Okay, wow it's been busy lately. I've been walking eight miles a day just to get B to her summer program, not including walking the dogs. I have to walk them separately, because the walks have been too long and too hot for Sparky. I've cut B back to just two days a week because it was too much for her as well. She became physical with me on Wednesday, which indicates stress. Her neurologist told me to keep her stress low to avoid seizures, but also, I have to choose my battles. A summer program was supposed to be something fun, not a chore for her.
I also am not crazy about the woman running the program. I told her that B only manifested the behaviour issues last year, and she gave B a chastising look and asked her why she would do that. I was very taken aback. I told her to stop that and that B may have manifested bi-polar symptoms from meds, at least, that is what B's psychiatrist thinks. The woman said that it wasn't bi-polar, she knows bi-polar, and that the problem with doctors is that they think they're god. I was not impressed. She runs a summer program. I'm sure she has an expertise in that, but I can't imagine what kind of arrogance it takes, after only knowing people a couple of weeks, to completely dismiss their history, the opinion of the specialists that work with them, and substitute your own diagnosis without even being asked. I *like* B's psyche and counsellor, I have found them to be very conservative in their treatment and assessment, and they follow my lead on everything.
I told her that I'm an atheist, I don't think anyone is god, and I'll thank her very much not to dismiss all the work we've done. This led into a discussion that her belief system makes her an optimist, and that miracles happen all the time, so B's brain injury could just, I don't know, spontaneously heal or something. Just like all those people that have regenerated missing limbs.
It has been awhile since I've encountered this attitude so blantantly. But the importance of the program is for B to get out and do stuff and hang out with the kids in the program, so I haven't pulled B out. I will be looking for a different program next summer.
We had a bit of a scare two weeks ago when we thought we might have to put Sparky down. He stopped pooping and was in obvious discomfort. I love that dog. We did everything to get him to poop, I even gave him two enemas. Seriously, I have never thought I would do that, but I did. We gave him laxatives, and olive oil, too. A visit to the vet, which was so stressful for him, he hates vets, revealed a mass under his spine. There's nothing to do about that, he's 14 years old. Even *if* he survived surgery, he'd never heal properly. But he finally had a poop on the day we had were going to take him in, and I almost did a happy dance of poop on the street. I'm sure he felt the same way. So we get some more time with him.
And, on to the bike fund. I have to say, that I was really surprised at the response, and I am overwhelmed by people's generosity. As of today, there's almost $800 in the Paypal account, with more people planning to contribute. We discovered that if we have the bike shipped to Seattle instead of here, we can save $450, meaning the bike will cost about $1600, so it is firmly within our reach now. But I want to say a very sincere thank you to my friends and their friends for helping out, and a special thank you to Dot at Busted Button, who auctioned of a painting for B. That was unexpected and truly kind. Thank you.
Showing posts with label Specialists. Show all posts
Showing posts with label Specialists. Show all posts
Friday, July 20, 2012
Thursday, May 31, 2012
New Puppy and IEP
Phew, the last few weeks have been hectic. We got a new puppy, just three months old, and he is a handful. Such a cutie, though, and he will end up being a very big dog. He's a Shepherd/Retriever mix, and we named him Crowbar. I'll post pictures later. B loves him.
Sparky tolerates him, but he lets the puppy sleep next to him, and he's pretty patient with him. The puppy adores Sparky.
In other news, we finally had an IEP at B's school. That is an Individualized Education Plan, and we should have two a year, but with the teacher's job action, we had to wait. B is doing well in class, even with her behaviour problems. Her teacher said that she is the only kid in class who gets their jokes.
Her counsellor, Behaviour Consultant, and Social Worker all went to the meeting. We will keep working on her social skills, peer interaction, and Life Skills development. She has had some hard times dealing with the kids in her class, because her social skills are very undeveloped.
We put her in a Life Skills class on Saturdays, run by CLBC, and for the summer I will enroll her in another Life Skills program, one that I hope she will continue in the fall.
