Friday, November 26, 2010

Sleep Study

     On Wednesday night, B had a sleep study. She still is somewhat sleep disordered and will sleep for a very long time, rarely seeming rested when she wakes up. She has been better about going to sleep, though.
     So we went to Children's Hospital on Wednesday. B had it in her head that it meant staying up all night, like she does for EEGs, even though I kept explaining it was a study of how she sleeps.
     Andrew came with us, which was a big help, because she was NOT happy once all the electrodes and monitors were attached. She became particularly angry about the tubes under her nose to measure her breathing. She got mad at me, Andrew, and the nurse and it took quite awhile to calm her down to sleep. She has absolutely no patience right now, a side effect of the Topamax, and while she hasn't had many seizures all week quite frankly, unless she stops experiencing such mood and anger issues, I don't think I can keep her on these meds.
     Anyways, Andrew left and I stayed. They provide a bed for one parent to stay. Well, not a bed so much as an instrument of torture, designed to make parents sit up all night weeping and swearing they will never try to sleep at the Hospital again. I experienced the same thing after her birth, a memory I had a lot of time to think about as I lay on the carefully disguised rock they call a mattress on Wednesday night. When she was born I spent everyday for a month in the Special Care Nursery, and all they provided were hideously uncomfortable chairs. Oddly high and uncushioned chairs, to mothers trying to breastfeed sick babies and who often had stitches in their vaginal openings. I developed a bad infection and they threatened to open me up again.
     When they finally moved her to a ward they gave me some fold down contraption, old, plastic, and positively hilly in all the wrong areas. It felt like sleeping on misshapen dentist's chair. One night a nurse felt sorry for me and told me I could sleep in a spare bed in B's room, and another nurse the next morning was just livid with me for that. The hospital felt hostile to parents. If I hadn't been so exhausted and emotionally blank at the time, I would have made a complaint. All I could think about was getting her home, though.
     So on Wednesday night I just could not sleep and had to keep getting up to move around. B finally fell asleep, but the nurse had to keep coming in and adjusting all the wires on  B's  head. B grew furious, and really, bad med reaction or not, I totally understood. By four in the morning she had stopped all cooperating and refused to let the nurse touch her anymore. I told the nurse to get everything off her, because I knew that girl would not be sleeping again. And she didn't. She read and watched TV, and at 5:30 a.m. we bundled up and caught a bus. We went downtown and got some food. then we came home.
     And slept.
     And we still need to do a 24hr EEG. Yay!
     I am pretty sure she will not grow up with an incredible interest in medical science. I don't blame her.
     But today we had fun. I kept her home from school to have fun with the snow, and pulled her in a sled to the Cafe for Mountainous Marshmallow hot chocolate. No mean feat, since she weighs a ton. I am convinced she eats rocks when I'm not looking.

Thursday, November 18, 2010

When The Meds Don't Work

     B has had a horrible time of it lately. Her seizures are quite bad lately. On Monday she had three. Is the new med not working? Or just not yet? I don't know. She's having a lot of trouble cognitively. She can't follow the plots of cartoons and she's struggling to put sentences together. Her normally bad memory has taken a nose dive. This has led to high frustration and temper tantrums, which she doesn't normally have, because it's really hard when you don't know what's happening most of the time.
     Today we got squeezed in at the neurologist's. The increase in seizures as well as her emotional and cognitive problems are a cause for concern. For now, we will stay on the schedule for the medication.
     I REALLY hope it starts to work, because her neurologist feels like it's time she was assessed for brain surgery, where they will likely remove part of her brain. I really don't want that. But the meds don't work. But the surgery isn't a guarantee. But the meds might work, for awhile. But maybe they won't for the long term. But the surgery is dangerous. But the seizures are stealing her life.
     Apparently children that have tried two or three drugs for seizures that haven't worked are candidates for surgery. B has been on six.
     You know, it feels really weird to have normal interactions with people when you have just been told such things. A little while ago I went to cash a cheque, and I promised B some pizza. They wouldn't cash it because it's a day earlier then the cheque is dated, even though they have the last two months. It's perfectly reasonable, but I became instantly and profoundly depressed that I couldn't buy her pizza. She doesn't remember I said I would, and we have tons of food at home, but I just felt really sad. And now I'll have to go tomorrow and see if the teller thought I was being rude.

