Gary's scan results were good, even great! Instead of growth there has actually been some shrinkage.
And Cassie performed in her high school choir's broadway show, sang a solo and was really good! Mom and I were bawling like babies. Everyone applauded long and loud and she's still riding high on that one!
Thought I'd write something POSITIVE for once...it's good to have something positive to write.
Happy Thanksgiving!
Sunday, November 21, 2010
Thursday, November 18, 2010
School Days
The school year started off so well. Cassie started taking Wellbutrin just prior to the beginning of school and it seemed like a wonder drug. She responded remarkably well and we were on cloud nine, thinking that maybe we'd found the magic pill that would solve all Cassie's problems. Yea, right.
Cassie's therapist suggested she was 'ramping up' and we pooh-poohed that because we were just so glad to not have the Tazmanian Devil in our house. At this point we figured mania would seem like paradise compared to despair. Maybe unrelated, but within weeks she had a seizure at school. What a scene that was and it was all downhill from there. While the ER docs couldn't agree that it was actually a seizure, I believe it was and after some research we thought maybe the Wellbutrin, our wonder drug, could have been the culprit. We were between a rock and a hard place though, because since she had been doing so well she was scheduled to go to a choir camp that weekend and I had decided she was well enough that I could fly out to see Gary and Missy in Idaho,expecting she would be happily ensconsed at camp most of the nights I was gone.
I'd gambled on both counts that the chapter of wellness would continue and I lost. Not knowing she would no longer respond favorably to the Wellbutrin, we kept her on it out of fear of how she would handle the upcoming stressors without the very chemical we believed was allowing us to take those risks. I went to Idaho, Cassie went to camp, and all hell broke loose. My phone started ringing at church on Sunday, right after Cassie finished camp and it was one of those episodes I'd like to forget. I finished my visit with G & M with dread in my heart, imagining what I'd come home to.
Gary went into his study and didn't emerge for weeks. He started having new symptoms we'd never seen before. Cassie's depression swallowed her up until she couldn't get out of bed in the morning. She was/is terrified of the voices, which by this time were almost continually screaming. We temporarily put her on a delayed school schedule, which meant that she missed math every day. A few days she didn't go to school at all. I gathered every ounce of imagination and bribery skill I possessed to get her to school every day. It was exhausting. Then she'd come home from school completely freaked out from having been at school.
Most worrisome was that she was taking her bad behavior outside our home, which had never been a problem up til now. Gary received a phone call from the dad of Cassie's Okemos 'enemy'. Cassie had been texting some pretty terrible things to her. The same day I found out that she'd been hanging around with the school thugs after lunch. That explained the language she'd been spewing lately and part of the source of her unhappiness. She'd also treated one of the young women at church very badly at a dance, sending this poor girl home in tears. I was not exactly surprised by this new development, knowing how she can be at home. I guess you could say it was a resigned feeling of 'oh crap, what fresh hell are we going to have to deal with now??' Each offense called for an explanation to the offended party and some form of atonement by Cassie and then hope for understanding. And, of course, trying to reason with and apply appropriate discipline to an unreasonable, unbalanced child.
Then, suddenly, the switch flipped again and she started getting better. But on Halloween afternoon she had another seizure and this time I was there to witness it. The first time the hospital hadn't provided me with information and I, so convinced it was a one-time occurrence, didn't bother to educate myself on seizures. As she lay on her back, seemingly not breathing, it didn't occur to me to turn her on her side. Fortunately, it did occur to Gary, and as he did that, it was evident she was choking on some fluid. Again, ambulance to the ER. Followed by EEG (normal) and neurology (normal, although some weakness on the left side).
This time, we knew we needed to withdraw the Wellbutrin. It certainly wasn't helping and was quite possibly causing the seizures. What followed the withdrawal was another trip to the pit of despair and even her professional helpers noticed she was worse than normal. I'm not sure if medication withdrawal was the source of this downturn, or maybe the fact that it also coincided with the time change (daylight savings).
I have to commend the school for helping and not exacerbating the problems we've been having. Frankly, I can't imagine Okemos being anywhere near as accomodating or creative or even receptive to suggestions as Stockbridge has been. Hostility was the status quo there. I find the atmosphere so much more relaxed and friendly and the staff is just exemplary. Cassie's teacher is amenable to any changes we need to make and open to any and all suggestions.
I knew the thing she needed most of all was some positive peer interaction and an English teacher who facilitates yearbook suggested Cassie join. It's a class in the middle of the day comprised of mostly 11th and 12th graders. While we're only in the second week of this change, Cassie has expressed to me she 'loves it'. A ray of hope.
Last week, about Friday or so, happy mode started again and I'm grateful for that. She was so great, I couldn't stop hugging her and I said, 'Cassie I wish you could be like this all the time!' She replied, 'I know Mom, but I can't because of my disease.' Insight is a good thing. We're starting to rate days 1 to 5 according to her mood. 1 being as good as it gets and 5 being hospitalized. Our thinking is that it might help our stress level to be able to predict some of this stuff. That is, if it's following a pattern. At least it gives us some illusion of control!
