Status Epilepticus

"A potential life-threatening condition in which seizure activity lasts longer than 30 minutes and the person doesn't fully regain consciousness or mental awareness during that time."

Last week, Aliyah gave us quite a scare during an ABR therapy-training trip in Mexico.  Randy, Aliyah, and I had finished our 4th day of training with one more to go.  At midnight, I woke up to kind of a gurgly, wet breathing sound.  Aliyah was sleeping right next to me in bed on her Boppy pillow.  She was laying on her side.  As I bent over her, I noticed that she had thrown up and had her face in it.  I quickly picked her up and wiped out her nose and mouth so she wouldn't aspirate it.  She continued to vomit a couple more times, so I just held her forward, face down to keep her air passage as clear as possible.  When I thought she was done, I flipped her over to get a good look in her face and comfort her.  The first thing I noticed was that both her eyes were directed up and to the right.  We talked, sang, jostled her and could not get any response from her; she showed no emotion.  For those of you who haven't met Aliyah, you must know that she is very responsive to people.  She is normally very alert and aware of her surroundings and will turn towards sounds and voices and will give the most heart-melting smile at the drop of a hat.  The other things we noticed were her left eyelid fluttering and spasming as well as the right side of her mouth.  She was drooling excessively.  Her left arm and hand were spasming continually.  Her breathing sounded odd, as well.  I was so scared!  What was going on with my baby girl?  We were in a hotel room at midnight in Mexico with our daughter having her first major seizure and no medication to give her to stop it. 

By the time a doctor arrived in the hotel lobby to check her out, she had been seizing for an hour.  He was not comfortable prescribing medication for her without her being seen, so we ended up taking a taxi to the ER of a private hospital.  By the time she was given emergency medication (Diazepam), she had been seizing for an hour and a half!  She was completely unresponsive for the first 30 minutes of the seizure and in and out of awareness after that.  Thankfully, the medication worked quickly.  They put an oxygen mask on her and kept an eye on all her vitals; everything stabilized nicely.  I was encouraged as I saw some of her typical CP movements returning.  She often looks like she is "swimming" with her arms, so I was glad to see her right arm doing what is "normal" for her.  Unfortunately, I don't think the neurologist at the hospital was very familiar with Cerebral Palsy.  He told me that this was "a very severe case" and that her condition was very critical.  He planned to admit her to the Critical Care Unit where he said she would stay for at least 48 hours, probably 72 hours or maybe more.  He wanted to run an EEG on her, get a Cat Scan of her brain, do a bunch of blood work, check for infection, etc.  I told him that I could get him the detailed notes on the results of her past MRI's, but he said that he didn't think it was necessary at that time.  Based on this and some other comments and questions he had for me, I just didn't feel good about keeping her there.  I just wanted her stabilized, which she was, and to get a prescription for anti-seizure medication...just enough to get us home and back up to Duke Hospital.  Randy, along with our Spanish-speaking friend who also had a young daughter with CP, approached the doctor and let him know that we wanted to have her discharged.  The doctor was not happy.  In fact, he told my husband, "You are the parent.  I am the doctor."  Neither Randy or myself are confrontational people, but let me tell you...those are fightin' words.  Unfortunately, they wouldn't give us any anti-seizure medication and what they had already given her would wear off in about 6 hours.  So, after a couple of hours and $935 later, we were happily back in the taxi heading towards the hotel. 

We were unsuccessful in contacting Aliyah's neurologist until the following morning.  Around the 6-7 hour mark, she started having what the doctor believes are infantile spasms (seizures that last only a second or two but they usually occur close together in a series).  We had seen these seizing episodes in September and had actually taken her to the ER because of our concern over the frequency at that point.  However, the doctors could not seem to agree whether they were actually seizures or not and by the time her EEG was done over a month later, she was not exhibiting the symptoms anymore.  So, back to Mexico, Aliyah's neurologist attempted to call in a prescription to one of the local pharmacies.  However, because it was an American doctor, they required a written prescription...but didn't have a fax machine.  The doctor ended up faxing it to the hotel so we could walk it into the pharmacy.  We were able to get a bottle of Keppra, the maintenance medication.  We found that Diazepam (Valium), the emergency medication, was difficult to get a hold of because it is a controlled substance.  We ended up buying one vial of it from another friend of ours from the ABR therapy training who also has a daughter with seizures.  Since starting Aliyah on Keppra, she has had no further seizure activity.  Her doctor wanted her to be seizure-free for 24 to 48 hours before returning home on the plane.  So, we ended up returning home on December 1st as planned.  It took about 2 days for Aliyah to completely return back to normal.  She had Todd's Paralysis for the first 24 hours post-seizure; she could only smile one one side of her face.  My main concern at the time of the seizure was that she might have further brain damage.  I was praying, "Please protect her brain, Lord.  Please protect her brain!"  I see no indication that any brain damage occurred.  There is no way to prove one way or the other.  Prevention is best.  We will keep her on a very low dose of Keppra for two years.  If she remains seizure-free for the full two years, then we can try to wean her off the medication.  In the meantime, her temperature must never go above 100.4 degrees because of her risk for febrile seizures.  Also, we have to keep Diazepam with us wherever we go...just in case.  Apparently, kids who have long seizures tend to continue having long ones.   We've been told not to wait 5 minutes before giving her Diazepam, but to administer it immediately when we notice seizure activity.  Status seizures can be life-threatening if prolonged.  I believe that God numbers our days.  I also believe that worry will not add to that number.  So, I am choosing moment by moment not to worry but to trust in the One who loves my daughter even more than I.