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Saturday, February 25, 2012

Changes & Blessings

Last Friday I received a call from Teale's school. The nurses voice said "Everything is fine, Teale had a brief seizure." My heart dropped, "What happened?" She went on to describe the seizure; brief, staring, eye movements and a total loss of continence. "She came out of it on her own and has been changed, she seems ok." "Do you want me to come for her?" I asked, half in shock. Teale had never had a seizure at her new school. Basically Teale doesn't have day seizures, period. Her seizures are nocturnal and extremely long, an hour is common.  So this was "different" and in the seizure world, different is scary. Changing seizures can be very alarming, it can mean many things. I know a couple families who lost love ones because the seizure disorder changed suddenly and the medical community could not help get the seizure under control. One of our friends in our church lost his daughter when she was just thirteen years old. This was before we were friends, but he has told me the story. Puberty can wreak havoc on on a child's body, changing seizures for the better or for the worst, as all those hormones course through the body. Fear rushed through me as I couldn't help but think of my friend's daughter and the extreme pain they must have experienced losing her. He often looks at me in church with the most compassion and a hug from him is not just a hug, it is a bond, he understands. Many people in times of crisis are very kind to us, but those who live or have lived this kind of a life, there is a connection like no other. Back to the story. I was glad when the nurse said that they were comfortable keeping Teale. I knew my afternoon was full and now I would be on the phone much to Teale's doctors discussing this latest change. My first call was to Mark, who didn't answer, so I left a message, trying to not sound alarmed, but knowing my heart was heavy. When Mark called me back, I broke the bad news. The February break would be starting the next day, which made things both good and bad. I would be able to keep an eye on Teale, but a big seizure may be coming. The nocturnal seizures cause Teale many issues. We have had weeks after one of her big seizures that she is "very off." She is exhausted from the experience for days and often also very violent. There is more understanding since even nine years ago when this all started in our life with Teale. Doctors now understand that the electronic brain waves get "scrambled" in a huge seizure and can take time to get back to normal. During the week that follows a seizure, Teale is often very tough. So all this goes through my head as I think about the school break coming and wonder what is around the corner for us. Mark and I share a saying, "She keeps life interesting." As I hang up with Mark, he says that to me. I contemplate this, interesting life, that is for sure. The next calls are to doctors. We have a phenomenal relationship with our pediatrician, so I text him. The next few hours I will spend working between the neurology office and the pediatrician office, trying to come up with a plan to make it through the night. We decide to increase Teale's seizure medicine very slightly, as her blood draw level a  week  earlier had been a bit low. I feel a tad of relief that this may be a reason she had the day seizure. The thing is, as is everything with Teale's seizure disorder, we will probably never really know why this happened to her. Her increased weight from the anti psychotic could be a cause for many reasons. Her weight has caused her sleep apnea to be worse, sleep deprivation causes seizures. Her increased weight naturally decreases her medication level, so does she need more as her weight increases? The teen age hormones changing her body could also be the cause. The doctor we had for many years in neurology had retired last spring, so we were working with a new doctor. I had loved our old neurologist, an older man straight from Italy. Years earlier we had taken Teale to John Hopkins Hospital. Her seizure disorder was very concerning and we were actually considering the operation that would remove the part of her brain that was seizing. Mark's cousin is a very promenade doctor who works at John Hopkins. He had helped us get Teale evaluated there. While we were there, the doctors had recommended the doctor in Rochester that we had for the last 9 or so years. He was compassionate and he understood that his "part" in Teale's medical care, was just that, part of the whole picture. He treated Mark and I with respect and as a vital part of her caring team. I was not getting the same vibes from the new neurologist Teale was put in the care of. The attitude was more of a "my specialty" is the most important and the only issue we should be concentrating on. Working with a doctor who didn't get the intricacies of my daughter would not work for me. Teale's seizure disorder is a part of Teale, not the whole of Teale. We live with her and her mood disorders are the most challenging part of her, something the new neurologist has yet to understand. The hard work of building a new relationship with a new neurologist added to my stress. "She sure keeps life interesting." ~to be continued....

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