Wednesday, November 10, 2010


     B's anxiety level has been through the roof for the last week, accompanying her surge in seizures. She has taken to begging me not to leave her at school in the morning and complaining bitterly about school when she gets home. Also, she's had a few bouts of temper tantrums at home, which is not like her, and today she felt so bad, the worker had her call me and I went and picked her up early.
     I talked to her worker today about how to help her more, and I continue to urge a dismissal of the curriculum. I am more worried about her mental state and feelings about school than I am about her attending to the work.
     On Tuesday of next week, I am going to go in and observe the classroom, to see If I can help them figure out what to do. I am in all the time, I talk to them every day about her, but I can't figure out exactly what is making her so upset right now. She keeps saying they rush her, but I think that's one of the few things she can actually identify. I think it's a combination of the seizures having a really bad effect on her memory, so she's having an extra hard time figuring out what is going on, and the trouble I often see the teachers and support have in giving up the idea of the curriculum. I can understand the difficulty. It's a huge part of their job.
     I admit that I am having a bit of an inner conflict right now. Part of me wants to say, "Screw it," and keep her home until the meds kick in, or we have to switch to new meds. I mean, I am not a mother that often forces her to do stuff. I am very lenient and accommodating, because I think her stress level is high, she has a lot to deal with, and I want her to have all the down time she needs just to be relaxed and not feel at odds with anything. And part of me just wants her to go to school because I need space and time. She's an intense child to parent. She needs constant interaction and supervision. She's high maintenance. And I also am worried that if I let her completely part with school, it will be even harder to get her back, and she needs the extra socialising and independence from me that school allows. Or should allow. Quite frankly, I am so angry at the cutbacks in support that I am seriously considering taking her to panhandle for education money outside of Campbell's and MacDiarmid's offices.
     She, of course, is not conflicted in the least. That child wants me, and pretty much only me twenty-five hours a day. This has just grown in intensity as her seizures have gotten worse over the years. Mom helps everything make sense. Mom understands how she feels and can explain it to others. And while I am far from perfect, I get frustrated and tired and snippy like any Mom, I guess B is better at focusing on my good qualities.
    I wish there was an easy answer. Hell, I wish there were ANY answers, ever, anywhere, by anyone. I wish we could give her meds for anxiety, which is much easier to treat with meds than depression or other disorders, but I am just not going to give her more meds.

Sunday, November 7, 2010

The Last Month

     Well, wasn't October fun! Let's see, we started with me sick and B having an allergic reaction to her meds. We quickly slid into me having a horrible throat infection and losing my voice for three weeks. Then, just as that seemed to be clearing up, we get lice, and now I have another infection! A horribly painful one. Third one in two months.
    On top of that, her school support dropped to unacceptable levels, and I have been trying to help save her school from closing, along with being the PAC chair.
     You know what I would like?A terrifically boring November. A total snoozefest. :)
     B has been very clingy lately. She is having so many seizures, because one of her meds is dropping faster than the new med is coming up. This is leaving her vulnerable to seizures.
     Because of the drop in support, the increase in seizures worries me. Safety is very important, and for her having support is mainly about safety. However, she needs the one-on-one because without it, social interactions become so difficult for her that she simply withdraws. That is not good for her.
     An Occupational Therapist saw her at school and agreed with my request for speech recognition on her new computer. Frankly, if writing by hand  is too complex for her, I doubt she will ever master touch typing. That requires spatial skills, memorisation, muscle memory and concentration.  All areas of difficulty for her.
 I think speech recognition will help her use the computer more effectively.
    The good news is that her new haircut, which I gave her in a fit of lice fuelled panic, is absolutely adorable. I'll post pictures soon.

Thursday, November 4, 2010

Support For B

    On Tuesday B's teacher informed me that the support for B's classroom has been brought down to 1.5 support workers. That's one full time and one half time. There's eight special needs kids in her class.
    B has always qualified for full time help and only ever received half time, and had to share that. But to have to share a worker with eight kids, that is not even remotely acceptable. That means she will recieve no help for five of her six classes. WHY THE HELL WOULD I EVEN SEND HER TO SCHOOL??
    I have some phoning to do.