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.
Monday, December 27, 2010
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.
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?
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?
:-D
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.
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."
"Really?"
"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."
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."
"Really?"
"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.
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.
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.
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.
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.
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.
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.
Monday, October 25, 2010
Losing My Voice
I have had absolutely no voice for the better part of a week now, and barely a voice for the week previous. I have chronic laryngitis, something I have had many times in the past. My mother, brother, and I all have susceptible throats.
It has been very hard to parent B through this. She does not pick up on non verbal cues, can't remember from one minute to the next that I can't talk, and has been very argumentative for the last couple of days due, no doubt, to the absence of my usual constant verbal assurances of love and support.
Her memory has been worse than usual lately, from the medication change. We watched some Invader Zim episodes the other day, and she LOVES Zim, and she kept asking me throughout the program what was going on. That's bad.
The memory problems lead to frustration, which in turn lead to anger, guilt, and anxiety, which impacts her behaviour even worse. So it's been a weekend of me getting frustrated because I have to repeat things constantly, even though I can't talk, and her feeling anxious because I am shorter than usual out of necessity. Not a winning combination for home time.
B is actually a lot like Gir. I love Gir.
It has been very hard to parent B through this. She does not pick up on non verbal cues, can't remember from one minute to the next that I can't talk, and has been very argumentative for the last couple of days due, no doubt, to the absence of my usual constant verbal assurances of love and support.
Her memory has been worse than usual lately, from the medication change. We watched some Invader Zim episodes the other day, and she LOVES Zim, and she kept asking me throughout the program what was going on. That's bad.
The memory problems lead to frustration, which in turn lead to anger, guilt, and anxiety, which impacts her behaviour even worse. So it's been a weekend of me getting frustrated because I have to repeat things constantly, even though I can't talk, and her feeling anxious because I am shorter than usual out of necessity. Not a winning combination for home time.
B is actually a lot like Gir. I love Gir.
Tuesday, October 19, 2010
The Last Three Weeks
I took B into have breakfast at the school Friday morning (I'm too sick to go shopping) and she had a seizure while eating her cereal, so I brought her home.
She has now missed most of the last three weeks of school. This is why I can't have a job, even though I want one, until we find meds that work. It's really depressing. Sometimes it feels like her disabilities are the whole framework of our lives. I can't move anywhere far from the hospital and doctors. I can't even take her camping more than a half hour away from a hospital. My sister went to the states this weekend, something that I can't do with B unless she's insured, really, really insured, and what company would touch us with a ten-foot pole? Every week I have to discuss and fill out forms and book and make appointments. I have to track the meds, her reactions to the meds, and make sure I'm within a few minutes of the school everyday.
And then I talk about her, and I feel like, "Is this the only thing going in my life? In her life?" And it's not, but it does overshadow and colour everything we do. I don't want her life to be shaped and ordered by disability, and yet now it's all I see. I am terribly worried about where to send her for high school. I've been after the school based team for two years now, to present me with options, and NOTHING. Not one choice have they presented, which really worries me. Each one will have to be seen, interviewed, and will have an application process. I need time to do that.
She has now missed most of the last three weeks of school. This is why I can't have a job, even though I want one, until we find meds that work. It's really depressing. Sometimes it feels like her disabilities are the whole framework of our lives. I can't move anywhere far from the hospital and doctors. I can't even take her camping more than a half hour away from a hospital. My sister went to the states this weekend, something that I can't do with B unless she's insured, really, really insured, and what company would touch us with a ten-foot pole? Every week I have to discuss and fill out forms and book and make appointments. I have to track the meds, her reactions to the meds, and make sure I'm within a few minutes of the school everyday.
And then I talk about her, and I feel like, "Is this the only thing going in my life? In her life?" And it's not, but it does overshadow and colour everything we do. I don't want her life to be shaped and ordered by disability, and yet now it's all I see. I am terribly worried about where to send her for high school. I've been after the school based team for two years now, to present me with options, and NOTHING. Not one choice have they presented, which really worries me. Each one will have to be seen, interviewed, and will have an application process. I need time to do that.
Friday, October 8, 2010
Hell Week
Well, this has certainly not been an enjoyable week. B developed a high fever last week, which I assumed indicated she had a cold, since both Andrew and I had bad colds the week before. Then, last Saturday I woke to her having a long (2 minutes) Complex Partial in bed next to me. That would be the reason why I sleep with her. Vomiting and heavy drooling present a choking hazard.
On Sunday her face turned brilliant red and swell up and she still had a high fever, but didn't seem to have other cold symptoms. Sunday night, around 2 a.m., I became concerned that she actually showed a reaction to her meds, the new ones we had just started her on, Tegretol. I feared she might have Stevens-Johnson Syndrome, a horrible necrotizing skin disorder that people can develop from plenty of different medications, but has more links to specific types, like anti-convulsants. I have been told every time she starts or comes off a med to watch for it.
I phoned the nurse's line, but the nurse, who I found to be very kind, couldn't really offer direction. We both decided to wait until the morning to see how B felt.
In the morning she had a rash all over her torso, arms, and up her neck onto her chin. I had a mini panic and got her into the GP in an hour. He agreed that she had an allergic reaction, although he couldn't say for sure either way if she might have Stevens-Johnson. I felt better though, having seen him. The visit was followed by some phone calls to the neurologist, who asked that I bring her in right away, but since that proved impossible, we agreed to have an appt. on Thursday morning. We had actually originally had an appt. Thursday morning, but since she had seen him just two weeks previously, that appt. had been cancelled. Obviously, all this had been a plot by her to keep her commitments. :)
On Thursday she actually had three appointments, 9 a.m. at Children's Hospital, her GP at Hastings and Slocan at 10:30, and an appointment to meet her new counsellor at Child and Youth Mental Health at 2. What a hard and tiring day.
The neurologist has now prescribed Topamax, which belongs in a different drug family, so hopefully she won't have an allergy to it. She's on the mend, but has already had two seizures today, so I've given her an Ativan, which she has been prescribed for Anxiety, but they use it for treating seizures, too. I don't want her going into Status Epilepticus today, as I feel quite done with doctors this week, thank you. They are nice people, but, yeah, we've quite had enough.
But let this demonstrate that I KNEW something more had happened BEFORE she developed the rash. Parents KNOW their children, so do not EVER hesitate to be pushy and demanding in getting them help, and ALWAYS follow your instincts. No doctor is ever going to get angry at having examined a healthy child, not if they are a good doctor. If they do, then they are not a good doctor, get a new one. B's doctors are great.
One thing that worries me about the Topamax is that it induces anorexia (not anorexia nervosa), which she has already had from the Lamotrigine and which she had just recently recovered from somewhat. Oh well, high calorie, fat, and protein kid friendly snack and meal ideas are appreciated.
I am quite tried and pretty grumpy today. I think Andrew has hidden himself away to avoid my grumps.
