  he said it is amazing she is doing as well as she is clinically with the pandemonium going on in her brain.  he said that every day is like a marathon for her brain, and he is amazed that she is able to stay awake throughout the day.  he is very concerned about this recent development and doesn’t understand why things are worsening.  it’s never good when the neurologist is baffled…basically his biggest point is that her brain is very vulnerable and if we don’t get better seizure control soon, we could see deterioration and/or clinical seizures.

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so in a way i feel like we’re back at square one.  we have to go see an epileptologist because our neurologist really feels like Mikisa’s case is “too complex” and he wants us to get a second opinion.  this will be our 7th neurologist in less than 3 years.  my head hurts just thinking about that.  but we are hopeful that with a better plan in place, we will start seeing some real progress cognitively, and our girl will be less tired and confused.  i often wonder what it would be like to have a brain that is constantly seizing.  she deals with it incredibly well, and we are thankful for her determination and positive attitude despite this horrible condition.

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i’m still learning to believe that God has everything under control.  that He knows about her epilepsy and knows how bad her brainwaves are, and that he will keep her safe while she sleeps and we sleep and we can’t do anything about it.  please join us in praying for wisdom for the next steps in her treatment and complete freedom from seizures for Mikisa!

 

 

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3 responses to “thief in the night

  1. Have you looked into the ketogenic diet? I know many people (including doctors!) hear “diet” and think it’s snake oil, but this diet has a well established, reputable research base and known efficacy for hard to treat epilepsy. I have known several children who had out of control seizures despite heavy medications- and they responded to the ketogenic diet. No seizures. The diet was used effectively before medications were developed- and then it fell out of favor as a viable option. Many physicians are now well versed on medications and may not be familiar with the ketogenic diet. They also may perhaps subconsciously dismiss it because it is a “diet”. I suggest that second opinion (8th opinion?) might be with a specialist in the ketogenic diet. It is by the way a pain to follow, but could be well worth it. And medications can be taken at the same time.

    • yes, we have definitely looked into the keto diet. apparently, it does not work well for kids with ESES. thanks for the suggestion!

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