Wish For Allie

Tuesday, February 14, 2012

Her first seizure story

December 2004 Children's Mpls, MN - 16 months old. 24 hour EEG

It was December 4th, 2005; Allie had her first absence seizure at 16 months old. She fell back under our Christmas tree and I thought she was staring at the pretty lights. I will never forget those moments. After that, it was pretty much a blur. My husband has never heard me scream like that. Ever.

"Did she have a fever today?" the paramedic said in our foyer as Allie lay sleeping in my lap while I’m sitting on the steps. "No,” I said. "It is a febrile seizure ma'am, they are really common. She will be fine," the young paramedic said to me--I think to shut me up. I actually remember feeling at ease, she will be okay. We then rushed to the St. Cloud ER.

After being admitted to the St. Cloud hospital, the moronic doctors watched her seize every hour for 10 hours throughout the night. My family and a good friend visited us, giving support and advice. We made a decision to make a frantic helicopter ride to Children's Hospital in Minneapolis, Minnesota. Finally, maybe we could get some answers. "No she did not have a fucking fever!" I yelled across the room to an innocent, unsuspecting pediatric neurologist. "STOP MY BABY FROM SEIZING! DO SOMETHING!" I yelled with all my might.

"Has she hit her head?" the neurologist and five nurses ask. "Yes, she fell back and hit her head on our hardwood floor.” I thought nothing of it. OMG! The CT scan had no evidence of a head injury and no TBI diagnosis. "For all I know you made up that she hit her head. There is no evidence of a head injury on the CT," says the pediatric neurologist. "This is just a coincidence that she had seizures the same day she hit her head; she already had a seizure tendency,” says the pediatric neurologist.

And the guessing starts. All doctors guess....

She was put on strong IV doses of Phenobarbital to stop the cluster seizures. She was on the liquid, red-colored yuck Phenobarb for three months. A narcotic in my 16-month-old. That was heavy shit.

Fast forward seven years and seven anti-seizure medications later…

"Does she have grand mal seizures?" Then they look at you with the big, feel-sorry-for-you stare.

If I had a dime for every time a person asked me if my child had grand mal seizures, I would be blogging from my beachside mansion in Hawaii and not in my town home in Minnesota. Grand mal-type seizures are the shaking type that you see dramatized on "House" and "Grey's Anatomy." There are other types of seizures: Absence, Myoclonic, Clonic, Tonic Atonic, just to name a few. Our daughter has experienced two types of seizures in the past years. 

1. Absence seizures cause a short loss of consciousness (just a few seconds) with few or no symptoms. The patient, most often a child, typically interrupts an activity and stares blankly. These seizures begin and end abruptly and may occur several times a day. Patients are usually not aware that they are having a seizure, except that they may be aware of "losing time." -webmd.com

2. Partial Complex causes impairment of awareness. Automatisms such as lip smacking, chewing, fidgeting, walking and other repetitive, involuntary but coordinated movements. - webmd.com

When our daughter has a seizure she needs to sleep for about an hour after each seizure. 

Current Meds for seizures prescribed by Dr. J in Minneapolis, MN are Lamictal 62.5 twice daily, and Depakote 125 mg at wake and 25 mg at bedtime. Lorazapam 1 mg p.r.n. at sign of first seizure up to two doses in a 24 hour period. We have found if we do not administer Lorazapam after the first seizure, we will see them once every hour, this is called a cluster of seizures.  In her case the 30 second seizure will come every hour on the hour over a 24 hour period. We have found Lorazapam to help her break these clusters or cycles. 

Over the past 8 years, she has had 5 EEG's. Three of these were 24 hour EEG, which is the electrodes glued on for a 24 hour period in or out of the clinic. She sleeps with them on the best she can. We document everything with the times. The more the doc knows the better he or she can understand what causes spikes or not. Of the 5 EEG's we must have had bad timing because they could never record a seizure while the electrodes are attached. The glue is messy to dig out of her hair but it is water soluble and with alot of patience it does eventually come out. Do not shampoo during the digging out glue process, this hides the glue too much and you will have a hard time finding the chunks. 

No comments:

Post a Comment