On Sunday her face turned brilliant red and swell up and she still had a high fever, but didn't seem to have other cold symptoms. Sunday night, around 2 a.m., I became concerned that she actually showed a reaction to her meds, the new ones we had just started her on, Tegretol. I feared she might have Stevens-Johnson Syndrome, a horrible necrotizing skin disorder that people can develop from plenty of different medications, but has more links to specific types, like anti-convulsants. I have been told every time she starts or comes off a med to watch for it.
I phoned the nurse's line, but the nurse, who I found to be very kind, couldn't really offer direction. We both decided to wait until the morning to see how B felt.
In the morning she had a rash all over her torso, arms, and up her neck onto her chin. I had a mini panic and got her into the GP in an hour. He agreed that she had an allergic reaction, although he couldn't say for sure either way if she might have Stevens-Johnson. I felt better though, having seen him. The visit was followed by some phone calls to the neurologist, who asked that I bring her in right away, but since that proved impossible, we agreed to have an appt. on Thursday morning. We had actually originally had an appt. Thursday morning, but since she had seen him just two weeks previously, that appt. had been cancelled. Obviously, all this had been a plot by her to keep her commitments. :)
On Thursday she actually had three appointments, 9 a.m. at Children's Hospital, her GP at Hastings and Slocan at 10:30, and an appointment to meet her new counsellor at Child and Youth Mental Health at 2. What a hard and tiring day.
The neurologist has now prescribed Topamax, which belongs in a different drug family, so hopefully she won't have an allergy to it. She's on the mend, but has already had two seizures today, so I've given her an Ativan, which she has been prescribed for Anxiety, but they use it for treating seizures, too. I don't want her going into Status Epilepticus today, as I feel quite done with doctors this week, thank you. They are nice people, but, yeah, we've quite had enough.
But let this demonstrate that I KNEW something more had happened BEFORE she developed the rash. Parents KNOW their children, so do not EVER hesitate to be pushy and demanding in getting them help, and ALWAYS follow your instincts. No doctor is ever going to get angry at having examined a healthy child, not if they are a good doctor. If they do, then they are not a good doctor, get a new one. B's doctors are great.
One thing that worries me about the Topamax is that it induces anorexia (not anorexia nervosa), which she has already had from the Lamotrigine and which she had just recently recovered from somewhat. Oh well, high calorie, fat, and protein kid friendly snack and meal ideas are appreciated.
I am quite tried and pretty grumpy today. I think Andrew has hidden himself away to avoid my grumps.
Sunday, October 3, 2010
I Am A Part Of B's Brain
That's a weird title, but it has become more and more apparent to me lately that a big reason B doesn't like to spend time apart from me results from the fact that I have taken over certain functions that she lacks. I operate as a memory holder, a social guide, and an initiator of action for her. The world and casual social interactions remain a mystery to her, and until she grows comfortable with someone, she doesn't know what they expect from her. Those that do get to know her, I notice, also take on a part of this role, prompting her and forgiving her inability to master conversational skills. I wonder how much they notice that they do this as well?
In new situations she has trouble following even basic social cues. People will say hi to her and she will walk right past them. She has a friendly demeanour, so doing this seems odd. When people ask her what she did, or how she feels, she turns to me to tell what we did or how she feels. She doesn't do this because she can't expend the energy, nor does she do it as a cheat. She doesn't remember or doesn't know the appropriate response.
One thing that she has done to compensate is to manufacture memories that she doesn't possess. For instance, everything she remembers happened when she was four. I use 'remembers' loosely, lots of her memories are not real, but she understands that people have memories and so she has felt compelled to develop a scheme wherein she has memories. As a result, she says, "Mommy, remember that time we went on a boat when I was four?" and I say, "Yes, four was a very busy year for you." because she gets quite married to these "memories".
I also have to physically steer her around quite a bit. Because she lacks the areas of the brain that process spatial information, giving her directions to find something or get something doesn't work.
I have realised that doing without me is much more serious for her than other children, and that it has become a real source of anxiety for her for good reason. She doesn't want my continuous presence, she just needs her whole brain.
In new situations she has trouble following even basic social cues. People will say hi to her and she will walk right past them. She has a friendly demeanour, so doing this seems odd. When people ask her what she did, or how she feels, she turns to me to tell what we did or how she feels. She doesn't do this because she can't expend the energy, nor does she do it as a cheat. She doesn't remember or doesn't know the appropriate response.
One thing that she has done to compensate is to manufacture memories that she doesn't possess. For instance, everything she remembers happened when she was four. I use 'remembers' loosely, lots of her memories are not real, but she understands that people have memories and so she has felt compelled to develop a scheme wherein she has memories. As a result, she says, "Mommy, remember that time we went on a boat when I was four?" and I say, "Yes, four was a very busy year for you." because she gets quite married to these "memories".
I also have to physically steer her around quite a bit. Because she lacks the areas of the brain that process spatial information, giving her directions to find something or get something doesn't work.
I have realised that doing without me is much more serious for her than other children, and that it has become a real source of anxiety for her for good reason. She doesn't want my continuous presence, she just needs her whole brain.
Friday, September 24, 2010
One Friday Afternoon...
I had planned another post for today. Indeed, I already had it written, however, something happened today that I think is of more importance to talk about, and since it occupied most of my afternoon and I am still a bit het up about it, I'm going to write about that instead.
Today I went to pick B up from school, and one of the class aides said that B had said something weird at school, so they phoned her Mental Health office and reported it. She said none of the people felt angry about it, and they had just followed the direction of the vice-principal about it. They understood that B had just been joking around and that they knew B does not have violence issues, so I should not consider it a big deal. The thing that B said, jokingly to her pregnant teacher, was:
"Why don't you go home and eat your baby?"
Admittedly, it's a weird thing to say. But B gets it from us, it's something Andrew says jokingly. (He now will stop saying it). "Gonna eat da, baby!" about a friend's kid that he watches. I used to say it to B all the time, along with chasing B around going, "I'm going to nummy your tummy/ribs/bum!" as she ran around giggling and laughing. Really, is that so incredibly odd? The numming never happens, just the chasing and silliness.
But it upset me that they phoned someone about it. It isn't something she should say at school, but I would've thought addressing that with her and then telling me about it would suffice. Also, I didn't like that they told me in front of B, remembering that her anxiety started with a teacher who would list all her mostly minor complaints about B in front of her. It isn't good for B.