Her neurologist is retiring. We have had him as her doctor for many years, and I quite like him. We don't have a new one yet.
Sparky tolerates him, but he lets the puppy sleep next to him, and he's pretty patient with him. The puppy adores Sparky.
In other news, we finally had an IEP at B's school. That is an Individualized Education Plan, and we should have two a year, but with the teacher's job action, we had to wait. B is doing well in class, even with her behaviour problems. Her teacher said that she is the only kid in class who gets their jokes.
Her counsellor, Behaviour Consultant, and Social Worker all went to the meeting. We will keep working on her social skills, peer interaction, and Life Skills development. She has had some hard times dealing with the kids in her class, because her social skills are very undeveloped.
We put her in a Life Skills class on Saturdays, run by CLBC, and for the summer I will enroll her in another Life Skills program, one that I hope she will continue in the fall.
Her neurologist is retiring. We have had him as her doctor for many years, and I quite like him. We don't have a new one yet.
Friday, February 4, 2011
One Of B's Gifts
Along with reading, which B has always excelled at, one of her other talents is remembering both the words and the melody of songs. The kid is a sponge for music. I keep trying to get her interested in choir, or voice lessons, but she won't go for it. She only needs to hear a song once to get it down, and she will remember it for years, spontaneously usually.
Two days ago, on Wednesday, we had an appointment at Hematology. B needs to get some blood work down, because we are going to suppress her period. The pediatric gynecologist needs to know if she's at risk for further strokes, so that we can decide how to do that. Birth control can increase the risk of strokes. We had to wait for the doctor for a long time, which meant having to keep B entertained. For a while she was happy wearing a mask and pretending she was the Grinch Doctor who was going to operate on me.
I got her up to waltz with me, while I hummed. All of a sudden she said, "I know the Coast Salish National Anthem," and she started to sing it. She sang the whole thing, very well, with all the tonal changes and proper pacing. I was blown away, and I felt just so overcome with pride for her.
Her school has a large First Nations population, 64% of the student body is First Nations. We are not First Nations, but I have always really liked the diversity of her school. The majority of the other students are English as a second language, largely Asian. This has been an overwhelmingly positive part of her education. Her school teaches a First Nations curriculum, and so she has learned so much about the culture.
I knew, of course, that they sang the Anthem at the school, but I hadn't realised how well she had learned it until she sang it to me.
When she was done, and I wiped my teary eyes, I told her that she had just demonstrated more cultural awareness than most people I had met. And I am so proud of her. And grateful to her classmates and school for sharing that with her.
Two days ago, on Wednesday, we had an appointment at Hematology. B needs to get some blood work down, because we are going to suppress her period. The pediatric gynecologist needs to know if she's at risk for further strokes, so that we can decide how to do that. Birth control can increase the risk of strokes. We had to wait for the doctor for a long time, which meant having to keep B entertained. For a while she was happy wearing a mask and pretending she was the Grinch Doctor who was going to operate on me.
I got her up to waltz with me, while I hummed. All of a sudden she said, "I know the Coast Salish National Anthem," and she started to sing it. She sang the whole thing, very well, with all the tonal changes and proper pacing. I was blown away, and I felt just so overcome with pride for her.
Her school has a large First Nations population, 64% of the student body is First Nations. We are not First Nations, but I have always really liked the diversity of her school. The majority of the other students are English as a second language, largely Asian. This has been an overwhelmingly positive part of her education. Her school teaches a First Nations curriculum, and so she has learned so much about the culture.
I knew, of course, that they sang the Anthem at the school, but I hadn't realised how well she had learned it until she sang it to me.
When she was done, and I wiped my teary eyes, I told her that she had just demonstrated more cultural awareness than most people I had met. And I am so proud of her. And grateful to her classmates and school for sharing that with her.