Today I'm at Ohio State University Cancer Center with Gary, awaiting test results. He's convinced he's getting bad news. I sure hope not. I really don't need more fodder for my blog.
Cassie's therapist suggested she was 'ramping up' and we pooh-poohed that because we were just so glad to not have the Tazmanian Devil in our house. At this point we figured mania would seem like paradise compared to despair. Maybe unrelated, but within weeks she had a seizure at school. What a scene that was and it was all downhill from there. While the ER docs couldn't agree that it was actually a seizure, I believe it was and after some research we thought maybe the Wellbutrin, our wonder drug, could have been the culprit. We were between a rock and a hard place though, because since she had been doing so well she was scheduled to go to a choir camp that weekend and I had decided she was well enough that I could fly out to see Gary and Missy in Idaho,expecting she would be happily ensconsed at camp most of the nights I was gone.
I'd gambled on both counts that the chapter of wellness would continue and I lost. Not knowing she would no longer respond favorably to the Wellbutrin, we kept her on it out of fear of how she would handle the upcoming stressors without the very chemical we believed was allowing us to take those risks. I went to Idaho, Cassie went to camp, and all hell broke loose. My phone started ringing at church on Sunday, right after Cassie finished camp and it was one of those episodes I'd like to forget. I finished my visit with G & M with dread in my heart, imagining what I'd come home to.
Gary went into his study and didn't emerge for weeks. He started having new symptoms we'd never seen before. Cassie's depression swallowed her up until she couldn't get out of bed in the morning. She was/is terrified of the voices, which by this time were almost continually screaming. We temporarily put her on a delayed school schedule, which meant that she missed math every day. A few days she didn't go to school at all. I gathered every ounce of imagination and bribery skill I possessed to get her to school every day. It was exhausting. Then she'd come home from school completely freaked out from having been at school.
Most worrisome was that she was taking her bad behavior outside our home, which had never been a problem up til now. Gary received a phone call from the dad of Cassie's Okemos 'enemy'. Cassie had been texting some pretty terrible things to her. The same day I found out that she'd been hanging around with the school thugs after lunch. That explained the language she'd been spewing lately and part of the source of her unhappiness. She'd also treated one of the young women at church very badly at a dance, sending this poor girl home in tears. I was not exactly surprised by this new development, knowing how she can be at home. I guess you could say it was a resigned feeling of 'oh crap, what fresh hell are we going to have to deal with now??' Each offense called for an explanation to the offended party and some form of atonement by Cassie and then hope for understanding. And, of course, trying to reason with and apply appropriate discipline to an unreasonable, unbalanced child.
Then, suddenly, the switch flipped again and she started getting better. But on Halloween afternoon she had another seizure and this time I was there to witness it. The first time the hospital hadn't provided me with information and I, so convinced it was a one-time occurrence, didn't bother to educate myself on seizures. As she lay on her back, seemingly not breathing, it didn't occur to me to turn her on her side. Fortunately, it did occur to Gary, and as he did that, it was evident she was choking on some fluid. Again, ambulance to the ER. Followed by EEG (normal) and neurology (normal, although some weakness on the left side).
This time, we knew we needed to withdraw the Wellbutrin. It certainly wasn't helping and was quite possibly causing the seizures. What followed the withdrawal was another trip to the pit of despair and even her professional helpers noticed she was worse than normal. I'm not sure if medication withdrawal was the source of this downturn, or maybe the fact that it also coincided with the time change (daylight savings).
I have to commend the school for helping and not exacerbating the problems we've been having. Frankly, I can't imagine Okemos being anywhere near as accomodating or creative or even receptive to suggestions as Stockbridge has been. Hostility was the status quo there. I find the atmosphere so much more relaxed and friendly and the staff is just exemplary. Cassie's teacher is amenable to any changes we need to make and open to any and all suggestions.
I knew the thing she needed most of all was some positive peer interaction and an English teacher who facilitates yearbook suggested Cassie join. It's a class in the middle of the day comprised of mostly 11th and 12th graders. While we're only in the second week of this change, Cassie has expressed to me she 'loves it'. A ray of hope.
Last week, about Friday or so, happy mode started again and I'm grateful for that. She was so great, I couldn't stop hugging her and I said, 'Cassie I wish you could be like this all the time!' She replied, 'I know Mom, but I can't because of my disease.' Insight is a good thing. We're starting to rate days 1 to 5 according to her mood. 1 being as good as it gets and 5 being hospitalized. Our thinking is that it might help our stress level to be able to predict some of this stuff. That is, if it's following a pattern. At least it gives us some illusion of control!
Today I'm at Ohio State University Cancer Center with Gary, awaiting test results. He's convinced he's getting bad news. I sure hope not. I really don't need more fodder for my blog.
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