I brought B home after school, but then realised that I needed to address it right away, so I parked her with Andrew, who had a movie going, and went back to the school. First, I got all the workers and her teacher together and had a talk with them about:
a) B is weird. She says weird things. She's weird because Andrew and I are weird. We're weird people. In our house, weirdness is a virtue, and if they phoned mental health every time B said something weird, well, they might as well move the class there.
b) B says inappropriate things, all the time, because she doesn't understand social situations. I definitely expect them to tell her when she says something inappropriate, but do they phone when any other kid says something weird?
c) The answer is yes, they do. News to me.
d) That no matter their good intentions or policy, and I accept that they did have good intentions, it doesn't feel good to hear, "We called the _______ about your child today," it felt nerve wracking and I felt unsettled about it.
e) Let's set up a better system. A new counsellor will take over B's case soon, because the old counsellor moved to Newfoundland in August. When he gets set up, I will ensure the school has access, so keep a log instead. Because I don't want to worry every day that the school might phone the mental health unit about my weird kid.
f) Since her birth, she has seen doctors, speech/occupational/physio therapists, psychiatrists, specialists, psychologists, and for the last year and a half has had regular therapy appointments, by herself, with confidentiality even from me. If she had any violent or aggressive tendencies or had experienced any abuse from me or anyone else, this would have already become apparent to somebody. There exists no secrets about my parenting of B, she has had more investigative intervention than any kid I know.
g) Did I mention she is weird? Because I'm weird? I don't want to "normal" her. I adore her odd sense of humour. It matches mine.
I think they listened to me and they agreed to my suggestions, and then I went and told the vice-principal. The vp said she had them report it to ensure B got services because she had worried that B didn't have them now and had been put on a wait list. So I explained that no, the old therapist had just moved. B will still have therapy.
Anyways, hopefully I've altered the situation so that I don't have to worry and they feel they can address concerns with me and the counsellor, and that I don't ever have to experience that again. I might add more later.
Today I went to pick B up from school, and one of the class aides said that B had said something weird at school, so they phoned her Mental Health office and reported it. She said none of the people felt angry about it, and they had just followed the direction of the vice-principal about it. They understood that B had just been joking around and that they knew B does not have violence issues, so I should not consider it a big deal. The thing that B said, jokingly to her pregnant teacher, was:
"Why don't you go home and eat your baby?"
Admittedly, it's a weird thing to say. But B gets it from us, it's something Andrew says jokingly. (He now will stop saying it). "Gonna eat da, baby!" about a friend's kid that he watches. I used to say it to B all the time, along with chasing B around going, "I'm going to nummy your tummy/ribs/bum!" as she ran around giggling and laughing. Really, is that so incredibly odd? The numming never happens, just the chasing and silliness.
But it upset me that they phoned someone about it. It isn't something she should say at school, but I would've thought addressing that with her and then telling me about it would suffice. Also, I didn't like that they told me in front of B, remembering that her anxiety started with a teacher who would list all her mostly minor complaints about B in front of her. It isn't good for B.
I brought B home after school, but then realised that I needed to address it right away, so I parked her with Andrew, who had a movie going, and went back to the school. First, I got all the workers and her teacher together and had a talk with them about:
a) B is weird. She says weird things. She's weird because Andrew and I are weird. We're weird people. In our house, weirdness is a virtue, and if they phoned mental health every time B said something weird, well, they might as well move the class there.
b) B says inappropriate things, all the time, because she doesn't understand social situations. I definitely expect them to tell her when she says something inappropriate, but do they phone when any other kid says something weird?
c) The answer is yes, they do. News to me.
d) That no matter their good intentions or policy, and I accept that they did have good intentions, it doesn't feel good to hear, "We called the _______ about your child today," it felt nerve wracking and I felt unsettled about it.
e) Let's set up a better system. A new counsellor will take over B's case soon, because the old counsellor moved to Newfoundland in August. When he gets set up, I will ensure the school has access, so keep a log instead. Because I don't want to worry every day that the school might phone the mental health unit about my weird kid.
f) Since her birth, she has seen doctors, speech/occupational/physio therapists, psychiatrists, specialists, psychologists, and for the last year and a half has had regular therapy appointments, by herself, with confidentiality even from me. If she had any violent or aggressive tendencies or had experienced any abuse from me or anyone else, this would have already become apparent to somebody. There exists no secrets about my parenting of B, she has had more investigative intervention than any kid I know.
g) Did I mention she is weird? Because I'm weird? I don't want to "normal" her. I adore her odd sense of humour. It matches mine.
I think they listened to me and they agreed to my suggestions, and then I went and told the vice-principal. The vp said she had them report it to ensure B got services because she had worried that B didn't have them now and had been put on a wait list. So I explained that no, the old therapist had just moved. B will still have therapy.
Anyways, hopefully I've altered the situation so that I don't have to worry and they feel they can address concerns with me and the counsellor, and that I don't ever have to experience that again. I might add more later.
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.
Monday, September 13, 2010
New School Year
Well, B has started grade seven. Her teacher is quite pregnant, which delights B to no end. Yesterday she took a biology book to school to explain how pregnancy works to the teacher. I think that was very helpful. The teacher may not know.
Last Thursday I picked her up at lunch to take her to the Centre for Ability to apply for supported daycare. We will go on a waiting list, and it will take awhile to get it. What type we'll get, we don't know. But she can't attend after school care without it. This is one of the many extra steps parents of special needs kids must go through.
When she first started daycare it was very hard to find one to accept her. Most places and people I talked to expressed discomfort about taking a child with seizures. And, while I can force places to take her (I have before), I don't really want to send her to any place that is uncomfortable with accepting her.
I did eventually find a terrific daycare for her that she loved. But later, when she entered school, I found it difficult to put her in after school care even though the school had two such options on site. The YMCA had an after school program and I signed her up, but on the first day they told me they wouldn't accept her without supported daycare. I had to scramble for two weeks to cover the afternoons so that I could attend class, go through the long application process, and then I literally had to force her in before the support showed up because I needed some place to take her in the afternoons.
She was in the after school care for the rest of the year, and no support worker ever came.
A year later I tried to put her in a program at the school for children of single moms who needed extra socialising and homework time, and they wouldn't take her. Because her seizures made her "a liability". I went to her doctors and got notes saying she could attend, but the notes weren't good enough. After some time, I managed to get an appointment with the VSB, we ironed out the details, and I was sent back to her doctors with an exhaustive and detailed list of activities that I had to get them to okay. It took a lot of time, these are all specialists that we can wait months to see.
Finally, I had all my i's dotted and my t's crossed.
And the school year ended and we moved. All that extra stress, on top of school work and B's health needs, and she never got in. I shouldn't be too surprised. When she started school I had to sit outside her class room, all day, every day for two weeks, or they wouldn't let her go. In a school of 600 students they had not one person trained to deal with seizures.
Over a year ago I signed her up for the YWCA Big Sisters program and got a phone call from them saying she'd never match, that no Big Sister would take on a child like B. This seemed to be contrary to the information I got from friends already enrolled in the program. They said that it was one of the screening questions, and most Big Sisters agree to take on disabled girls.