Thursday, January 20, 2011
Finally, Some Good News
B has been accepted into the At Home Program! Yay! It means that she will get her medical and medicine paid for, get Occupational Therapy , Physiotherapy, Speech Therapy, hearing aid, and any medical equipment paid for. After years of no support, finally she has access to all the intervention she needs and got before entering school.
There was a real chance that she would be turned down, so this is unexpected and happy news.
I might even see if I can get her Massage Therapy for anxiety.
Now, to set all this up.
There was a real chance that she would be turned down, so this is unexpected and happy news.
I might even see if I can get her Massage Therapy for anxiety.
Now, to set all this up.
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.
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.
Sunday, November 7, 2010
The Last Month
Well, wasn't October fun! Let's see, we started with me sick and B having an allergic reaction to her meds. We quickly slid into me having a horrible throat infection and losing my voice for three weeks. Then, just as that seemed to be clearing up, we get lice, and now I have another infection! A horribly painful one. Third one in two months.
On top of that, her school support dropped to unacceptable levels, and I have been trying to help save her school from closing, along with being the PAC chair.
You know what I would like?A terrifically boring November. A total snoozefest. :)
B has been very clingy lately. She is having so many seizures, because one of her meds is dropping faster than the new med is coming up. This is leaving her vulnerable to seizures.
Because of the drop in support, the increase in seizures worries me. Safety is very important, and for her having support is mainly about safety. However, she needs the one-on-one because without it, social interactions become so difficult for her that she simply withdraws. That is not good for her.
An Occupational Therapist saw her at school and agreed with my request for speech recognition on her new computer. Frankly, if writing by hand is too complex for her, I doubt she will ever master touch typing. That requires spatial skills, memorisation, muscle memory and concentration. All areas of difficulty for her.
I think speech recognition will help her use the computer more effectively.
The good news is that her new haircut, which I gave her in a fit of lice fuelled panic, is absolutely adorable. I'll post pictures soon.
On top of that, her school support dropped to unacceptable levels, and I have been trying to help save her school from closing, along with being the PAC chair.
You know what I would like?A terrifically boring November. A total snoozefest. :)
B has been very clingy lately. She is having so many seizures, because one of her meds is dropping faster than the new med is coming up. This is leaving her vulnerable to seizures.
Because of the drop in support, the increase in seizures worries me. Safety is very important, and for her having support is mainly about safety. However, she needs the one-on-one because without it, social interactions become so difficult for her that she simply withdraws. That is not good for her.
An Occupational Therapist saw her at school and agreed with my request for speech recognition on her new computer. Frankly, if writing by hand is too complex for her, I doubt she will ever master touch typing. That requires spatial skills, memorisation, muscle memory and concentration. All areas of difficulty for her.
I think speech recognition will help her use the computer more effectively.
The good news is that her new haircut, which I gave her in a fit of lice fuelled panic, is absolutely adorable. I'll post pictures soon.
Friday, October 8, 2010
Hell Week
Well, this has certainly not been an enjoyable week. B developed a high fever last week, which I assumed indicated she had a cold, since both Andrew and I had bad colds the week before. Then, last Saturday I woke to her having a long (2 minutes) Complex Partial in bed next to me. That would be the reason why I sleep with her. Vomiting and heavy drooling present a choking hazard.
On Sunday her face turned brilliant red and swell up and she still had a high fever, but didn't seem to have other cold symptoms. Sunday night, around 2 a.m., I became concerned that she actually showed a reaction to her meds, the new ones we had just started her on, Tegretol. I feared she might have Stevens-Johnson Syndrome, a horrible necrotizing skin disorder that people can develop from plenty of different medications, but has more links to specific types, like anti-convulsants. I have been told every time she starts or comes off a med to watch for it.
I phoned the nurse's line, but the nurse, who I found to be very kind, couldn't really offer direction. We both decided to wait until the morning to see how B felt.
