It's been awhile since I posted anything. I guess things have gotten very intense and I needed to back away from it all for a while, but I've had people write and ask for an update, and there is a lot to share.
In the fall, we finally found B a good high school Life Skills program. The program is a good fit, and for the first time in her whole school experience, B does not feel set apart from her classmates, as they all have developmental and health concerns like hers. She's made friends, and has a boyfriend, which is very sweet. She kissed him, and I think they hold hands at lunch. She also now has a BFF, who phones her at home and demands that I get her a puppy as well. It makes me happy to see her chatting on the phone with a friend.
She continues to have anger and behavioural issues, which her neurologist thinks is related to her seizure disorder. We have a behavioural consultant, but last week she beat me up twice, and I admit that it can be hard for me to read about my friends and their kids, and how they are excelling at school and socially, when last week it was all I could do to physically wrestle B on to the bus, in her pajamas and covered in hot chocolate. Standing on the street and holding her while she punched me, people stopping to stare, I felt horrible and sad for her. And me. The behaviour consultant is nice, but her recommendations so far are mostly things we already do, but still, I have to try.
B's seizures are back, although her seizure patterns keep changing. We've exhausted all the medications, save one. That med is Keppra, and it is so expensive that we need special government permission to get it. A friend from the states said it cost more than her mortgage each month. But I can't give it to her, because it can increase her behaviour issues, and of the two, the behaviour issues can cause the most problems for her.
In lieu of medication options, I instead decided to have her assessed for surgery. We spent a week in the hospital, with B hooked up to an EEG, tied to the wall by a fifteen foot cord, lights on 24 hours a day, and sleep depriving her. She didn't have one seizure. She had discharges, but it was not enough, so we need to do it again. She did have a new MRI, which showed a huge scar in her right occipital and parietal lobe, and that the right side of her brain is significantly smaller than her left. Still, she is amazing in how much she has compensated, and is a walking testimony to the plasticity of a baby's brain.
As for me, I have been trying to maintain a good balance between caring for her and caring for myself. I have kept up a consistent Paleo diet, exercised regularly, and am nearing a 100lb weight loss. I feel physically good. I walk, ride a bike, and weight lift regularly. I find this is important, because I can get so lost in everything I need to do for B. Andrew is better at taking time for himself. It is a skill I need to work at.
I still would like a decent and flexible job. Not working, beyond my own writing, and not contributing financially to our household is very hard on me. But I need a job that allows for appointments, and random time off, and that is not easy to find. I do what I can.
I will get back to posting more regularly, and keep you up to date on her treatments.My next goal is trying to get funding to buy this bike , because Lordy, I cannot take the heart attack of her trying to ride down the street, with her eyesight and hearing issues, a seizure happening at any random time.
Oh, yeah, she got a hearing aid.
Showing posts with label Seizures. Show all posts
Showing posts with label Seizures. Show all posts
Tuesday, February 21, 2012
Wednesday, February 23, 2011
Identity
A little while ago, B told me that she was the only invisible kid in her class. By this, she actually means, "invisible disability". She's not. Half the kids have a disability that is recognised, and likely there are a couple more that have a disability but no diagnosis. But she is the only kid in her class that constantly has to be with a worker, she can't even walk down the stairs by herself, and she is the only one that barely attends class, has a parent pick her up and drop her off everyday, and has a special computer. I'm sure it makes her feel very conspicuous.
Even if I wasn't the type of mom who feels that she has to know all about her own health, so she'll learn to advocate for herself, or that thinks that she gets to have input into her care, or thinks that personal experiences of otherness need to be freely addressed, there is no way she would not understand that she is different than other kids. She has doctors and medication and different rules at home and at school. She is disabled, and she is very aware of that.
But I don't like that if you ask B who she is, one of the first things, if not the first thing, she will say is disabled. She is so many other things. I am not ashamed of her being disabled, and I don't want her to be either, but I don't want her identity to be so closely reliant on what the perceived limitations of disability are. And yet, other than constantly reinforcing all the other things she is, beautiful, smart, kind, I don't know how to direct her away from the glaringly bright spectre of disability which inserts itself into every aspect of her life.