I was disheartened. But then a lovely friend stepped forward to do it, and we enrolled them in the program together. And now I have to talk to people at the Big Sisters program once in awhile and act like they did the match. I am rolling my eyes as I type that.
The point I am making, not to belabour it too much, is that to do the things that most parents do with their kids takes us considerably more time and energy, and often that energy does not pay off. If you think that most places that should be inclusive are inclusive, you are wrong. All sorts of sports and recreation programs and old standbys like Brownies and Girl Guides? All out. Unless I decide to attend every one of them with her, and then what is the point? The point is to foster independence. That does not happen if I am there.
So, just to warn you, if you ever say to me, "Hey, why don't you sign B up for X, Y, or Z!" You will get SUCH a look.
Last Thursday I picked her up at lunch to take her to the Centre for Ability to apply for supported daycare. We will go on a waiting list, and it will take awhile to get it. What type we'll get, we don't know. But she can't attend after school care without it. This is one of the many extra steps parents of special needs kids must go through.
When she first started daycare it was very hard to find one to accept her. Most places and people I talked to expressed discomfort about taking a child with seizures. And, while I can force places to take her (I have before), I don't really want to send her to any place that is uncomfortable with accepting her.
I did eventually find a terrific daycare for her that she loved. But later, when she entered school, I found it difficult to put her in after school care even though the school had two such options on site. The YMCA had an after school program and I signed her up, but on the first day they told me they wouldn't accept her without supported daycare. I had to scramble for two weeks to cover the afternoons so that I could attend class, go through the long application process, and then I literally had to force her in before the support showed up because I needed some place to take her in the afternoons.
She was in the after school care for the rest of the year, and no support worker ever came.
A year later I tried to put her in a program at the school for children of single moms who needed extra socialising and homework time, and they wouldn't take her. Because her seizures made her "a liability". I went to her doctors and got notes saying she could attend, but the notes weren't good enough. After some time, I managed to get an appointment with the VSB, we ironed out the details, and I was sent back to her doctors with an exhaustive and detailed list of activities that I had to get them to okay. It took a lot of time, these are all specialists that we can wait months to see.
Finally, I had all my i's dotted and my t's crossed.
And the school year ended and we moved. All that extra stress, on top of school work and B's health needs, and she never got in. I shouldn't be too surprised. When she started school I had to sit outside her class room, all day, every day for two weeks, or they wouldn't let her go. In a school of 600 students they had not one person trained to deal with seizures.
Over a year ago I signed her up for the YWCA Big Sisters program and got a phone call from them saying she'd never match, that no Big Sister would take on a child like B. This seemed to be contrary to the information I got from friends already enrolled in the program. They said that it was one of the screening questions, and most Big Sisters agree to take on disabled girls.
I was disheartened. But then a lovely friend stepped forward to do it, and we enrolled them in the program together. And now I have to talk to people at the Big Sisters program once in awhile and act like they did the match. I am rolling my eyes as I type that.
The point I am making, not to belabour it too much, is that to do the things that most parents do with their kids takes us considerably more time and energy, and often that energy does not pay off. If you think that most places that should be inclusive are inclusive, you are wrong. All sorts of sports and recreation programs and old standbys like Brownies and Girl Guides? All out. Unless I decide to attend every one of them with her, and then what is the point? The point is to foster independence. That does not happen if I am there.
So, just to warn you, if you ever say to me, "Hey, why don't you sign B up for X, Y, or Z!" You will get SUCH a look.
Monday, September 6, 2010
My Fears
It likely won't surprise you that in my dark hours I have many fears about B. About her safety, about her future, about her growing up and achieving some sort of self-sufficiency and having, always, some people to care for her and watch over her. Sometimes I wake up in a panic, feeling that I'm not doing enough to prepare her to be on her own, that I am failing to provide financially for whatever care or support she might need after I am dead. Most parents likely have some fears about this, as most of us learn that even careful planning cannot prepare us for a treacherous and uncertain life. But most parents are raising children who will grow up, get jobs, go to college and create their own life extraneous to their parents' lives. And, honestly, I think B might not ever have those things.
Don't get me wrong, I want those things for her, and I am certainly going to work with the intention that she will, I just accept that that may not be the case, and that my child has a real possibility of needing other preparations made. And sometimes that gets me down. Often even simple things, things other people take for granted, can cause me overwhelming anxiety when I try to imagine B doing them.
A case in point: We've been working with a nice and very thorough public health nurse to get B some supports that she has been lacking. Even though we've been in contact with the Health authority before, for some reason none of the other nurses offered any of the help that this nurse has provided. She even felt some surprise about that and is not sure why her office hasn't been more involved. She apologised to us for it.
For our part, we've had contact with them since B was born, and several times since she's been in school, and none had ever mentioned any of the things that this nurse has. The system is slippery, and even demanding and boisterous people like myself can apparently fall through the cracks.
This nurse and I were talking on the phone awhile ago and, quite off the cuff, she said that she thought that B could soon take the bus by herself. I was immediately filled with panic at the mere suggestion of it. "But what about her seizures?" I protested. The nurse said there was another young boy. older than B, that she had worked with, who had seizures and his parents just pinned a note to his jacket in case he had one.
I cannot convey adequately the horror that brings to my heart. I don't know this boy, or what kind of seizures he has, but I do know that even B's workers at school, who experience B's seizures frequently and have been trained to deal with them, often cannot tell she's having them even if they are looking right at her. Perhaps that boy has tonic clonic ones only, the jerking kind that cause him to drop and move in a way that most people will recognise as seizures, but B may not register anything but a blank stare, or she might just moan a bit and make some strange movements. The ones she has while standing or walking do not make her fall and jerk, in fact she will just keep walking but be completely unaware of what she is doing. This means the very real possibility of missing her stop or walking into traffic anytime she is outside. How big of a note will I need to let the crazy people who drive a hundred miles an hour down Hastings St. what her seizures look like in case she suddenly walks into the road? And this does not even address the long recovery time she needs after a seizure, during which time she is completely incapacitated and extremely vulnerable. It scares the living shit out of me to think of her being by herself when that happens.
But okay, lets say her seizures are suddenly controlled and she doesn't have one for a year. We still have a child that when you say, "Honey, pass me that huge jar of glowing red and green lights from the table you are standing right next to," will run into the kitchen or the bathroom, because she has damage to the areas of the brain that deal with spatial processing. Getting her to pass you something that she's standing next to, or sitting next to takes explicit and detailed instructions, "Turn around, look at the shelf, now look at the shelf below that one, now see the green thing, now pick it up." This is a child who, when you say, "Let's go to the gas station," will run out the gate and turn the wrong way even though she's been there a million times, and you can see it, it's right there.
So, write her a note, you say. But she's not going to remember she has a note. Even if it's a huge flashing note that I've hung around her neck.
After the nurse told me about the boy, and I experienced my moment of blustery terror, I collected myself and said, "I don't mean to sound so negative, but that is so very, very far from where we are right now, that I can't even imagine that ever happening."
