Seizures under control. Good doctor. Good service. Wonderful office staff. People that treat my daughter like a little human being. Oh wait, she is.
It's only a 5 hour flight. We can do this.
I am just thankful that we are here.
Thursday, February 28, 2008
Tuesday, February 19, 2008
A few things that have come in handy this week:
A "pre-eminent scholar" in epilepsy research making a few calls for us.
A parent who knows "pre-eminent scholars."
A lawyer brother who is investigating whether the PN acted discriminatorily or unethically. Unasked.
A department head trying to cover his @$$, and promising us an appointment at our earliest convenience, or an urgent referral to another neurology clinic. (I think he would be quite glad to see the last of us.)
A paediatric epileptologist calling from across the country, genuinely concerned about our daughter, and offering her services.
It would be handy to have everything confirmed and be ready to leave tomorrow, but it will probably be another week before we can finalize things. I can deal with another week much more easily than 6 months.
A "pre-eminent scholar" in epilepsy research making a few calls for us.
A parent who knows "pre-eminent scholars."
A lawyer brother who is investigating whether the PN acted discriminatorily or unethically. Unasked.
A department head trying to cover his @$$, and promising us an appointment at our earliest convenience, or an urgent referral to another neurology clinic. (I think he would be quite glad to see the last of us.)
A paediatric epileptologist calling from across the country, genuinely concerned about our daughter, and offering her services.
It would be handy to have everything confirmed and be ready to leave tomorrow, but it will probably be another week before we can finalize things. I can deal with another week much more easily than 6 months.
Thursday, February 14, 2008
An Entire Day Spent on the Phone
And it may be starting to get us somewhere.
I called the PE; no cancellations yet. I called the PN; not willing to make a more urgent referral. I called the head of neurology, and left a voicemail. I cried when I talked to his secretary who scheduled a time for him to call me next week. She said he might be willing to look into Kid1's information and give us the referral. She said she would print it off and put it in his inbox to look at tomorrow. She said she would mark it urgent and hoped tomorrow was a slow day for him so that he would have time to look it over. I cried when I thanked her.
I talked to a friend's nephew's wife, who is in a neurology rotation at a children's hospital in B.C., who told me to get together her records and a video of the seizures, send them to her and she would present it to her mentor. She suggested forwarding the same information to every PE in the country. Her reasoning is that if Kid1 can get in with one PE as a new patient, almost any PE would accept her as a referred patient because someone else would have already done the work and it would just be monitoring.
I called the PN again to ask them to forward their records to the paediatrician. I called our paediatrician and asked her receptionist to get all the records together so that I could sent out packets express post tomorrow afternoon. I asked the paed. to give us a secondary referral to the PE and a referral for a new PN. Which she did, but too late in the day for me to call about appointments.
I called my dad, and cried, and he called a friend who is a retired epileptologist in my dad's home country, who offered to look at her info and try to make a few calls, even though he is not sure how much influence he would have here.
I called the hospital where PN is an associate and inquired about making a formal complaint against him and was strongly discouraged from doing so, but told I could do that through the federal medical practitioners board. Which we probably will.
Lots of leads, but no promises. It is frustrating that my daughter desperately needs this care and it seems to be just out of our reach and as though whether or not she gets it anytime soon depends entirely on the goodwill and interest of professionals. I am not enjoying this process, but I don't intend to quit until we get a solid appt with a PE within the near future.
Tomorrow, I will call the PE and the PN again, visit the paed, send out packets and begin contacting PEs in Canada and a few in the US. And hope that my boss understands why I am taking the day off work and doesn't fire me since I have done this a lot lately.
I called the PE; no cancellations yet. I called the PN; not willing to make a more urgent referral. I called the head of neurology, and left a voicemail. I cried when I talked to his secretary who scheduled a time for him to call me next week. She said he might be willing to look into Kid1's information and give us the referral. She said she would print it off and put it in his inbox to look at tomorrow. She said she would mark it urgent and hoped tomorrow was a slow day for him so that he would have time to look it over. I cried when I thanked her.
I talked to a friend's nephew's wife, who is in a neurology rotation at a children's hospital in B.C., who told me to get together her records and a video of the seizures, send them to her and she would present it to her mentor. She suggested forwarding the same information to every PE in the country. Her reasoning is that if Kid1 can get in with one PE as a new patient, almost any PE would accept her as a referred patient because someone else would have already done the work and it would just be monitoring.
I called the PN again to ask them to forward their records to the paediatrician. I called our paediatrician and asked her receptionist to get all the records together so that I could sent out packets express post tomorrow afternoon. I asked the paed. to give us a secondary referral to the PE and a referral for a new PN. Which she did, but too late in the day for me to call about appointments.