In the morning she had a rash all over her torso, arms, and up her neck onto her chin. I had a mini panic and got her into the GP in an hour. He agreed that she had an allergic reaction, although he couldn't say for sure either way if she might have Stevens-Johnson. I felt better though, having seen him. The visit was followed by some phone calls to the neurologist, who asked that I bring her in right away, but since that proved impossible, we agreed to have an appt. on Thursday morning. We had actually originally had an appt. Thursday morning, but since she had seen him just two weeks previously, that appt. had been cancelled. Obviously, all this had been a plot by her to keep her commitments. :)
On Thursday she actually had three appointments, 9 a.m. at Children's Hospital, her GP at Hastings and Slocan at 10:30, and an appointment to meet her new counsellor at Child and Youth Mental Health at 2. What a hard and tiring day.
The neurologist has now prescribed Topamax, which belongs in a different drug family, so hopefully she won't have an allergy to it. She's on the mend, but has already had two seizures today, so I've given her an Ativan, which she has been prescribed for Anxiety, but they use it for treating seizures, too. I don't want her going into Status Epilepticus today, as I feel quite done with doctors this week, thank you. They are nice people, but, yeah, we've quite had enough.
But let this demonstrate that I KNEW something more had happened BEFORE she developed the rash. Parents KNOW their children, so do not EVER hesitate to be pushy and demanding in getting them help, and ALWAYS follow your instincts. No doctor is ever going to get angry at having examined a healthy child, not if they are a good doctor. If they do, then they are not a good doctor, get a new one. B's doctors are great.
One thing that worries me about the Topamax is that it induces anorexia (not anorexia nervosa), which she has already had from the Lamotrigine and which she had just recently recovered from somewhat. Oh well, high calorie, fat, and protein kid friendly snack and meal ideas are appreciated.
I am quite tried and pretty grumpy today. I think Andrew has hidden himself away to avoid my grumps.
On Sunday her face turned brilliant red and swell up and she still had a high fever, but didn't seem to have other cold symptoms. Sunday night, around 2 a.m., I became concerned that she actually showed a reaction to her meds, the new ones we had just started her on, Tegretol. I feared she might have Stevens-Johnson Syndrome, a horrible necrotizing skin disorder that people can develop from plenty of different medications, but has more links to specific types, like anti-convulsants. I have been told every time she starts or comes off a med to watch for it.
I phoned the nurse's line, but the nurse, who I found to be very kind, couldn't really offer direction. We both decided to wait until the morning to see how B felt.
In the morning she had a rash all over her torso, arms, and up her neck onto her chin. I had a mini panic and got her into the GP in an hour. He agreed that she had an allergic reaction, although he couldn't say for sure either way if she might have Stevens-Johnson. I felt better though, having seen him. The visit was followed by some phone calls to the neurologist, who asked that I bring her in right away, but since that proved impossible, we agreed to have an appt. on Thursday morning. We had actually originally had an appt. Thursday morning, but since she had seen him just two weeks previously, that appt. had been cancelled. Obviously, all this had been a plot by her to keep her commitments. :)
On Thursday she actually had three appointments, 9 a.m. at Children's Hospital, her GP at Hastings and Slocan at 10:30, and an appointment to meet her new counsellor at Child and Youth Mental Health at 2. What a hard and tiring day.
The neurologist has now prescribed Topamax, which belongs in a different drug family, so hopefully she won't have an allergy to it. She's on the mend, but has already had two seizures today, so I've given her an Ativan, which she has been prescribed for Anxiety, but they use it for treating seizures, too. I don't want her going into Status Epilepticus today, as I feel quite done with doctors this week, thank you. They are nice people, but, yeah, we've quite had enough.
But let this demonstrate that I KNEW something more had happened BEFORE she developed the rash. Parents KNOW their children, so do not EVER hesitate to be pushy and demanding in getting them help, and ALWAYS follow your instincts. No doctor is ever going to get angry at having examined a healthy child, not if they are a good doctor. If they do, then they are not a good doctor, get a new one. B's doctors are great.