A week or so ago she was reading a book on body language. Out of the blue, she turned to me and said, "Very few people want to be my friend," and I felt such sorrow for her. How does a kid that can't interact with peers in the ways they interact make friends? She can't go anywhere without the interfering presence of her mom or another adult. At school she is apart because of the attention and support she receives. She doesn't understand her peers, and cannot engage them at a preteen level, and she is wholly isolated by the fact that there simply exist no social groups of children like her. The groups for children with developmental disabilities always include children with behavioural issues, which she just can't cope with, or require an IQ under 70, and the groups for sensitive, anxious, shy kids are never able to accommodate her seizures. There are no seizure social groups, and having a seizure disorder does not usually include developmental problems. Everywhere she turns, she's the odd one out.
And so she has adult friends, or little kid friends, which are nice friends but not the same. And as much as I am sure there MUST be other kids like her, finding a group that accommodates moderate delay AND a sensitive nature AND a chronic health problem has proven impossible for me up to this point. And my requests to the medical profession for assistance in contacting such families have met with no success.
And so how do I help her see past her disabilities?
Even if I wasn't the type of mom who feels that she has to know all about her own health, so she'll learn to advocate for herself, or that thinks that she gets to have input into her care, or thinks that personal experiences of otherness need to be freely addressed, there is no way she would not understand that she is different than other kids. She has doctors and medication and different rules at home and at school. She is disabled, and she is very aware of that.
But I don't like that if you ask B who she is, one of the first things, if not the first thing, she will say is disabled. She is so many other things. I am not ashamed of her being disabled, and I don't want her to be either, but I don't want her identity to be so closely reliant on what the perceived limitations of disability are. And yet, other than constantly reinforcing all the other things she is, beautiful, smart, kind, I don't know how to direct her away from the glaringly bright spectre of disability which inserts itself into every aspect of her life.
A week or so ago she was reading a book on body language. Out of the blue, she turned to me and said, "Very few people want to be my friend," and I felt such sorrow for her. How does a kid that can't interact with peers in the ways they interact make friends? She can't go anywhere without the interfering presence of her mom or another adult. At school she is apart because of the attention and support she receives. She doesn't understand her peers, and cannot engage them at a preteen level, and she is wholly isolated by the fact that there simply exist no social groups of children like her. The groups for children with developmental disabilities always include children with behavioural issues, which she just can't cope with, or require an IQ under 70, and the groups for sensitive, anxious, shy kids are never able to accommodate her seizures. There are no seizure social groups, and having a seizure disorder does not usually include developmental problems. Everywhere she turns, she's the odd one out.
And so she has adult friends, or little kid friends, which are nice friends but not the same. And as much as I am sure there MUST be other kids like her, finding a group that accommodates moderate delay AND a sensitive nature AND a chronic health problem has proven impossible for me up to this point. And my requests to the medical profession for assistance in contacting such families have met with no success.
And so how do I help her see past her disabilities?
Monday, February 14, 2011
B's New Meds
Well, B has been on her new anti-depressant for over a month now, and I think there's been an improvement. She's started actually doing things without me again. She will go and watch a movie, or play on her Wii, instead of just hanging on me all day. And she's started to make things again. The other day, we made a book shaped like a hand, to write down reasons we are thankful. It's very cute.
Also, she's more chatty. Tonight she was very entertaining, telling me all about the "Other Mother" with no eyes, with whom she made pancakes (from Coraline). And she asked me to teach her to cook, so I had her help me with dinner.
She's still not keen on going out much, and still isn't into going to school much. Also, she's still sleeping a lot, and having trouble with decisions. So, we've increased her meds, and I'm going to keep her other meds the same, but hopefully she'll continue to improve.
She's been having night time seizure activity, and some absence episodes, but no Complex Partials since Christmas day. None of that really means anything, she's had periods of lower seizure activity before, but it's a nice break.
Man, would I love for her to get back to full time school, so that I can get a job. Andrew won't give me his job, even though I think that if I comb my hair just right, we're identical!
