At 6:08 a.m., November 20, 2006, I awoke to find Angelica, my precious 10 year old daughter, suffering a Grand Mal seizure. Yes, I'm sure it was a seizure. Her hands were in fists and her little arms were bent at the elbows and her entire body was stiff as a board and in what looked like one huge muscle spasm. A quick call to my mom who yelled at me to call 911 and hung up, and then to 911 and the firefighters and paramedics were at my apartment by 6:15 a.m, if even that long. When you're in a panic, you tend to lose all track of time and logical thinking. Though I did remember to call into work! LOL
I ran downstairs in my jammies, jeans, no shoes, no jacket, and flagged them down. I ran back upstairs with one of the paramedics hot on my heels to find her unconscious but breathing. Her eyes would open but were not responding to light or any other stimulation. The one paramedic stated her eyes were a little more dilated than they should be in the light.
Needless to say, I was scared out of my mind. They had me hook her up to an oxygen saturation monitor, not sure what it's really called but it's the device they put on the tip of your finger that lights up like E.T. to tell them how much oxygen is in your blood. I applied the leads for the EKG monitor, and recall the paramedic who ran upstairs after me saying, "Mommy's gonna be a paramedic for a day." Yes, I actually laughed. You do strange things when you're panicked but know the help you need is there.
The seizure only lasted a minute or 2 but I swear it was longer. She was in what they call a post pictal state (not sure if i spelled that right) for at least 30-45 minutes after the seizure. She was able to sit up long enough for one of the paramedics and I to get her into the chair thing to get her downstairs and onto the stretcher. She didn't really start coming to until we were halfway to the hospital and she was in the back of the ambulance.
I know when my mom got to my apartment she freaked. She told me this morning when she walked into the room and saw her, she was ashen and looked dead. All I knew was something was wrong and the help she needed was there. I rode in the ambulance with her but wasn't allowed to sit in the back with her. I had to be up front with the driver as I had to be in a seat belt. I just wanted to be with her you know? She was crying hysterically and the the female paramedic driving asked Tito, the guy in back with Angelica if they had a barf bag for her. She then explained to me that after a seizure, most patients throw up. Good to know....
We finally got her to the ER, I swear that 20 minute ride took 3 hours. Very shortly after they transferred her from the ambulance stretcher to the ER stretcher, she started crying again and saying her legs hurt. I looked down and they were stiff as a board and shaking uncontrollably. Yes, she was having a second seizure and it had been less than an hour since the first one started. I ran out of the room to allow the paramedics, doctors and nurses the room they needed to take care of her. They managed to get an IV into her arm and gave her a dose of Adavan which stopped the seizure and made her extremely sleepy. Mom said the whole time she was trying to say, "Make it stop, make it stop." She wasn't in the post pictal state as long this time, but couldn't remember a thing that had happened Thursday. That scared me even more.
After an approximate 3-4 hour nap from the Adavan, minus the 2 times she woke up to throw up, she awoke, a little more alert, and did indeed remember everything that happened Thursday. Big sigh of relief.
They did some blood tests, a urinalysis and a CT scan on her, all which came back normal. They were to order an MRI and a thyroid test and transferred her to Arnold Palmer once there was a bed available and the transport team was there.
Yet another ambulance ride, woo hoo. The Arnold Palmer Pediatric Critical Transport team came and gathered us up and brought us to Arnold Palmer where we stayed until about 2 o'clock Sunday afternoon.
She was given an EEG, which is where they hook all these little wires to your head and wrap your head up like a mummy. She was hooked to this machine for 24 long hours and they videotaped her as well. It was pretty cool to watch her brain waves work.
Well the pediatric neurologist finally read the report or EEG or whatever. Walked into the room, said hi I'm doctor so and so, can't tell you her name cuz I don't remember it and all the paper work is at home. I saw nothing abnormal on the EEG so you need to get her counseling. What?????? I so badly wanted to go off on her but for the sake of my child, I didn't. Instead, I called my aunt in North Carolina who's a medical lawyer and Nurse Practioner and asked her to speak with the doctor.
My aunt then explained to me that it's just a matter of interpretation and that I needed to demand a second opinion. Which of course I did but didn't get the referral. That will be handled today. My cousin has epilepsy so of course, we were thinking that's what it was but don't recall how she was diagnosed. Our family tends to operate outside the 'norm'.
December 20, 2006 -
Angelica woke me up at 12:30 a.m. to tell me her legs hurt really, really bad, like they were going through something. (Same complaint she had last month) At 12:58 a.m., I awoke to her having a seizure. Surprisingly I didn't panic this time. I called 911 and let them know what was going on and the paramedics were on the way. Only difference between this time and last is her body was flailing about and her lips turned blue.
Paramedics were on site within 5 minutes, if that, and we were at the ER by 1:30. Everything is hunky dory, just waiting on the doctor to come in and check her out. I think I had slept for maybe an hour at this point and was too afraid to go to sleep. She was sleeping, and that was good. Your body goes through a hell of a lot when it has a seizure.
The ER doctor came in around 4 a.m., and I swear no sooner did he walk in than she woke up, said my legs hurt and went into the WORST Grand Mal I've ever seen. Her body was flailing about, her eyes were opening and closing, her jaw was opening and closing and she just shook. Her lips actually turned purple this time. I know it couldn't have been more than a minute, MAYBE 2, but I swear it took a year.
All we could do was sit and watch, and wait for it to be over. Once it was, I cried, of course. They drew some blood and gave her some Adavan and she slept for a good 3-4 hours more. She finally woke up in time for an MRI, which came back normal. They called her pediatrician and the neurologist we had seen at the hospital last month. They prescribed her Trileptal and said she has to take it twice a day. That's an anti-convulsive medicine. Not real strong, but it gets the job done.
We followed up with the neurologist and she's gonna be on this medication for at least 2 years. Provided she stays seizure free. Then came all the restrictions. My poor 10 year old feels like her life is over LOL
No roller coasters, 9-10 hours of sleep a night (which she gets anyway), No computer or T.V. for more than 30 minutes at a time and absolutely none after 7 p.m., in bed by 8:30-9 (which she is anyway), no caffeine (no chocolate in other words OMG), no diving, no contact sports and 45 minutes of hard exercise every day.
If she manages to stay seizure free for 2 years, they'll begin to wean her off the medication. She has to see them about every 4 months, and on December 27th (my lil sis' b-day!), she has to have a sleep deprived EEG done. She has to be in bed at midnight and awake at 5, no naps.
The medicine makes her sleepy and all the new life changes/restrictions are really bumming her out. She can have white chocolate and decaf iced tea though!!!
The EEG came back normal, as every test has. Ugh!
January 21, 2007
Well, it's that time of the month when she normally has her seizures. Again, we have no clue why and still have no answers.
She came home from her dad and step mom's on Sunday, the 14th complaining that her legs hurt, etc. She had the same complaint until about Wednesday. I was really worried that she was going to have a seizure as this is the time she normally would.
THANK GOD for her meds as she has remained seizure free for one month!!!!!!!!!
September 25, 2007 - Still no seizures!!!!!!!! The neurologist said after 2 years with no seizures we can look at taking her off the meds. Thank you all who have and continue to pray for us. It means a lot.
