Monday, December 27, 2010

Ah, Xmas Day At The Hospital

     B does not respond well, I keep relearning, to stressful situations, crowds,  lots of visiting, and the over-all overwhelming expectations of the Holidays. On Christmas Eve she had a very hard time at the dinner we had, feeling very stressed out but happy to see her cousins. After everyone had left and it was just me, her, and Andrew, she had a pretty big meltdown. She yelled at me and tried to throw the cat's scratching post. She couldn't say what was wrong, which is something we've been working on, but expressing herself comes very hard to her.
     I have long suspected that she has a lot of seizure activity at night, but not in a very obvious way. Her sleep is very restless, and she has repetitive mouth movements and moaning. She's scheduled for a 24 hr EEG, but as with everything in our underfunded health care system, this means a long wait. Some research on my part has turned up Electrical Status Epilepticus During Slow Wave Sleep, a condition that will only be made clear with the 24 hr EEG. I will discuss it with Dr. P on our next visit, although there likely won't be anything extra we can do that we aren't already trying. I would like a night time seizure monitor for her, though, because I don't ever really sleep well as I'm always worried about night time seizures. During sleep is the only time she has Tonic Clonic seizures, and even though she hasn't had one of those in years, still they worry me.
     However, Christmas Eve I climbed into bed at 3 a.m. and as I lay there, she had a Partial Complex seizure. She didn't jerk, she curled her knees up to her chest and went rigid. After a minute or so it stopped, but I remained on edge. At 6:30 she woke me  to say she had wet the bed, which she doesn't usually do. I suspect she had another seizure.
     Christmas morning she slept and slept. I woke her up finally at 12:30 p.m., and she was so grumpy. I finally got her up to open presents, which she did, and then an hour later had another seizure and collapsed on the couch. We let her sleep. A while later she awoke for a bit, but after unsuccessfully trying to get her to eat, I found her collapsed on the couch again. Again she lay down to sleep, and then had another seizure in her sleep, at which point I gave her an Ativan. When she woke up around seven she had a paste around her mouth, which I feared was the melted Ativan. Now I had no idea how much she had ingested, which was worrisome if she did have more seizures. I also didn't have anymore Ativan, so I told Andrew I would take her to the hospital if she had anymore seizures. But this time she was alert, and got up like nothing had happened and coloured for awhile.  Then she had another seizure, so off to the hospital we went.
     There's not much they can do at the hospital, a fact that I have learned well enough. They check her out, watch her for awhile, give her more Ativan if she needs it. For this reason, I avoid going there. It is a lot of stressful waiting for us. The benefit comes in ruling out any other issues that I am unaware of and, in this case, getting some more Ativan. I also needed some clarification on how much she can have, as she has these kinds of attacks, called Status Epilepticus, rarely, and it's never been the case that she's had more seizures after having the Ativan.
     She had another seizure in the hospital, which was kind of relieving. I know that sounds weird, but often B's seizures are like a ghost that for a very long time only her and I really saw. Exposure to her seizures is really dependent on how much time you spend with her. Some people have known her for years and have never seen them. I know the hospital and her doctors know they exist, but having them see her have one makes it concrete and I feel less like a nutcase. It has been that way with people who feel that I am just over-protective, and then they see them and I have to resist shouting, "See, see! The seizures are ALIVE!" Often, everything just feels surreal and, at the same time, hyper-real.
     The neurologist on call told me to slightly increase the medicine (Topamax) she's on and decrease it more slowly. I had been decreasing it at the same rate I increased it. She also told me that B can have 2 or three doses on the Ativan throughout a 24 hr period, as she's big enough for that now. And I can call the on-call neurologist from now on for direction regarding giving her Ativan and whether or not to bring her into the hospital, which is a huge relief. Finally, she told me something very interesting about the next med B's neurologist wanted to try. I thought we had been waiting to start it until all the new medicine, Keppra, until B had all the Topamax out of her system, but it turns out that they have to apply for special permission for Keppra, and that it's very expensive. If they get the special permission though, it's covered.
     We finally left at four a.m.. We went through a drive through for burgers, because she was finally hungry. When we got home, she ate half her burger, had a seizure, and dropped her burger in her boot. :-( How totally unfair was that?
     On another note, awhile ago I read a report from B's public health nurse that said B has Lennox-Gastaut syndrome, which I also need to discuss with Dr.P.

Wednesday, December 15, 2010

Pediatrician Appt.

     On Monday we saw B's pediatrician. I think I have mentioned before that she has the best Pediatrician. Dr. P has been with her since birth, and he is a caring and conscientious man. Not that all her other doctors aren't great, they are, but Dr. P is just the doctor that always makes me feel better about what is going on.
     He agrees with Dr. F and me that these meds are not working for her, but he also worries that she needs to see a tertiary psychiatrist at Children's because she might be having depression symptoms. She's already diagnosed with depression, but I have not wanted to medicate her because she's already on so many meds.
     "You may not have a choice," he said. And he is right.  I have to stay open to all the choices. DR. P has never pushed me into any treatments. When I hesitated at getting vaccinations for her at birth, he was very calm and non confrontational, unlike some others who were irate. I did get her vaccinated, after I had processed all the facts.
     We also talked about the surgery. He said the wait won't likely be long to get assessed, because the surgeon who does it knows that once a neurologist has actually referred a patient to him, well, that neurologist has already emptied his bag of tricks.
     Dr. P said that if the seizures aren't localised, meaning a removal of that part of her brain, then they might separate the two sides, since we know she has a pathology (injury due to stroke) on the right side.
     I really want to get her a puppy right now. I really think it would pick her spirits up, give her a real need to get out of the house, and help her interact with others. Unfortunately, the pet rescues I have been in contact have been run by, uh, really eccentric and uncooperative people.