Since then I've thought about that. I guess I'm a little surprised that she read all of B's reports, talked to me extensively about B's issues, and still made that suggestion. But then I thought, "But see, she has that problem that so many do. She's met B, and B does NOT look so impaired, and I have so long dealt with these issues that I just naturally and unobtrusively compensate for B's challenges, that the nurse has added 2 and 2 and come up with 167."
I can't imagine sending B off on the bus. I can't imagine sending her out back with the garbage.
So, if her seizures become controlled, really controlled, and she can at least find the table, and she develops a memory that holds things for longer than two minutes, then and only then, will I consider sticking a note on her and sending her off alone
Wednesday, September 1, 2010
How B Developed Anxiety
B did not always have anxiety. As a matter of fact, she was pretty go with the flow as a baby. Without formally deciding to when she was born, I just naturally practiced what is generally called attachment parenting. I picked B up every time she cried. I carried her next to my skin. We did, and still do, sleep naked together, ensuring tons of skin on skin contact. I breastfed on demand, anywhere, and cannot tell you the number of appointments I went through with her as a baby with one boob having been popped out of my shirt, and me completely not noticing because it is how I spent most of my time. I certainly was not a perfect mom, I had and have many faults, but these things I did right, as did most of the moms I had and have as friends.
When B was 2.5 I put her in daycare. She was enthusiastic, and had no separation anxiety at all. (She also toilet trained immediately upon entering daycare with no prompting, although I came to realise that this probably happened so that she could gain the freedom to pee on trees. That was a real problem for a while, keeping her from squatting on every block.) She loved daycare, and was so very excited to start school that even though I could've held her back another year, her birthday being December 31st, I just didn't have the heart to.
The anxiety didn't start until grade three. In grade three she had a teacher that got it into her head that she could punish the forgetfulness and ADD out of B. She and B's aide would put B out in the hallway for not doing homework or listening. Also, when I came at the end of every school day, the aide or the teacher would have a laundry list of very minor complaints about her behaviour that they would launch into, in front of B. B would sit there and feel absolute shame, even though many of the complaints were about things out of her control or were minor things that kids do, that the other kids did, only B's mom came in every day, so she got to hear them.
Now, it must be clarified that B is not, and never has been, a discipline problem. She is not rambunctious, she isn't disruptive. Her problems were about being able to focus and withdrawing into her own world, not about being in any way aggressive or petulant or rude. She can't follow directions because she can't remember them, because she can't negotiate the classroom, because she didn't hear them, because she is unable to ask for help, etc..
All these are reasons why discipline does not work for B. Sure, I can send her to her room, but if she doesn't remember why she's in there, what is the discipline worth? And if the problems are caused by an organic brain injury, that she cannot control, is strictness and shaming going to somehow change her memory and attention problems?
No.
At first, to my regret, I allowed this teacher this leeway, mistakenly assuming that she had some experience that I lacked. It was the biggest mistake ever. Within a few weeks, B had developed massive anxiety about going to school. She was angry. And who could blame her? She started hitting me, screaming, slamming doors, and even hit her aide at school, which the aide and the teacher thought was somehow good and demonstrated trust! To me now, this seems so completely unbelievable.
I forced them to stop, stop disciplining her, stop shaming her. I talked with the resource teacher, the principal, the social worker. And they did stop, although my relationship with the teacher became very strained. I increased my presence at the school, and B calmed down, but the anxiety remained. She doesn't remember any of it, but the anxiety remained.
At the end of the school year that year, an EEG showed that B was having sub clinical seizure discharges at the rate of one per second. I was devastated. One per second. That means B's reality is something like sitting and flicking through the channels constantly on your TV. There is no continuity. So many times a day her channel is changed and she has no idea what is happening on the show. And I allowed that teacher to make her feel bad about that. How horrible for her.
When B was 2.5 I put her in daycare. She was enthusiastic, and had no separation anxiety at all. (She also toilet trained immediately upon entering daycare with no prompting, although I came to realise that this probably happened so that she could gain the freedom to pee on trees. That was a real problem for a while, keeping her from squatting on every block.) She loved daycare, and was so very excited to start school that even though I could've held her back another year, her birthday being December 31st, I just didn't have the heart to.
The anxiety didn't start until grade three. In grade three she had a teacher that got it into her head that she could punish the forgetfulness and ADD out of B. She and B's aide would put B out in the hallway for not doing homework or listening. Also, when I came at the end of every school day, the aide or the teacher would have a laundry list of very minor complaints about her behaviour that they would launch into, in front of B. B would sit there and feel absolute shame, even though many of the complaints were about things out of her control or were minor things that kids do, that the other kids did, only B's mom came in every day, so she got to hear them.
Now, it must be clarified that B is not, and never has been, a discipline problem. She is not rambunctious, she isn't disruptive. Her problems were about being able to focus and withdrawing into her own world, not about being in any way aggressive or petulant or rude. She can't follow directions because she can't remember them, because she can't negotiate the classroom, because she didn't hear them, because she is unable to ask for help, etc..
All these are reasons why discipline does not work for B. Sure, I can send her to her room, but if she doesn't remember why she's in there, what is the discipline worth? And if the problems are caused by an organic brain injury, that she cannot control, is strictness and shaming going to somehow change her memory and attention problems?
No.
At first, to my regret, I allowed this teacher this leeway, mistakenly assuming that she had some experience that I lacked. It was the biggest mistake ever. Within a few weeks, B had developed massive anxiety about going to school. She was angry. And who could blame her? She started hitting me, screaming, slamming doors, and even hit her aide at school, which the aide and the teacher thought was somehow good and demonstrated trust! To me now, this seems so completely unbelievable.
I forced them to stop, stop disciplining her, stop shaming her. I talked with the resource teacher, the principal, the social worker. And they did stop, although my relationship with the teacher became very strained. I increased my presence at the school, and B calmed down, but the anxiety remained. She doesn't remember any of it, but the anxiety remained.
At the end of the school year that year, an EEG showed that B was having sub clinical seizure discharges at the rate of one per second. I was devastated. One per second. That means B's reality is something like sitting and flicking through the channels constantly on your TV. There is no continuity. So many times a day her channel is changed and she has no idea what is happening on the show. And I allowed that teacher to make her feel bad about that. How horrible for her.
Sunday, August 29, 2010
The Happiness
I suppose that when reading about parenting B it is easy to feel overwhelmed by the large scope of her disabilities. It is quite a lot, with the doctors and the meds and the difficulty we face in accomplishing even day to day things. For instance, most twelve year olds have been doing things like washing and dressing themselves for quite awhile, and B doesn't do those things without direct supervision and considerable help. Largely, that's a memory issue. You can't say to her, "Go get your clothes and put them on," because most of the time she can't find the room she needs to be in, doesn't remember what she was supposed to get when she gets there, and needs constant prompts to do what she needs to do even when everything has been arranged and provided. That's just our life.
