For some reason I am having a hard time going back in time and relaying my life with Tiara from 2006 until the present. I guess it is because the way I cope with everything we have been through is to try and forgot and move on. Sometimes this is a problem because I will start to forget important medical information that I should have committed to memory. Reminds me of school. I was great at memorizing every word of every note before a test but then the information would just fly right out of my brain within weeks after the test. Because I know my weaknesses, I have kept a list of every seizure medication she has ever been on and what the side effects were and a small summary of her life from birth until guess when? Yes, 2006 and because I didn’t keep up on the summary I can’t pull all the facts from my brain.
Either way I remember enough to give you a quick summary leading up until 2010 when her medical condition really took a turn for the worse and I have yet to forgot.
After she was released from the hospital in the Fall of 2006, her neurologist decided to try a new seizure medication that induces anorexia. I thought that was such a weird way to describe a side effect and totally inaccurate because the medicine couldn’t induce a certain mental state but either way I decided to try it, if it was going to help her lose weight and control the seizures. I was so excited when the doctor told me about the medicine and I was thinking to myself “why hadn’t her other neurologists recommended it?” Probably because of the potential side effect which I found out about, within a few minutes.
It was possible she could develop Aplastic anemia, which if Tiara were to get it, the doctor said she most likely wouldn’t be able to survive such a serious condition. Oh, but good news, it had only been documented to occur in adults, but nevertheless, I had to sign an extra waiver to give her the medicine, just in case. The doctor assured me it was a formality and she wasn’t worried about the side effect, as she had never personally seen it. Decisions, decisions., and so with a heavy heart, I decided to give her the medicine and prayed it was in her best interest.
Within days of starting the medication Tiara started dropping weight, but then again she no longer ate, so obviously she was going to lose weight quick. She went from constantly eating, to me begging her to eat, so her stomach would be coated enough for her to take her handful of meds. I so remember this time in her life, as she spent most days laying on the couch in the family room. She was too weak to do much of anything as she had no nutrition. I used to just stare at her wondering if I had made the right choice? She literally went from a children’s size 16 clothing to an 8 in five months. She lost 45 pounds.
Eventually her body adjusted to the medicine and we messed with some of her other medicines to find a better balance so she could return to school and have enough energy to make it through the day. Once she was back on her feet, everything seemed to be really good for a while. She was only having 2-3 seizures a day, but not big ones and she was attending school regularly. Suddenly one morning while sleeping, she rolled off her twin bed that is in our room and smacked her face on the floor. It was so sudden, and so unusual we weren’t sure what happened. When she looked up we saw that she had chipped off part of her really long front teeth. That day we decided to take her bed off the bed frame and put the mattresses right on the ground, in case there were any future falls. So tacky, but we thought it was safer. The next day, while napping on my bed, the exact same thing happened but this time it was obvious it was a drop seizure. And so her teeth chipped again. I mean she had the longest front teeth like a walrus and within weeks of starting the drop seizures her teeth were jagged and short, which is how they remain today. Lou and I too, removed our bed from the frame and put the mattresses on the ground, such a lovely look. Always having to compromise style for safety and practicality sucks.
Tiara had never had drop seizures before so that is why I was so confused as to what was going on. Once I figured it out, I immediately called her neurologist and we decided to increase some meds and add another medicine. With most children who have drop seizures it is recommended they wear a helmet at all times. Well, Tiara hated to have anything on her head, plus she doesn’t sweat. So if I found a way to force her to keep on a helmet, which I think would be practically impossible, she would overheat. Because I refused to make her wear a helmet, I had to get her doctor to sign a waiver so she could attend school. This was one of those quality of life decisions, that I felt very strongly about. If she was going to fall and hit her head and suffer a concussion or worse, so be it. I thought she would rather endure that than wear a helmet everyday. Another tough decision which wasn’t popular, but I believed it was in her best interest.
After the change in meds, within a few months she stopped having the drop seizures on a daily basis. They would rear their ugly face once in a blue moon, but for the most part they only showed up a few times a month. That may sound like a lot to the average person but to Tiara that is a walk in the park.
So Tiara was cruising along pretty good until she turned 10 and started puberty. Our sweet, stubborn, bossy, special needs kid turned into a terror overnight. She was suddenly having not 2-3 seizures each day but 10 or more accompanied by violent mood swings. She was known for having bouts of violence towards me occasionally but with the onset of puberty everything I thought was bad before was nothing compared to what started happening.