Thursday, December 9, 2010

The Trend

     Well, I've noticed a real downward trend in my posts in the last two months. They've been really hard months, but I dislike that I'm coming accross as some depressive and depressing person. I'm really not.
     For instance, today I had lunch with Andrew and we discovered that a whole bunch of ridiculous and made-up lyrics fit into the melody of Lennon's "Give Peace A Chance", which was quite enjoyable. You pretty much cannot fail.
     Also, two nights ago, Andrew had this discussion with B:

      Andrew: B, would you like a chainsaw?
       B: *nods, smiling*
       Andrew: What would you do with a chainsaw?
       B: Cut off everybody's arms...
       Andrew: Oh, now we know who's not getting a chainsaw for Christmas. Oh! Here, B... what you should have said is, "I'd build homes for the homeless!"
       B: Out of arms?


I am SO proud.


Wednesday, December 8, 2010

Last Week

     Last week was just great, full of magic kittens, lollipop adventures, and beeyoootiful queens with awesome powers.
     Except not.
      B felt just horrible on this med. She basically just tried to sit on me all week, really, I am not kidding. She wouldn't leave me alone to do anything, and would follow me to room to room. And if I begged for some time to myself, she would have a huge temper tantrum. It was really sad. She didn't go school. She had headaches.
     So I phoned her neurologist and explained the horrible state of my child, the dwindling of my sanity, and the fact that she's still having seizures anyways. I'd rather have the seizures than this angry, morose girl.
     So we're taking her of these meds. He has one more he'd like to try, but regardless, the surgery will remain on the table.
     On top of that, I had a huge fight with my best friend which, quite frankly, in the cold light of morning, doesn't look that it will be resolved. And it's not something I think we can just not fix, and she doesn't seem to want to try. So, that's that.
     It was an emotional, exhausting week.
     And, oh goody, look, here comes another one.

Friday, December 3, 2010

Waiters That Flush

     I did talk B out for a walk the other night. Usually she LOVES night time walks, but she is just fatigued lately.
     When we walk, we like to talk about which houses we would like to live in.
     The other night I said, "What about this house? Would you like to live there?" pointing out a pink stucco covered house.
      "Yes. That kind of house comes with a waiter."
     "Yes, and with a waiter, you don't even need to flush the toilet."
     "You don't?"
     "Nope, the waiter flushes it for you," she made a flush motion with her hands.
     "Wow. I wish we had a waiter."
     "You need that kind of house. And they are expensive. You need $20,000!"
     "I see."
     We walked in silence for awhile, and then I said, "Are you sure you don't mean a butler?"
     "Oh yeah, " she laughed. "A butler."
     "Because I think a guy serving you a hamburger would be pretty surprised that he had to come flush your toilet."

Thursday, December 2, 2010

More Applying For Apparently Invisible and Imaginary Services

     Today B and I had a visit from the lady who assesses children for the At Home program. She was nice, but I'm rather burnt out right now and very tried of applying to programs that turn us down all the time, even though, as this woman noted, B has the most complex profile she has encountered. But as usual, B surpasses or has disabilities outside the range of the questionaire. The woman asked if B can use a spoon or put on a shirt. She can do both. She can go get neither, or will sit in front of her food and forget to eat, or get get an inappropriate shirt if she does actually manage to find them. If she were spoon fed, she fits the profile, but because the problems are that she can't be left alone to eat in case she has a seizure, she doesn't.
     Half way through I told the woman that if I seemed lacklustre to her, it wasn't because of her, it's because I don't even see the point of applying for stuff anymore. She gets turned down from VSB special programs. It's December and we still haven't heard if she'll get funding for out of school care, which I guess means I'm pretty lucky I don't need it yet. She got turned down from Big Sisters, Worry Dragons, and now that school program I had hopes for has turned her down as well.
     On top of that, she's had a horrible week of headaches and lethargy from her meds. She has practically sat on me the whole week, and if I go to another room, she follows me. She hasn't had a Complex Partial since that day she had three, but seems to be having absence seizures. I can't really tell because she's so foggy and angry right now. She needs to come off these meds, but I do not have any other med choices available.
     She did cheer up when I offered to replace her spleen with a waffle maker today. The At Home woman laughed, too.
     If she qualifies for at least the medical portion of the At Home program, she can get physiotherapy, speech therapy, and occupational therapy, as well as other things, so cross you fingers, or your legs, or eyes, whatever your religion dictates, for us.