Every single day, no matter what is happening, I feel overwhelming joy in being her mother, and I am always keenly aware that she is really doing remarkably well. The area of injury to her brain is very substantial, over half of the right side of her brain. It is not exaggeration to say that if you or I suffered such a loss we would be suffering a much greater loss of function with truly significant impairment. Babies have an advantage, they have a clean slate of a brain, whereas we, as adults, have mapped our neural pathways. It is much harder to remap those pathways than it is to map them the first time, even if you need to map around a large injury. So babies can fair better after having a stroke than adults.
But not always. B's pediatrician told me that he has patients with smaller injuries that are worse off, and ones with larger ones, like B, that do better. There is no way of predicting what the outcome will be, and I have always felt, although he has never said outright, that B is doing way better than anticipated given the size of her injury. This is due, I suspect, to the fact that her injury is from roughly the middle of her brain to the back. If it was at the front, where the higher cognitive skills are, I think she would be more delayed.
There are areas that are just gone, and no amount of mapping around them will replace them. The occipital lobe is at the back of the brain, and she will never have full vision in her left eye (the right side of the brain controls the left side of your body and vice verse). Also, the areas that process sensory and motor control, which affect spatial reasoning, well, their injuries will be permanent. While I expect we will always TRY to help her develop these areas, I also accept that adaptations must be made. I have become really good at letting go of expectations.
So, all things considered, I absolutely know on a daily basis just how lucky I am. She lived through a terrible health crisis when she was born, grew and hit milestones when she was a baby. Perhaps later than most, but she hit them. And she continues to grow everyday, developing insight, and knowledge, and a really keen sense of humour. And I am thankful to her, because being her parent has been an extraordinary challenge, one that has made me grow up, become kinder, and learn when and how to let go of expectations.
And none of that means that I don't experience stress from having so much to deal with, or sadness at realising the space that has grown between her and my friends' children as they pass her by in development. It just means that it is absolutely worth it.
Every single day, no matter what is happening, I feel overwhelming joy in being her mother, and I am always keenly aware that she is really doing remarkably well. The area of injury to her brain is very substantial, over half of the right side of her brain. It is not exaggeration to say that if you or I suffered such a loss we would be suffering a much greater loss of function with truly significant impairment. Babies have an advantage, they have a clean slate of a brain, whereas we, as adults, have mapped our neural pathways. It is much harder to remap those pathways than it is to map them the first time, even if you need to map around a large injury. So babies can fair better after having a stroke than adults.
But not always. B's pediatrician told me that he has patients with smaller injuries that are worse off, and ones with larger ones, like B, that do better. There is no way of predicting what the outcome will be, and I have always felt, although he has never said outright, that B is doing way better than anticipated given the size of her injury. This is due, I suspect, to the fact that her injury is from roughly the middle of her brain to the back. If it was at the front, where the higher cognitive skills are, I think she would be more delayed.
There are areas that are just gone, and no amount of mapping around them will replace them. The occipital lobe is at the back of the brain, and she will never have full vision in her left eye (the right side of the brain controls the left side of your body and vice verse). Also, the areas that process sensory and motor control, which affect spatial reasoning, well, their injuries will be permanent. While I expect we will always TRY to help her develop these areas, I also accept that adaptations must be made. I have become really good at letting go of expectations.
So, all things considered, I absolutely know on a daily basis just how lucky I am. She lived through a terrible health crisis when she was born, grew and hit milestones when she was a baby. Perhaps later than most, but she hit them. And she continues to grow everyday, developing insight, and knowledge, and a really keen sense of humour. And I am thankful to her, because being her parent has been an extraordinary challenge, one that has made me grow up, become kinder, and learn when and how to let go of expectations.
And none of that means that I don't experience stress from having so much to deal with, or sadness at realising the space that has grown between her and my friends' children as they pass her by in development. It just means that it is absolutely worth it.
Friday, August 27, 2010
Not Very Sneaky
Because B has memory problems and is emotionally younger than she is chronologically (emotionally she's 6 or 7, but she'll be 12 in 3 months), she has a very limited capacity for being sneaky or lying. I know that these things are viewed as anti-social, but really they are a part of normal development being as they represent an understanding of self-interest and self-preservation. Children lie, usually about small things, to avoid consequences and while it is our job to correct this behaviour, I consider it normal that they do it. I guess that, until you have a child that doesn't hit such milestones, you don't rejoice as I did the one or two times she has actually lied to me or been sneaky. Sure, outwardly I was all proper motherly chastisement, but inside I was thrilled that she actually had the forward thinking ability to lie to avoid getting in trouble. Parenting her is weird like that.
But B usually does not do it, and not because she is morally superior, but simply because she doesn't remember doing something, doesn't remember she isn't supposed to do something, or because, due to anxiety, she feels compelled to tell me what happened.
A while ago, Andrew bought her some great new bath toys and so I replaced her old ones with them. If I had done it when she wasn't looking, I know that she would not have noticed, or not until a very long time had passed. However, she came in while I was doing it and saw the old toys in the bathroom wastebasket and became very upset. It took quite a bit of discussion to get her to understand that there were new better toys and it was okay to let go of the old ones. She was talked into begrudgingly accepting this change, and I thought she would come around, or more likely just forget about it.
Sometime later I was going through her closet when I found a box with a post it stuck on it that said, "Do Not Sneak In Box". It had all the bath toys I had I thrown out in it, including the empty Spongebob Squarepants bubble bath container (in my defense, the box didn't have a lid so I wasn't really sneaking). I doubt that she thought, "I'll come back later and hide these precious things," more likely she just saw them later and took them. But I was impressed that she hid them and even made a note. That is a fair bit of planning on her part.
On Monday I bought some Nutella. Just a little jar, because it was my birthday. I gave her some and then left the jar where she was sitting. She wanted more, but I told her she'd get more later. I left the room for awhile, and when I came back, she was sitting in an awkward way on the couch, with her knees up and a blanket partially concealing her face. Her huge blue eyes were peeking out at me.
"B, what are you doing?"
"Nothing!" she said, and the blanket fell, and I saw that she had a fine coating of Nutella around her mouth and onto her chin.
"Honey, are you sure you're doing nothing?"
"Yes," she hid the jar under the blanket.
"Because Mommy is pretty sure that you're sneaking Nutella. Want to know how I know?"
"How?"
"Because the jar, that was sitting right there, is missing, and you have a Nutella goatee."
She looked very guilty and dropped the blanket, but I was too amused at her to be angry. I started laughing, and she started laughing, and then she jumped up and shouted, "You should take a picture and send it to everyone we know!"
So I did.
The little monkey ate the whole jar, too.
