A modern day miracle

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Rosalie went to school two days during November.  Only 2 days.  Between the ER trips, doctor visits, hospital stays in 3 separated cities for video EEG monitoring, general exhaustion, and the Thanksgiving holiday break she racked up a whole 12 hours at school.  I am very blessed to have a school that will work with us and not penalize Rosalie for her missed attendance.

Rosalie’s struggles last month started when she had another morning of  ‘seizures’ where she couldn’t stand up straight and I had to dress her and carry her to the car for school, which was a waste of time, seeing as how she just spent the day laying on her beanbag recouperating from the seizures.

That day, her neurologist increased her anti-seizure medication.  She ended up having a horrible seizure in the night, landing her in the ER.  You can read about that in this post.  About 12 hours after coming home from the hospital, she had another episode that was severe enough to use rescue medication on.  And then less than 24 hours after her first ER trip, I was administering her second emergency rescue medication and calling the ambulance.

Rosalie was admitted to the hospital for observation and an extended video EEG.  She had one episode during this monitoring that looked like a less severe seizure than the ones that had sent her to the ER.  The doctor said that it was a possible frontal lobe seizure.

That was her last seizure.  November 2, 2010.

She was sent to Tampa General Hospital for a 3 day video EEG study, in which she was weaned off all her anti seizure medications.  During that time she had NO seizure activity at all.  No odd brain spikes, sharps, epileptiform discharges of any type.  No suspicious staring episodes, no dropping or falling over.  No stiffening at night.  No nothing.  After the third day, they increased her medication back to half it’s previous levels and kept her for 2 more days.

I have to admit.  I was conflicted.  Our 3 day video EEG turned into 5 days and I was downright disappointed that there was no seizure activity.  It’s not that I wanted her to have another seizure, but after all that Rosalie had gone through, I wanted a professional to see it and tell me that I wasn’t making all this up.  This is a commonality that most of us moms of special needs children go through.  The conflicted thinking that makes us think we are being looked upon as nervous nellies, overprotective moms, or hypochondriacs.

So after the 5th day with no suspicious activity on the monitors, they shut it all down and sent us home.  They requested that we give her the same levels of medications that she was on before arriving at the hospital.

This is where I made a very important decision as an informed mom.  I decided that I would keep her on the half levels of medication that they had her on the last day in the hospital, and not increase it until the follow-up appointment with my local neurologist (which was only one day away).  Luckily, my neurologist was ok with my decision because in less than a month we were to have another video EEG.

Fast forward three weeks.  Rosalie is seizure free still, and goes to Orlando for another 3 day video EEG.  This time, again, there were no suspicious episodes.  No spikes, no staring, no epileptiform discharges or slowing.  Every day the doc would come in and say “maybe we’ll get something on the monitor tomorrow” and my response was “I am choosing to believe that she is healed and will never have another seizure”.  He just smiled and said “OK then!”

Upon being released from that 3 day study last week, I decided that I was ready to take the plunge and wean her totally off the anti-seizure medication she has been on for over 7 years.  She hasn’t had any seizures or odd happenings (such as morning jitters, losing her words, freaking out at night and refusing to sleep by herself).

I am a mom.  A mom that has faith that God has been carrying us along, helping guide my decisions, keeping Rosalie safe through all this mess.  He has either allowed her to be healed completely, or has allowed her to have  a brief respite from the heavy duty drugs that she’s been on all these years.  If it happens that she starts having seizures again, I will no doubt work with the neurologist to get her on another medication.  But at this point I am choosing to believe that she has been healed.  At least for a time.

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2 thoughts on “A modern day miracle

  1. Wow. Just, wow. That’s fantastic news, I’m delighted for Rosalie, and you, and the entire family! Have a happy Christmas, I’m sure these news will make the holidays all the sweeter 🙂

  2. What a hopeful turn of events. For all of you, I hope this side of your struggle has ended. Those heavy meds are not easy for a little girl. Watching those seizures are horrible for parents. I wish you a very Merry Christmas with this great turn of events for your family!

    Tara

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