Monday, October 25, 2010

Losing My Voice

     I have had absolutely no voice for the better part of a week now, and barely a voice for the week previous. I have chronic laryngitis, something I have had many times in the past. My mother, brother, and I all have susceptible throats.
     It has been very hard to parent B through this. She does not pick up on non verbal cues, can't remember from one minute to the next that I can't talk, and has been very argumentative for the last couple of days due, no doubt, to the absence of my usual constant verbal assurances of love and support.
     Her memory has been worse than usual lately, from the medication change.  We watched some Invader Zim episodes the other day, and she LOVES Zim, and she kept asking me throughout the program what was going on. That's bad.
     The memory problems lead to frustration, which in turn lead to anger, guilt, and anxiety, which impacts her behaviour even worse. So it's been a weekend of me getting frustrated because I have to repeat things constantly, even though I can't talk, and her feeling anxious because I am shorter than usual out of necessity. Not a winning combination for home time.

     B is actually a lot like Gir. I love Gir.

Tuesday, October 19, 2010

The Last Three Weeks

     I took B into have breakfast at the school Friday morning (I'm too sick to go shopping) and she had a seizure while eating her cereal, so I brought her home.
     She has now missed most of the last three weeks of school. This is why I can't have a job, even though I want one, until we find meds that work. It's really depressing. Sometimes it feels like her disabilities are the whole framework of our lives. I can't move anywhere far from the hospital and doctors. I can't even take her camping more than a half hour away from a hospital. My sister went to the states this weekend, something that I can't do with B unless she's insured, really, really insured, and what company would touch us with a ten-foot pole? Every week I have to discuss and fill out forms and book and make appointments. I have to track the meds, her reactions to the meds, and make sure I'm within a few minutes of the school everyday.
     And then I talk about her, and I feel like, "Is this the only thing going in my life? In her life?" And it's not, but it does overshadow and colour everything we do. I don't want her life to be shaped and ordered by disability, and yet now it's all I see. I am terribly worried about where to send her for high school. I've been after the school based team for two years now, to present me with options, and NOTHING. Not one choice have they presented, which really worries me. Each one will have to be seen, interviewed, and will have an application process. I need time to do that.

Friday, October 8, 2010

Hell Week

     Well, this has certainly not been an enjoyable week. B developed a high fever last week, which I assumed indicated she had a cold, since both Andrew and I had bad colds the week before. Then, last Saturday I woke to her having a long (2 minutes) Complex Partial in bed next to me. That would be the reason why I sleep with her. Vomiting and heavy drooling present a choking hazard.
     On Sunday her face turned brilliant red and swell up and she still had a high fever, but didn't seem to have other cold symptoms.  Sunday night, around 2 a.m., I became concerned that she actually showed a reaction to her meds, the new ones we had just started her on, Tegretol. I feared she might have Stevens-Johnson Syndrome, a horrible necrotizing skin disorder that people can develop from plenty of different medications, but has more links to specific types, like anti-convulsants. I have been told every time she starts or comes off a med to watch for it.
     I phoned the nurse's line, but the nurse, who I found to be very kind, couldn't really offer direction. We both decided to wait until the morning to see how B felt.
     In the morning she had a rash all over her torso, arms, and up her neck onto her chin. I had a mini panic and got her into the GP in an hour. He agreed that she had an allergic reaction, although he couldn't say for sure either way if she might have Stevens-Johnson. I felt better though, having seen him. The visit was followed by some phone calls to the neurologist, who asked that I bring her in right away, but since that proved impossible, we agreed to have an appt. on Thursday morning. We had actually originally had an appt. Thursday morning, but since she had seen him just two weeks previously, that appt. had been cancelled. Obviously, all this had been a plot by her to keep her commitments. :)
     On Thursday she actually had three appointments, 9 a.m. at Children's Hospital, her GP at Hastings and Slocan at 10:30, and an appointment to meet her new counsellor at Child and Youth Mental Health at 2. What a hard and tiring day.
     The neurologist has now prescribed Topamax, which belongs in a different drug family, so hopefully she won't have an allergy to it. She's on the mend, but has already had two seizures today, so I've given her an Ativan, which she has been prescribed for Anxiety, but they use it for treating seizures, too. I don't want her going into Status Epilepticus today, as I feel quite done with doctors this week, thank you. They are nice people, but, yeah, we've quite had enough. 
     But let this demonstrate that I KNEW something more had happened BEFORE she developed the rash. Parents KNOW their children, so do not EVER hesitate to be pushy and demanding in getting them help, and ALWAYS follow your instincts. No doctor is ever going to get angry at having examined a healthy child, not if they are a good doctor. If they do, then they are not a good doctor, get a new one. B's doctors are great.
     One thing that worries me about the Topamax is that it induces anorexia (not anorexia nervosa), which she has already had from the Lamotrigine and which she had just recently recovered from somewhat. Oh well, high calorie, fat, and protein kid friendly snack and meal ideas are appreciated.
     I am quite tried and pretty grumpy today. I think Andrew has hidden himself away to avoid my grumps.

Sunday, October 3, 2010

I Am A Part Of B's Brain

     That's a weird title, but it has become more and more apparent to me lately that a big reason B doesn't like to spend time apart from me results from the fact that I have taken over certain functions that she lacks. I operate as a memory holder, a social guide, and an initiator of action for her. The world and casual social interactions remain a mystery to her, and until she grows comfortable with someone, she doesn't know what they expect from her. Those that do get to know her, I notice, also take on a part of this role, prompting her and forgiving her inability to master conversational skills. I wonder how much they notice that they do this as well?
     In new situations she has trouble following even basic social cues. People will say hi to her and she will walk right past them. She has a friendly demeanour, so doing this seems odd. When people ask her what she did, or how she feels, she turns to me to tell what we did or how she feels. She doesn't do this because she can't expend the energy, nor does she do it as a cheat. She doesn't remember or doesn't know the appropriate response.
    One thing that she has done to compensate is to manufacture memories that she doesn't possess. For instance, everything she remembers happened when she was four. I use 'remembers' loosely, lots of her memories are not real, but she understands that people have memories and so she has felt compelled to develop a scheme wherein she has memories. As a result, she says, "Mommy, remember that time we went on a boat when I was four?" and I say, "Yes, four was a very busy year for you." because she gets quite married to these "memories".
     I also have to physically steer her around quite a bit. Because she lacks the areas of the brain that process spatial information, giving her directions to find something or get something doesn't work.
     I have realised that doing without me is much more serious for her than other children, and that it has become a real source of anxiety for her for good reason. She doesn't want my continuous presence, she just needs her whole brain.