One thing that worries me about the Topamax is that it induces anorexia (not anorexia nervosa), which she has already had from the Lamotrigine and which she had just recently recovered from somewhat. Oh well, high calorie, fat, and protein kid friendly snack and meal ideas are appreciated.
I am quite tried and pretty grumpy today. I think Andrew has hidden himself away to avoid my grumps.
Sunday, September 19, 2010
Doctors
This past week, B had two specialist appointments. We saw a pediatric gynecologist on Wednesday. What an incredible specialty. Only two such specialists practice in Vancouver. We discussed suppressing B's menstrual cycle, because I don't think she will have the ability to handle it, and the public health nurse, her pediatrician, and her neurologist all agree. B will not remember to check and change her pads, and would likely need physical help to do that. I want to spare her the stress of having to do all that.
Our choices are hormonal treatments, of which there are less choices than with adult women, or a Mirena IUD, if her uterus is large enough to accommodate one. I don't want to do anything that will affect her ability to have children in the future. I don't feel that I should make that choice for her, and certainly not now. Nor do I want to affect her libido in any way, as I have no reason to expect that she will not want to have loving, sexual relationships when she becomes an adult.
We have to wait until she menstruates to do anything, but the appointment answered my questions, and helped me to feel like I've made a good choice. Before the appointment, I showed her videos on menstruation, and then some on fetal development. The one on fetal development had a rotating 3-D representation of a fetus and, for some reason, B found it uproariously funny. She laughed all the way through it, then ran into the kitchen and yelled, "I am a fetus. I am just developing arms!" then she started spinning and said, "Now I am at 26 weeks," and laughed herself into hysterics. I laughed because of her laughter, but I remain unclear on why she found it so very funny. I suppose that I've just not mined fetal development as a source of comedy, but I should start.
In the waiting room she played with a Rube Goldberg machine. It has two wheels that, when you turn them, move balls up and down a complex series of buckets and ramps. Even I find it very captivating. As she played with it, a young boy about her age came in with his grandmother. He seemed very angry about something, flopping down in a chair, crossing his arms, and giving Grandma the old stink eye. But then he saw B, turning the wheels on the machine, and he went over and asked if he could play. She said sure, and he sat down and started giving directions, to which she kept replying, "I know that," growing quickly annoyed at him.
"Do you come here a lot?" he asked her, "I do. I am a hemophiliac. Do you know what that means? It means I have special blood. If I cut myself," he drew a hand across his arm, "I could bleed to death!"
She turned to him and said, "Do you know that I had a stroke? Do you know what a stroke is? It is when a blood clot goes into your brain. If you had a seizure, you would scream!"
"Oh," he said. And then they repeated the whole conversation.
I found the conversation fascinating, sad, funny, and very revealing. B does not usually volunteer so much information, and I found myself thinking that the two of them would make good friends. But grandma did not look very happy and I let it go. Children's hospital is very stressful, and you have to get a good read on people before you just approach them.
On Friday, we saw her neurologist. Apparently I had missed some calls the day before changing the time from 9:30 a.m. to noon, but after some phone calls the doctor came in at 10:30, so we didn't wait long. The nurse took B for weighing and blood pressure, and I went right into the doctor. We have decided to change her meds, from Lamotrigine and Epival, to Epival and Tegretol. The next few weeks will prove stressful, as I wean her slowly off the Lamotrigine while slowly increasing the Tegretol. That means taking three seizure meds until the process finishes. As usual, I hope this combination will work, but have to remain practical that it might not.
After we got home, the doctor's nurse phoned to tell me that when she had B alone, in response to the nurse's casual chat while she weighed her, B had said she wanted to blow up her school. She doesn't mean that, of course, she picked it up somewhere, and it entered into her series of perseverations that occur when she feels anxious. But, of course, the nurse does have to report it to me, and I have to report it to her new counsellor who will take over her therapy in October. I have had many talks with her about why saying such things might scare people, and had another talk with her after talking to nurse, during which she felt awful, guilty, and embarrassed despite mine and Andrew's assurances that we know she doesn't mean it, didn't mean to say it, and that we both love her.
