November is National Epilepsy Awareness Month

This is not going to be eloquent or funny. There may be grammatical errors... I really don't care... it is all I can do just to get this out. These are the facts.
Here Goes...

On the morning of July 30th 2006 Kid woke up complaining of a stomach ache. I was pregnant and tired and I had her scoot into my bed. She was having a hard time sleeping and was kind of in and out of it for the next two hours. At 8 am she sat up and let out the scream she always does right before she vomits. I scooped her up and took her to the bathroom and held her over the toilet. She threw up some stomach bile and then dry heaved for a long while. She wasn't crying which I thought was slightly unusual since dry heaving can be pretty painful. After some time had passed about 15 minutes it seemed like she was through, or at least clear that nothing else was coming up, so I put her on the toilet and she went potty. She was still not really helping me do anything and I can remember being a little annoyed that she wasn't supporting her own body weight. We kept asking her if her tummy hurt, and if she was done, and things like that and she didn't answer us. I actually remember snapping at Mr F that she didn't feel well and obviously didn't want to talk right now. After 30 minutes I told Mr F to call our friends and let them know that we would not be attending their daughter's birthday party.

I carried Kid to my bed and laid her down. I looked at her and knew something was not right. I asked her a question and I could see in her eyes that she was not there. She then started foaming from the mouth and went completely limp. I screamed for Mr F to call 911 and picked her up running downstairs... sure that I was holding my dead daughter... that she had just died in my arms.

When I got downstairs I set her in Mr F's lap and could see that she was shallowly breathing. Her eyes were open but completely vacant. We are fortunate in where we live, we live about 2 miles from a top hospital and right downtown. A fire truck and an ambulance were at our house in under a minute. The EMTs immediately suspected that Kid was having a seizure and in need of Oxygen. They loaded her into the ambulance and I was allowed to ride in the back with her. After what seemed like a really long time we were finally on our way. Kid was still out of it and I absolutely feared that she might die on our way. Thankfully she was receiving oxygen but I was very worried that they might have to intubate her or something before we got there.

At the hospital the doctors determined she was still seizing, by now it had been going on an hour, they took all her history and kept her on oxygen. At some point they got really unnerved that her oxygen levels were too low, at 86%, then I realized it had been in the 60s the whole time with the EMT and started to worry about her brain function. They gave Kid some medicine to stop the seizure. It didn't work. A while later, now the seizure had been going on for an hour and half, they gave her another dose. She was pretty doped up and soon she fell asleep. They sent her to have a CT scan. That came back normal. They gave her a spinal tap. That woke her up. They couldn't find any reason for her seizure. After her waking she was not normal. She had been given a lot of drugs but still it was disturbing, it was as if she had become retarded... and we were qutie worried that she had. Kid was previously a very bright, verbal child.... now she didn't make sense and would look right at me and ask "where is mommy".

She was admitted for observation. Once in our shared room she started becoming quite agitated, screaming, ripping at her IVs, thrashing (very unusual behavior for mild mannered Kid). I thought she surely was damaged. Only one parent could stay the night, so I sat on the window seat and listened to her heart rate monitor beep all night. I climbed in the bed to feel for her breath. Early in the morning the neurologist came and told me she'd need an EEG and then we would go home. I was assured that many, in fact most, children who have had a seizure only ever have that one seizure and that we may never know what caused it. That due to the length and severity of her seizure we would need to keep an emergency medication with us at all times. Many hours later we had the EEG and that came back normal as well. Many more hours later and we finally had the meeting with the pharmacist who taught us how to administer the rectal gel that is the emergency medication. If Kid was to have another seizure we were to time it and at 5 minutes call 911 and administer the medication. Any seizure under 5 minutes is okay, anything over 5 minutes could be life threatening. The gave me a folder of information and told me to buy this book.They scheduled us a follow-up appointment with the Neurologist for the end of November and discharged us.

Obviously this changed our life. I was terrified every moment of the day and night. I couldn't sleep(at all) for over a month. And in September I let her go to preschool and had to trust them to identify her non-convulsive type seizure and administer the medication. This was not easy. I sat in my car in the parking lot for many days. I cried any time I saw an ambulance. Having the medication on hand every where you go is something that takes thought and effort... and awareness... an awareness that seeps into every part of your day. I have a medicine in my bag "in case" she seizes.. to keep her from dying. That is not easy to live with. We were to told to go about our lives normally.... oh but to cancel that family vacation in Wyoming.. oh and no car trips you always need to be within a short distance of a hospital. The good news is that the longer a child goes without having a seizure the less likely they are to have a repeat seizure and to be Epileptic. If you can make it to 6 months seizure free you have a 90% chance of never having another one. At the three month mark we went to Disney World. We were very nervous about the flight, but hey they do have oxygen on board!, but knew that once we were in Disney World we could enjoy ourselves and feel comfortable that if anything were to happen we could get quick medical attention. We were starting to let ourselves feel that maybe her seizure was in fact a one time event.