Also, she's more chatty. Tonight she was very entertaining, telling me all about the "Other Mother" with no eyes, with whom she made pancakes (from Coraline). And she asked me to teach her to cook, so I had her help me with dinner.
She's still not keen on going out much, and still isn't into going to school much. Also, she's still sleeping a lot, and having trouble with decisions. So, we've increased her meds, and I'm going to keep her other meds the same, but hopefully she'll continue to improve.
She's been having night time seizure activity, and some absence episodes, but no Complex Partials since Christmas day. None of that really means anything, she's had periods of lower seizure activity before, but it's a nice break.
Man, would I love for her to get back to full time school, so that I can get a job. Andrew won't give me his job, even though I think that if I comb my hair just right, we're identical!
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.
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.
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.
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.
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.
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.
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
Anxiety
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.
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.
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.
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.
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, September 19, 2010
Doctors
This past week, B had two specialist appointments. We saw a pediatric gynecologist on Wednesday. What an incredible specialty. Only two such specialists practice in Vancouver. We discussed suppressing B's menstrual cycle, because I don't think she will have the ability to handle it, and the public health nurse, her pediatrician, and her neurologist all agree. B will not remember to check and change her pads, and would likely need physical help to do that. I want to spare her the stress of having to do all that.
Our choices are hormonal treatments, of which there are less choices than with adult women, or a Mirena IUD, if her uterus is large enough to accommodate one. I don't want to do anything that will affect her ability to have children in the future. I don't feel that I should make that choice for her, and certainly not now. Nor do I want to affect her libido in any way, as I have no reason to expect that she will not want to have loving, sexual relationships when she becomes an adult.
We have to wait until she menstruates to do anything, but the appointment answered my questions, and helped me to feel like I've made a good choice. Before the appointment, I showed her videos on menstruation, and then some on fetal development. The one on fetal development had a rotating 3-D representation of a fetus and, for some reason, B found it uproariously funny. She laughed all the way through it, then ran into the kitchen and yelled, "I am a fetus. I am just developing arms!" then she started spinning and said, "Now I am at 26 weeks," and laughed herself into hysterics. I laughed because of her laughter, but I remain unclear on why she found it so very funny. I suppose that I've just not mined fetal development as a source of comedy, but I should start.
In the waiting room she played with a Rube Goldberg machine. It has two wheels that, when you turn them, move balls up and down a complex series of buckets and ramps. Even I find it very captivating. As she played with it, a young boy about her age came in with his grandmother. He seemed very angry about something, flopping down in a chair, crossing his arms, and giving Grandma the old stink eye. But then he saw B, turning the wheels on the machine, and he went over and asked if he could play. She said sure, and he sat down and started giving directions, to which she kept replying, "I know that," growing quickly annoyed at him.
"Do you come here a lot?" he asked her, "I do. I am a hemophiliac. Do you know what that means? It means I have special blood. If I cut myself," he drew a hand across his arm, "I could bleed to death!"
She turned to him and said, "Do you know that I had a stroke? Do you know what a stroke is? It is when a blood clot goes into your brain. If you had a seizure, you would scream!"
"Oh," he said. And then they repeated the whole conversation.
I found the conversation fascinating, sad, funny, and very revealing. B does not usually volunteer so much information, and I found myself thinking that the two of them would make good friends. But grandma did not look very happy and I let it go. Children's hospital is very stressful, and you have to get a good read on people before you just approach them.
On Friday, we saw her neurologist. Apparently I had missed some calls the day before changing the time from 9:30 a.m. to noon, but after some phone calls the doctor came in at 10:30, so we didn't wait long. The nurse took B for weighing and blood pressure, and I went right into the doctor. We have decided to change her meds, from Lamotrigine and Epival, to Epival and Tegretol. The next few weeks will prove stressful, as I wean her slowly off the Lamotrigine while slowly increasing the Tegretol. That means taking three seizure meds until the process finishes. As usual, I hope this combination will work, but have to remain practical that it might not.
