Princess’s turn

I do mean to write regularly, honestly I feel better when I’ve sat down and unloaded some of this through the tiny little keyboard on my iPhone, but recently I’ve been so overwhelmed I haven’t really known where to start.

If you’ve read previous posts you would know I have one beautifully neurotypical child, one easy, smart, outgoing, social little girl who has never had any health problems bigger than an ear infection, never had an adverse reaction to vaccines, and has never shown any if the signs of autism or sensory problems at all. I love all of my children with every fiber of my being but I’m not going to lie I’ve always been very thankful for my one “normal” child, the one that can go to ballet and walk down the street with me without needing to be on a leash or strapped on my back to stop from running into traffic, doesn’t need special clothing or a IEP at school, doesn’t have doctors and therapy appointments constantly. I took for granted her health and now it’s coming around to bite us and I’m far more overwhelmed with fear and anger than I’ve ever been when it’s come to Monkey or Buttons and their issues. I feel guilty that I feel like this, I feel angry that I wasn’t allowed just one little price if normalcy in my life, I’ scared for what lies ahead for my baby girl and I don’t know how I’m going to find the energy and strength to start a new unknown journey while still traveling the road we are on.

Princess has always been sort of flighty, she buzzes around from flower to flower spinning circles and dancing in the rain. She gaps out and loses her train of thought a lot and I’ve never thought too much about it until a little over 4 months ago. We were standing in the kitchen and she was negotiating for some treat in the cupboard, I was looking right at her, we had direct eye contact and right in the middle if her sentence she stopped dead, her eyes fixed and she just stopped. I called her name twice with no response then she just started talking again, right where she left off as if she hasn’t just taken a 3 second break. I asked her if she was ok and she looked at me like I was crazy, of course she was ok. All the alarm bells went off in my head, I scoured my memory banks recalling images of a little girl I used to have in child care and rec programs I ran at the community center, the little girl who was always going for EEG and sleep studies, the one who lived with her very stressed and overwhelmed grandmother who was always watching her and working with her neurologists to try and find the right combination of expensive medications to control the seizures she had every day, every hour, where she would gap out and lose seconds of her day to nothingness, blankness a stare and a twitch from a bombardment of electricity that ripped trough her brain uncontrolled. All of these thoughts rushed into my head along with panic and fear all in the 3 seconds that princess stared blankly into my eyes.

I started keeping a closer eye on her, I saw her blank out a few more times, standing at the kitchen table she stopped again in the middle of a sentence this time she wasn’t still, her body went stiff and her torso jerked hard four times, by the time she snapped out of it I was beside her talking to her, asking her again if she was ok, again she thought I was crazy but now I knew for sure there was a problem, I made an appointment to see our family doctor.

I hate going to the doctor, I spent so many years fighting to get monkey in for assessment that I honestly feel like every doctor I talk to thinks I’m making shit up. I mean really what are the odds right? On with autism and an alphabet soup of other diagnoses, one wanting to receive her own alphabet soup of labels and services and now one with seizures. The doctor put in a refer all to the pediatrician Monkey and Buttons see and we went home to watch and wait. We have been watching and waiting for 4 months. Finally last week Princess got her appointment.

During the office visit the doctor did a full work up, got Princess to walk on her toes, her heels, touch her nose, answer questions, she had 3 seizures during the examination. I can say seizures now because the doctor confirmed that they are definitely seizures. She wasn’t sure if they are absence or complex partial seizures though and apparently the treatment is different depending in the type so we are headed to Kelowna. In two days for a sleep deprived EEG. I’ve been keepin track of the seizures I see and so far I’ve seen between 10 and 20 each day, some short, some longer, some with twitches and some with loss of bladder control. Public health is visiting the daycare this week to do seizure training and I’m meeting with NONA to fill out some paperwork for support child development, since Buttons was already in their wait list and now Princess is too, they are fairly confident they will be able to fund a one on one in the daycare since it will actually be a two on one and will kill two birds with one stone, yay cost effectiveness.

I’m starting to research the anticonvulsant meds available and some of the side effects are scary as hell. I don’t know how we will pay for them and I’m scared for what lies ahead for my baby girl. I’ll post again when we know more.

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