Less than two weeks later on Monday, November 13th 2006, just after Mr F had gone to work Kid woke up complaining that her "tummy hurt". She started vomiting bile and "mouthing" (as I know recognized this to be an element of her seizure and not dry heaving). I took her to the bathroom and laid her down on her side. I got the clock and the phone and the medication. I waited for the five long minutes frantic nearly out of my mind screaming at Mr F over the phone. I went to administer the medication but she swatted my hand away... was that a sign that she was no longer seizing??!? The emergency medication has serious side effects and can lower her breathing rate and so giving it is dangerous too. I called 911 and asked what to do. They said the EMTs would know and to wait.

Again the fire trucks and ambulance were there within seconds. But this time the EMTs did not recognize this as a seizure and were not administering the medication. By this time I was certain that she was still seizing since her mouthing had returned. The EMTs were not moving quickly and not getting her oxygen... I wanted to jump out of my skin. They told me to get dressed. I did and when I returned I saw that Kid had both urinated and defecated in her pjs. This... people... is a definite sign that she was in fact seizing!!! I didn't know what to do... I asked if I should clean her up. The woman said yes. I couldn't believe nothing was happening yet. I cleaned her and we got her in the ambulance. This time I was not allowed to ride in back. The whole time the EMTs were talking to Kid, but they just didn't get it.. they thought she was postictal (the phase after a seizure when it is common for the patient to be "out of it") but she was still seizing. I was riding in the front helpless... hating myself for not just giving her the medication. Knowing that we were now going on 40 minutes of seizing and that Kid could suffer real serious consequences.

Mr F met us at the ER. This time Kid's seizure stopped on its own after about 45 minutes. They kept us in the ER and watched her for a few hours and diagnosed her as being Epileptic and started her on anti-seizure meds. They told us to see our neurologist a week later. A week?!? Yes one week.

Our neurologist was matter of fact about the whole thing. He went over the importance of the emergency medication and made it clear that if I don't know whether to give it or not that I should give it. He reminded us not to travel too far from medical attention and informed us that Kid would need to be on the anti-seizure medication for 2 full years. If she remains seizure free while on the medication for two years than they would wean her off of it. Most children outgrow Epilepsy in two years. He also scheduled a detailed MRI for Kid.

The MRI was hideous and terrifying. Children are put under for MRIs. Kid's MRI was the most detailed MRI, it took the tiniest slices of brain. It was 1.5 hours long. When she came out she was extremely agitated, since she was intubated (we were not allowed to be with her in this phase of recovery) so they drugged her. The gas they gave her to put her under made her very sick and she vomited all over herself. The drugs they gave her to calm her made her "out of it"... which is a lot like what she is like when she is seizing so I was pretty much having a complete panic attack until they finally wore off. The doctor told us we would get the results in the mail in a few weeks.

Two days later we got the phone call. I knew that was not good. They found a tiny imperfection in her hippocampus in the area that causes focal seizures. It is so small that it could be coincidental he told me. And yet he is calling me... I told myself. If Kid's seizures are caused by this abnormality she will not outgrow her Epilepsy, if this abnormality is merely a coincidence she still might. They don't know, we don't know, no one knows which. Epilepsy is not one thing, it is a broad term that covers many types of seizure disorders. Kid's form of Epilepsy is very unusual. Most seizures last less then 30 seconds. Kid's seizures were an hour and half and 45 minutes respectively. Kid's seizures are non-convulsive and so difficult to identify (even by trained EMTs). Kid seizures are called Status Epilepticus and are life threatening.

We wait and we watch and we listen and we worry. Every day. We lament the fact that Kid's personality is effected by her anti-seizure medication. That our once easy going, happy child is prone to tantrums and suffers from a very low frustration tolerance. I mourn that Kid and I , who once took weeks long road trips and had adventures, are for the most part grounded in Ann Arbor. I grieve and I grieve and I grieve... because honestly part of me died when I held her in my arms early in the morning Sunday July 30th and believed I had just lost my baby... forever... and that part of me is never coming back.

Today is November 14th 2008, Kid has been seizure free for one year. We continue to wait and hope that next year, today, we will be able to start weaning her from her medication. And that she will in fact have outgrown her Epilepsy and that she will continue to grow and thrive and amaze and impress and love and flourish as she so deserves to be able to do.