After we got home, the doctor's nurse phoned to tell me that when she had B alone, in response to the nurse's casual chat while she weighed her, B had said she wanted to blow up her school. She doesn't mean that, of course, she picked it up somewhere, and it entered into her series of perseverations that occur when she feels anxious. But, of course, the nurse does have to report it to me, and I have to report it to her new counsellor who will take over her therapy in October. I have had many talks with her about why saying such things might scare people, and had another talk with her after talking to nurse, during which she felt awful, guilty, and embarrassed despite mine and Andrew's assurances that we know she doesn't mean it, didn't mean to say it, and that we both love her.
In other news, she had two seizures this week, one on Wednesday crossing First Ave. at Commercial, which scared me because I had to hold up the traffic, and one tonight, in the bathtub. I can't pick her up anymore, so I will have to get a bath chair or something, because trying to move her around the bathtub has become very difficult.
Our choices are hormonal treatments, of which there are less choices than with adult women, or a Mirena IUD, if her uterus is large enough to accommodate one. I don't want to do anything that will affect her ability to have children in the future. I don't feel that I should make that choice for her, and certainly not now. Nor do I want to affect her libido in any way, as I have no reason to expect that she will not want to have loving, sexual relationships when she becomes an adult.
We have to wait until she menstruates to do anything, but the appointment answered my questions, and helped me to feel like I've made a good choice. Before the appointment, I showed her videos on menstruation, and then some on fetal development. The one on fetal development had a rotating 3-D representation of a fetus and, for some reason, B found it uproariously funny. She laughed all the way through it, then ran into the kitchen and yelled, "I am a fetus. I am just developing arms!" then she started spinning and said, "Now I am at 26 weeks," and laughed herself into hysterics. I laughed because of her laughter, but I remain unclear on why she found it so very funny. I suppose that I've just not mined fetal development as a source of comedy, but I should start.
In the waiting room she played with a Rube Goldberg machine. It has two wheels that, when you turn them, move balls up and down a complex series of buckets and ramps. Even I find it very captivating. As she played with it, a young boy about her age came in with his grandmother. He seemed very angry about something, flopping down in a chair, crossing his arms, and giving Grandma the old stink eye. But then he saw B, turning the wheels on the machine, and he went over and asked if he could play. She said sure, and he sat down and started giving directions, to which she kept replying, "I know that," growing quickly annoyed at him.
"Do you come here a lot?" he asked her, "I do. I am a hemophiliac. Do you know what that means? It means I have special blood. If I cut myself," he drew a hand across his arm, "I could bleed to death!"
She turned to him and said, "Do you know that I had a stroke? Do you know what a stroke is? It is when a blood clot goes into your brain. If you had a seizure, you would scream!"
"Oh," he said. And then they repeated the whole conversation.
I found the conversation fascinating, sad, funny, and very revealing. B does not usually volunteer so much information, and I found myself thinking that the two of them would make good friends. But grandma did not look very happy and I let it go. Children's hospital is very stressful, and you have to get a good read on people before you just approach them.
On Friday, we saw her neurologist. Apparently I had missed some calls the day before changing the time from 9:30 a.m. to noon, but after some phone calls the doctor came in at 10:30, so we didn't wait long. The nurse took B for weighing and blood pressure, and I went right into the doctor. We have decided to change her meds, from Lamotrigine and Epival, to Epival and Tegretol. The next few weeks will prove stressful, as I wean her slowly off the Lamotrigine while slowly increasing the Tegretol. That means taking three seizure meds until the process finishes. As usual, I hope this combination will work, but have to remain practical that it might not.
After we got home, the doctor's nurse phoned to tell me that when she had B alone, in response to the nurse's casual chat while she weighed her, B had said she wanted to blow up her school. She doesn't mean that, of course, she picked it up somewhere, and it entered into her series of perseverations that occur when she feels anxious. But, of course, the nurse does have to report it to me, and I have to report it to her new counsellor who will take over her therapy in October. I have had many talks with her about why saying such things might scare people, and had another talk with her after talking to nurse, during which she felt awful, guilty, and embarrassed despite mine and Andrew's assurances that we know she doesn't mean it, didn't mean to say it, and that we both love her.
In other news, she had two seizures this week, one on Wednesday crossing First Ave. at Commercial, which scared me because I had to hold up the traffic, and one tonight, in the bathtub. I can't pick her up anymore, so I will have to get a bath chair or something, because trying to move her around the bathtub has become very difficult.