But B usually does not do it, and not because she is morally superior, but simply because she doesn't remember doing something, doesn't remember she isn't supposed to do something, or because, due to anxiety, she feels compelled to tell me what happened.
A while ago, Andrew bought her some great new bath toys and so I replaced her old ones with them. If I had done it when she wasn't looking, I know that she would not have noticed, or not until a very long time had passed. However, she came in while I was doing it and saw the old toys in the bathroom wastebasket and became very upset. It took quite a bit of discussion to get her to understand that there were new better toys and it was okay to let go of the old ones. She was talked into begrudgingly accepting this change, and I thought she would come around, or more likely just forget about it.
Sometime later I was going through her closet when I found a box with a post it stuck on it that said, "Do Not Sneak In Box". It had all the bath toys I had I thrown out in it, including the empty Spongebob Squarepants bubble bath container (in my defense, the box didn't have a lid so I wasn't really sneaking). I doubt that she thought, "I'll come back later and hide these precious things," more likely she just saw them later and took them. But I was impressed that she hid them and even made a note. That is a fair bit of planning on her part.
On Monday I bought some Nutella. Just a little jar, because it was my birthday. I gave her some and then left the jar where she was sitting. She wanted more, but I told her she'd get more later. I left the room for awhile, and when I came back, she was sitting in an awkward way on the couch, with her knees up and a blanket partially concealing her face. Her huge blue eyes were peeking out at me.
"B, what are you doing?"
"Nothing!" she said, and the blanket fell, and I saw that she had a fine coating of Nutella around her mouth and onto her chin.
"Honey, are you sure you're doing nothing?"
"Yes," she hid the jar under the blanket.
"Because Mommy is pretty sure that you're sneaking Nutella. Want to know how I know?"
"How?"
"Because the jar, that was sitting right there, is missing, and you have a Nutella goatee."
She looked very guilty and dropped the blanket, but I was too amused at her to be angry. I started laughing, and she started laughing, and then she jumped up and shouted, "You should take a picture and send it to everyone we know!"
So I did.
The little monkey ate the whole jar, too.
Tuesday, August 24, 2010
(Lack Of) Services
Yesterday I received an e-mail from my daughter's therapist about a program we we were trying to get B into. It is a program to help children and parents learn skills for dealing with anxiety. This is part of the letter our therapist sent me:
"N isn't sure if this group would be helpful for B. She says it is very fast paced and not designed for kids with a complex developmental history. It is usually run by medical and/or psychology students under supervision who would not have any real experience with children like B. But she says you can call her and discuss B's needs more fully and see what you think."
Here we we have a problem that I run into all the time. Services have restrictions for eligibility. On the surface, that seems logical. A service must specify who they serve so that people get appropriate services, after all, for funding, to avoid duplication of services, so that the right people go to the right programs. The problem is that kids like B have complex diagnoses and they fail the eligibility criteria of programs not because they don't meet the criteria, but because they exceed the criteria.
It happens all the time. To the point that my daughter currently only receives therapy for her anxiety. That's it, and it took a very long time to get that.
Before she started school, she received very good services, through the Infant Development Program and the Centre for Ability. Speech therapy, occupational therapy, physiotherapy were all provided. When children become school aged, they no longer receive those services because the school board is supposed to step in, but their services are stretched so very thin that my daughter has not seen a speech or occupational therapist in eight years, other than diagnostic ones during assessments.Assessments we have. I have assessments on her through the nose. Turning those assessments into action that is where the system is failing.
Can you imagine what it is like for those who don't have a diagnosis since birth? There are many students in the school system, right now, with no diagnosis and no assessments. I think about that a lot, I am very lucky that B was diagnosed with a stroke at birth, because not all kids who have a stroke are diagnosed with it. It isn't something that doctors look for at birth, and it is something that only time reveals as a possibitlity.
Can you imagine what it is like for those who don't have a diagnosis since birth? There are many students in the school system, right now, with no diagnosis and no assessments. I think about that a lot, I am very lucky that B was diagnosed with a stroke at birth, because not all kids who have a stroke are diagnosed with it. It isn't something that doctors look for at birth, and it is something that only time reveals as a possibitlity.
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.
Thursday, August 12, 2010
B's Doctors and Meds
B has many doctors and other specialists. Currently she has a neurologist, a pediatrician, a GP, a ear nose and throat specialist, a sleep specialist, a pshychiatrist, a therapist, a public health nurse, and in September she will see a special pediatric gynecologist. These are all the people who are currently actively involved in treating her various health concerns.
As you might imagine, it's a bit exhausting for both of us. This is certainly not a comprehensive list of everyone who has been involved with her, nor does it include the therapists I hope she will see soon, nor all the people at school that are involved in her care and education. Education will get its own posts.
Today we saw her pediatrician, the doctor who has been with us the longest. He was the first doctor she had, as he was in the room when she was born, and we both like him very much. It is very important to get doctors and other specialists that we feel very confident in, because so many of the treatments B gets are trial and error. When you are dealing with brain injuries there seem to be no clearcut answers, the brain is very complex. Healthy brains are complex enough, and an injured brain, well, that is an area where you tread lightly with those trained in treating an injured brain as your stick.
Unfortunately, B's seizure meds don't seem to be working very well. When she was born she was on Phenobarbital, but only briefly, and when she came home from the hospital she wasn't on anything for the first couple of years as she seemed seizure free. When she was about two, she started having Tonic Clonic seizures, so she was started on Clobozam and I was trained to administer Diazepem per rectum for long seizures. She seemed seizure free at about five years old so she came off the Clobozam. When she was seven she started to have Absence episodes. It took me quite a long time to figure out these weren't just attention issues. She was was put back on the Cobozam, but this time the results were horrible. She did not sleep for more than a couple of hours at a time for over a month, which left me a crying mess. She was then put on Lamotrigine. This worked for awhile but then, despite ever increasing dosages, slowly stopped working. Last winter it was decided to add Epival to the Lamotrigine. The Lamotrigine dose was brought down, and the Epival added. For the last month and a half she has been on 100mg Lamotrigine twice a day, and 500mg Epival twice a day, and she is still having several seizures a week. The seizures she is having now are Complex Partials. Last Sunday she had two and slept for most of the day.
So, now we will look at changing her meds yet again. It is a daunting process, as each old med must be carefully and methdically lowered and only when she is off can the new meds be slowly and methodically introduced. It takes a long time to even get them to therapeutic levels, let alone to see if they work, and then adjust them and give them time to stabilise.
Every medication change involves having EEGs done. B has an EEG about every six months. She is such an odd duck that she LOVES having EEGS. Not so much for the actual examination, but because I learned when she was just wee that the child will absolutely not sleep for them, which is ideal, if she has had even a couple of hours of sleep the night before. So I have to keep her up the whole night and then, hopefully, she will sleep. Even then, it's not guaranteed she will sleep. I have kept her up all night and had them give her a mild sedative and still she has not slept. But she loves staying up all night. A couple of times a month she will come to me, hope in her eyes, and ask, "Do I have an EEG tomorrow? I forget," and I will say, "No, honey, you have to go to bed tonight," and she is disappointed.