I called my dad, and cried, and he called a friend who is a retired epileptologist in my dad's home country, who offered to look at her info and try to make a few calls, even though he is not sure how much influence he would have here.
I called the hospital where PN is an associate and inquired about making a formal complaint against him and was strongly discouraged from doing so, but told I could do that through the federal medical practitioners board. Which we probably will.
Lots of leads, but no promises. It is frustrating that my daughter desperately needs this care and it seems to be just out of our reach and as though whether or not she gets it anytime soon depends entirely on the goodwill and interest of professionals. I am not enjoying this process, but I don't intend to quit until we get a solid appt with a PE within the near future.
Tomorrow, I will call the PE and the PN again, visit the paed, send out packets and begin contacting PEs in Canada and a few in the US. And hope that my boss understands why I am taking the day off work and doesn't fire me since I have done this a lot lately.
Wednesday, February 13, 2008
I am angry, so angry that I forget to breathe when I think about the situation.
We have long suspected that our darling Kid1 has been having seizures. We got a referral for evaluation and then waited impatiently for 3 months for a neurology appointment with the neurologist that already follows her case. Being the squeaky wheel and calling everyday resulted in the appointment being moved up a grand total of two weeks.
Today - finally - the big day, we head off to the neuro's office who looks at the latest EEG, and actually sees our daughter have numerous seizures in his office. He tells us he is sure she is having seizures and that he strongly suspects they are directly related to her ever decreasing function. Like a little worm eating away at her brain, every time she seizes, she loses a few more brain cells.
And then he refers us to a specialist and walks out. No medication, no tangible intervention, no help. He - someone who specializes in the study of the brains of children - tells me that something is destroying my daughter's brain a little at a time and then he does absolutely nothing about it.
I left, and I called in the referral. Our wait time for the specialist - a paediatric epileptologist - is estimated to be 6 months. They don't even book appointments for new patients this far out.
I thought perhaps our neuro wasn't aware of this lovely policy, and called his office to ask for another appointment, another referral, a medication, just something.
He knows. He just doesn't care. He doesn't want to treat my daughter.
I can't even begin to express my outrage over this situation.
Well, I can be a pain in the ass, total bitch if that's what it will take to keep him from brushing us off like bugs. I can call his office every week, every day or every hour until he offers up a better solution. I can cry daily on the phone to the PE's receptionist. I can beg any and all of our other health care providers for second opinions, more referrals, to have strings pulled. I am tempted to call him on discrimination, that he has made the value judgement that her brain damage is bad enough, that she is so retarded, that a little more won't change anything. That he sees her disabilities instead of her. That he is not following his oath, to do no harm. To gather other families who feel this way and bring a formal complaint against him.
But I can't make him see that she is a human being, and that she deserves not to lose her standard of living even if it doesn't live up to his standard.
And it breaks my heart. And it makes me angry.
We have long suspected that our darling Kid1 has been having seizures. We got a referral for evaluation and then waited impatiently for 3 months for a neurology appointment with the neurologist that already follows her case. Being the squeaky wheel and calling everyday resulted in the appointment being moved up a grand total of two weeks.
Today - finally - the big day, we head off to the neuro's office who looks at the latest EEG, and actually sees our daughter have numerous seizures in his office. He tells us he is sure she is having seizures and that he strongly suspects they are directly related to her ever decreasing function. Like a little worm eating away at her brain, every time she seizes, she loses a few more brain cells.
And then he refers us to a specialist and walks out. No medication, no tangible intervention, no help. He - someone who specializes in the study of the brains of children - tells me that something is destroying my daughter's brain a little at a time and then he does absolutely nothing about it.
I left, and I called in the referral. Our wait time for the specialist - a paediatric epileptologist - is estimated to be 6 months. They don't even book appointments for new patients this far out.
I thought perhaps our neuro wasn't aware of this lovely policy, and called his office to ask for another appointment, another referral, a medication, just something.
He knows. He just doesn't care. He doesn't want to treat my daughter.
I can't even begin to express my outrage over this situation.
Well, I can be a pain in the ass, total bitch if that's what it will take to keep him from brushing us off like bugs. I can call his office every week, every day or every hour until he offers up a better solution. I can cry daily on the phone to the PE's receptionist. I can beg any and all of our other health care providers for second opinions, more referrals, to have strings pulled. I am tempted to call him on discrimination, that he has made the value judgement that her brain damage is bad enough, that she is so retarded, that a little more won't change anything. That he sees her disabilities instead of her. That he is not following his oath, to do no harm. To gather other families who feel this way and bring a formal complaint against him.
But I can't make him see that she is a human being, and that she deserves not to lose her standard of living even if it doesn't live up to his standard.
And it breaks my heart. And it makes me angry.
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