Tuesday, August 17, 2010
B's Seizures
B's seizures are a huge, time robbing part of her life. She has had several different kinds. The most recognisable type, what are now called Tonic Clonic and used to be called Grand Mal, are the ones that cause loss of consciousness and rhythmic jerking. B has these ones rarely, and only when sleeping. Usually these involve transport to the hospital as they last a long time for her.
Absence episodes, which used to be called Petite Mal, started when she was seven. They aren't obvious, she merely stops and stares blankly for about 30 seconds, then comes back and complains of a stomach ache. It took me about six months to realise that she wasn't just zoning out, a fact that made me feel very bad. We would be walking somewhere and she would just stop and go stiff, then crumple up as they ended. I just hadn't heard of them and she had been seizure free for quite awhile so I wasn't looking for seizures.
Complex Partials are the most identifiable types she commonly has now. She has them a few times a week despite her medications. They are the most disconcerting and dangerous. She may start out aware that she's starting to have a seizure, which is terrifying for her. She usually moans, spits, and blanks out for them, or she may engage in movements, grasping things or walking off in a random direction. This makes them dangerous when we are out walking, she can't control the movement and can easily walk off in any direction including into traffic or down a flight of stairs. She has choked on food.
Finally, she has subclinicals, or just random misfirings, all the time. These don't manifest physically, neither she nor any observer are aware of them, they are only recognisable on an EEG. The frequency of these varies, and on some EEGs they are more noted than on others, but they are the most impacting, because they interfere with her experience of time. They prevent her from processing what is happening and destroy her ability to make memories. This makes part of her daily life inconsequential, since she neither knows what is going on nor adds to her level of experience. I think that is part of why she is young for her age. While other children have continuous growth and information processing everyday, she does not.
Seizures severely limit her activities. She cannot be left alone around water, while she eats, and she cannot walk the half block to school by herself nor play on the playground climbing gym unless she goes with someone able to catch and hold her. It is simply too dangerous. She must hold some one's hand down stairs, in traffic, and while getting on and off buses.
Additionally, she has trouble accessing many things that other kids take for granted. Attending after school programs and recreation programs takes us much more work than most other people, and some have refused to take her, but that will get its own post.
Absence episodes, which used to be called Petite Mal, started when she was seven. They aren't obvious, she merely stops and stares blankly for about 30 seconds, then comes back and complains of a stomach ache. It took me about six months to realise that she wasn't just zoning out, a fact that made me feel very bad. We would be walking somewhere and she would just stop and go stiff, then crumple up as they ended. I just hadn't heard of them and she had been seizure free for quite awhile so I wasn't looking for seizures.
Complex Partials are the most identifiable types she commonly has now. She has them a few times a week despite her medications. They are the most disconcerting and dangerous. She may start out aware that she's starting to have a seizure, which is terrifying for her. She usually moans, spits, and blanks out for them, or she may engage in movements, grasping things or walking off in a random direction. This makes them dangerous when we are out walking, she can't control the movement and can easily walk off in any direction including into traffic or down a flight of stairs. She has choked on food.
Finally, she has subclinicals, or just random misfirings, all the time. These don't manifest physically, neither she nor any observer are aware of them, they are only recognisable on an EEG. The frequency of these varies, and on some EEGs they are more noted than on others, but they are the most impacting, because they interfere with her experience of time. They prevent her from processing what is happening and destroy her ability to make memories. This makes part of her daily life inconsequential, since she neither knows what is going on nor adds to her level of experience. I think that is part of why she is young for her age. While other children have continuous growth and information processing everyday, she does not.
Seizures severely limit her activities. She cannot be left alone around water, while she eats, and she cannot walk the half block to school by herself nor play on the playground climbing gym unless she goes with someone able to catch and hold her. It is simply too dangerous. She must hold some one's hand down stairs, in traffic, and while getting on and off buses.
Additionally, she has trouble accessing many things that other kids take for granted. Attending after school programs and recreation programs takes us much more work than most other people, and some have refused to take her, but that will get its own post.
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