I'm not. I like sleeping.
As you might imagine, it's a bit exhausting for both of us. This is certainly not a comprehensive list of everyone who has been involved with her, nor does it include the therapists I hope she will see soon, nor all the people at school that are involved in her care and education. Education will get its own posts.
Today we saw her pediatrician, the doctor who has been with us the longest. He was the first doctor she had, as he was in the room when she was born, and we both like him very much. It is very important to get doctors and other specialists that we feel very confident in, because so many of the treatments B gets are trial and error. When you are dealing with brain injuries there seem to be no clearcut answers, the brain is very complex. Healthy brains are complex enough, and an injured brain, well, that is an area where you tread lightly with those trained in treating an injured brain as your stick.
Unfortunately, B's seizure meds don't seem to be working very well. When she was born she was on Phenobarbital, but only briefly, and when she came home from the hospital she wasn't on anything for the first couple of years as she seemed seizure free. When she was about two, she started having Tonic Clonic seizures, so she was started on Clobozam and I was trained to administer Diazepem per rectum for long seizures. She seemed seizure free at about five years old so she came off the Clobozam. When she was seven she started to have Absence episodes. It took me quite a long time to figure out these weren't just attention issues. She was was put back on the Cobozam, but this time the results were horrible. She did not sleep for more than a couple of hours at a time for over a month, which left me a crying mess. She was then put on Lamotrigine. This worked for awhile but then, despite ever increasing dosages, slowly stopped working. Last winter it was decided to add Epival to the Lamotrigine. The Lamotrigine dose was brought down, and the Epival added. For the last month and a half she has been on 100mg Lamotrigine twice a day, and 500mg Epival twice a day, and she is still having several seizures a week. The seizures she is having now are Complex Partials. Last Sunday she had two and slept for most of the day.
So, now we will look at changing her meds yet again. It is a daunting process, as each old med must be carefully and methdically lowered and only when she is off can the new meds be slowly and methodically introduced. It takes a long time to even get them to therapeutic levels, let alone to see if they work, and then adjust them and give them time to stabilise.
Every medication change involves having EEGs done. B has an EEG about every six months. She is such an odd duck that she LOVES having EEGS. Not so much for the actual examination, but because I learned when she was just wee that the child will absolutely not sleep for them, which is ideal, if she has had even a couple of hours of sleep the night before. So I have to keep her up the whole night and then, hopefully, she will sleep. Even then, it's not guaranteed she will sleep. I have kept her up all night and had them give her a mild sedative and still she has not slept. But she loves staying up all night. A couple of times a month she will come to me, hope in her eyes, and ask, "Do I have an EEG tomorrow? I forget," and I will say, "No, honey, you have to go to bed tonight," and she is disappointed.
I'm not. I like sleeping.
Tuesday, August 10, 2010
Introducing B
No, I did not just misspell "be" in the title. B is what we call my daughter. She is 11 years old and is the point around which this blog shall focus.
If you met my daughter, you would think her to be very sweet, regular child, perhaps a bit young for her age. There is no fault there, that is what she seems like, and even people who come to know her often fall prone to forgetting that she is a sweet and irregular child (I say this with love, I am an irregular Mom). You cannot see her disabilities. She is not in a wheelchair, she does not use a cane, she is not missing an appendage. Like millions of other children and adults, her disabilities are invisible, and although to her and I the disability is as real and palpable as a wheelchair, I have grown to accept, if not appreciate, that others can't see it.
My daughter had a stroke about four hours before birth. Infant stroke is a rare occurrence, however, it happens more than you are likely aware of, about 2.4 out of 100,000 children a year suffer from a stroke.
The causes are not always identifiable, but in B's case it is thought that a blood clot that formed in a vein near her liver is the culprit, and that a piece of that broke off and travelled to her brain. Why she developed this clot is not clear, as neither of us has a clotting disorder. She did, and now that is all that matters, because it cannot be undone.
The result is a large area of brain damage, in the right occipital lobe and surrounding areas. Here is a complete listing of the resulting conditions: severe and poorly controlled epilepsy, anxiety, impaired gross and fine motor skills, cognitive delay, missing sight and hearing on the left side, ADD, symptoms similar to Non Verbal Learning disability, sleep disorder, and a younger emotional age.
I will make an entry about each of these, or else this post will become a novel. Before I end this post, I want to list her strengths: she is strongly empathetic, has a wonderful sense of humour, and she reads voraciously. She started reading at two, when she could name her alphabet randomly from magnets on the fridge. She still spends hours playing with the letters on the fridge. As a result she has an amazing and appealing vocabulary.
My hope is that this blog will help educate people about children like my daughter, can be a way that I share all that I have learned with others, and that others will share what they have learned with me. I hope to do this with humour and compassion. Please join us.
If you met my daughter, you would think her to be very sweet, regular child, perhaps a bit young for her age. There is no fault there, that is what she seems like, and even people who come to know her often fall prone to forgetting that she is a sweet and irregular child (I say this with love, I am an irregular Mom). You cannot see her disabilities. She is not in a wheelchair, she does not use a cane, she is not missing an appendage. Like millions of other children and adults, her disabilities are invisible, and although to her and I the disability is as real and palpable as a wheelchair, I have grown to accept, if not appreciate, that others can't see it.
My daughter had a stroke about four hours before birth. Infant stroke is a rare occurrence, however, it happens more than you are likely aware of, about 2.4 out of 100,000 children a year suffer from a stroke.
The causes are not always identifiable, but in B's case it is thought that a blood clot that formed in a vein near her liver is the culprit, and that a piece of that broke off and travelled to her brain. Why she developed this clot is not clear, as neither of us has a clotting disorder. She did, and now that is all that matters, because it cannot be undone.
The result is a large area of brain damage, in the right occipital lobe and surrounding areas. Here is a complete listing of the resulting conditions: severe and poorly controlled epilepsy, anxiety, impaired gross and fine motor skills, cognitive delay, missing sight and hearing on the left side, ADD, symptoms similar to Non Verbal Learning disability, sleep disorder, and a younger emotional age.
I will make an entry about each of these, or else this post will become a novel. Before I end this post, I want to list her strengths: she is strongly empathetic, has a wonderful sense of humour, and she reads voraciously. She started reading at two, when she could name her alphabet randomly from magnets on the fridge. She still spends hours playing with the letters on the fridge. As a result she has an amazing and appealing vocabulary.
My hope is that this blog will help educate people about children like my daughter, can be a way that I share all that I have learned with others, and that others will share what they have learned with me. I hope to do this with humour and compassion. Please join us.
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