In other news, she had two seizures this week, one on Wednesday crossing First Ave. at Commercial, which scared me because I had to hold up the traffic, and one tonight, in the bathtub. I can't pick her up anymore, so I will have to get a bath chair or something, because trying to move her around the bathtub has become very difficult.
Our choices are hormonal treatments, of which there are less choices than with adult women, or a Mirena IUD, if her uterus is large enough to accommodate one. I don't want to do anything that will affect her ability to have children in the future. I don't feel that I should make that choice for her, and certainly not now. Nor do I want to affect her libido in any way, as I have no reason to expect that she will not want to have loving, sexual relationships when she becomes an adult.
We have to wait until she menstruates to do anything, but the appointment answered my questions, and helped me to feel like I've made a good choice. Before the appointment, I showed her videos on menstruation, and then some on fetal development. The one on fetal development had a rotating 3-D representation of a fetus and, for some reason, B found it uproariously funny. She laughed all the way through it, then ran into the kitchen and yelled, "I am a fetus. I am just developing arms!" then she started spinning and said, "Now I am at 26 weeks," and laughed herself into hysterics. I laughed because of her laughter, but I remain unclear on why she found it so very funny. I suppose that I've just not mined fetal development as a source of comedy, but I should start.
In the waiting room she played with a Rube Goldberg machine. It has two wheels that, when you turn them, move balls up and down a complex series of buckets and ramps. Even I find it very captivating. As she played with it, a young boy about her age came in with his grandmother. He seemed very angry about something, flopping down in a chair, crossing his arms, and giving Grandma the old stink eye. But then he saw B, turning the wheels on the machine, and he went over and asked if he could play. She said sure, and he sat down and started giving directions, to which she kept replying, "I know that," growing quickly annoyed at him.
"Do you come here a lot?" he asked her, "I do. I am a hemophiliac. Do you know what that means? It means I have special blood. If I cut myself," he drew a hand across his arm, "I could bleed to death!"
She turned to him and said, "Do you know that I had a stroke? Do you know what a stroke is? It is when a blood clot goes into your brain. If you had a seizure, you would scream!"
"Oh," he said. And then they repeated the whole conversation.
I found the conversation fascinating, sad, funny, and very revealing. B does not usually volunteer so much information, and I found myself thinking that the two of them would make good friends. But grandma did not look very happy and I let it go. Children's hospital is very stressful, and you have to get a good read on people before you just approach them.
On Friday, we saw her neurologist. Apparently I had missed some calls the day before changing the time from 9:30 a.m. to noon, but after some phone calls the doctor came in at 10:30, so we didn't wait long. The nurse took B for weighing and blood pressure, and I went right into the doctor. We have decided to change her meds, from Lamotrigine and Epival, to Epival and Tegretol. The next few weeks will prove stressful, as I wean her slowly off the Lamotrigine while slowly increasing the Tegretol. That means taking three seizure meds until the process finishes. As usual, I hope this combination will work, but have to remain practical that it might not.
After we got home, the doctor's nurse phoned to tell me that when she had B alone, in response to the nurse's casual chat while she weighed her, B had said she wanted to blow up her school. She doesn't mean that, of course, she picked it up somewhere, and it entered into her series of perseverations that occur when she feels anxious. But, of course, the nurse does have to report it to me, and I have to report it to her new counsellor who will take over her therapy in October. I have had many talks with her about why saying such things might scare people, and had another talk with her after talking to nurse, during which she felt awful, guilty, and embarrassed despite mine and Andrew's assurances that we know she doesn't mean it, didn't mean to say it, and that we both love her.
In other news, she had two seizures this week, one on Wednesday crossing First Ave. at Commercial, which scared me because I had to hold up the traffic, and one tonight, in the bathtub. I can't pick her up anymore, so I will have to get a bath chair or something, because trying to move her around the bathtub has become very difficult.
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