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Thank you so much for posting this. Really, THANK YOU, kind stranger. Here in the Czech Republic we're always forced by doctors to do AE/TE to our son despite b

Thank you so much for posting this. Really, THANK YOU, kind stranger. Here in the Czech Republic we're always forced by doctors to do AE/TE to our son despite being mildly affected by strep as we are fighting PANDAS. The latest research converges on that AE/TE is not effective, and that we're doing the right thing by not doing the operation. It looks like doctors even in the most advanced medical institutions are blindly following old books here and still recommend to take the tonsils out at every occasion and eat bags of antibiotics "just for any case." The level of medicine here is so abysmal (except, probably, surgery) that we now have to rely mostly on our own heads and collect the latest research. Thank you.

headmelted 8y ago
You're right to be cautious and fact check everything you're told. I apologise if my response becomes overly ranty. This isn't to scare you, just to encourage you that you're doing the right thing by taking such an active role in your child's care. I have views on this that would seem to most people to be seriously conflicted. I'm militantly pro-science, and I argue constantly in the face of anti-science and pseudo-scientific bullshit anywhere I hear it. It makes me no fun at all at parties, and even some family members groan whenever someone brings up "alternative views" to the scientific consensus on much of anything as they know I'm about to start lecturing, whether it's climate change, vaccination, flat earth (<- seriously) or most of anything else. On the other hand, my personal experiences of how medical science is applied locally by doctors and surgeons has made me entirely disillusioned with their whole industry, and I never trust anything I'm told without confirming it for myself. To explain, I'm based in Northern Ireland, and a debate has gone on for a long time as to whether our National Health Service (NHS) is struggling or in trouble. In reality, it has already imploded. This isn't hyperbole. Here's an exact quote from the BBC: "Northern Ireland has some of the worst performance figures in the UK. During the Christmas period, the number of patients seen in four hours in A&E departments dropped to 63%. Exactly the same proportion started their cancer treatment within 62 days, according to the latest statistics, while the numbers waiting longer than they should for a routine operation have almost doubled in the past four years." This hits home for me really hard. In the last six years my extended family has experienced: - Two missed cancer diagnoses. - A potentially serious (and time-sensitive) diagnosis requiring specialist follow up that was missed on two seperate occasions. - Delayed treatments for potentially life-threatening cancer of over 100% of the recommended waiting period. Our local hospital has become known as a place more likely to kill you than help you, due to how abysmal the standard of care is. Here's a link from a couple of months ago: https://www.irishnews.com/news/2018/03/15/news/pensioner-dies-in-chaotic-a-e-department-1278554/ https://www.irishnews.com/news/2018/03/15/news/pensioner-die... Life threatening emergencies that arrive by ambulance are often left unattended for over four hours (this is recorded in the public record thanks to open data laws). I sincerely hope the circumstances in the Czech Republic are better and that the doctors are much less overworked and much more capable of helping you, my intention here is just to give you encouragement that you're right in not just assuming that your child's in safe hands without you being involved.
- isolli 8y ago
  I believe you find this article interesting: https://www.nytimes.com/2015/08/11/upshot/labels-like-alternative-medicine-dont-matter-the-science-does.html https://www.nytimes.com/2015/08/11/upshot/labels-like-altern... "My friends who believe in homeopathy don’t really care. Those who favor conventional medicine, though, can be just as blinded. Too often, when confronted with evidence that advanced technology might not be providing benefits, the medical community refuses to change its behavior." He goes on to argue that the distinction between conventional and alternative medicine is misleading. The only distinction should be between what is proven and what is disproven.
  - gowld 8y ago
    "Alternative" means "unproven or disproven", doesn't it?
    - isolli 8y ago
      I don't know, it's a matter of definition. What I know is that the article makes a good point.
    - Chris_Jay 8y ago
      To pro-alternative folks like myself it just means "not in the medical textbooks yet". Most 'alternative' approaches do have rigorous studies backing them up, just recent and ignored by a lot of people.
      - frostburg 8y ago
        Homeopathy doesn't work. Acupunture doesn't work. Traditional Chinese Medicine doesn't work. Faith healing doesn't work. These rigorous studies you're mentioning do not exist.
        isolli 8y ago
        This meta-study supports the use of acupuncture to treat chronic pain: https://jamanetwork.com/journals/jamainternalmedicine/fullarticle/1357513 https://jamanetwork.com/journals/jamainternalmedicine/fullar...
graycrow 8y ago
Can confirm that. Recently visited an otorhinolaryngologist with my 3 y.o. daughter having a blocked nose for too long after being sick, and the conversation started with typical "Why you even bothered to come here with such insignificant issue" and ended with "She have an enlarged adenoids, you need to remove them". And all of that been said only after short visual check of a crying child's nose. What you even able see there, with such tools and conditions? Of course I didn't trust the doctor at all, after that quick check-up and bold statements. And this is not a single doctor, after a many encounters with other doctors I can say that the whole health care system here, in the Czech Republic, is screwed up. Doctors are too ignorant and unprofessional to have so big self-confidence (often replaced by just being rude) as they have here.
- kingkawn 8y ago
  Everything is based on population averages and fealty to academic research guidelines. But, like any population wide conclusions, it is a tricky move to apply them back to any given individual in the population.
usaphp 8y ago
We went to a really good Ear nose throat doctor in San Diego hospital because our son had a long lasting runny nose, and they also told us to remove his tonsils and adenoids. I did not want to have them removed because of the involvement of sleep drugs necessary for operation, so we tried multiple ways to find the issue of the running nose, turned out it was something to do with the oil vaporizer they used in his preschool class, as soon as they removed it - his runny nose poeblem went away.
- testplzignore 8y ago
  You've piqued my curiosity. Why would a preschool have an oil vaporizer?
  - beauzero 8y ago
    For smell. You can get Glade plugins or on the essential oils side a diffuser. We have used both in our family.
    - goldenkey 8y ago
      That is beyond retarded...and a school is supposed to instruct kids in the truthful ways of life? Spraying oil does NOT eliminate aromatic odor molecules. All it does is dilute their presence. In addition, all of these essential oils are from plants, which many people are randomly allergic or inflamed by. Essential oils are for a home. Spraying essential oils into public airspace is such a dick move. Sorry about your kid, sucks when people spray biologically active drugs into the air that other people have to breathe.
      - coaxial 8y ago
        > school is supposed to instruct kids in the truthful ways of life? If only that was true...
      - winslett 8y ago
        The school is looking forward to your job application to be a preschool teacher. You'll have the following benefits: * $32k annual salary You'll have the responsibility to take care of the most precious little things that have every walked the earth. Your management are the parents, or as they like to call themselves "the people who pay your salary". These management want you to know they would do nearly everything you attempt to do differently than you do it. They want you to know they would do it differently, but they would never actually do it. You'll need to show up at 7:15am sharp. You'll be able to leave as soon as the last parent picks up their child, which is sometime around 6:15pm. We are happy to have you on the team. Edit: in education, there is asymmetry of requirements (similar to the asymmetry of bullshit). The boots-on-the-ground educator has 70-years worth of legal duties to be performed. This educator is working with a wide variety of incoming supplies (i.e. the little humans). Additionally, nearly everyone thinks they are capable of being a teacher, and their own recommendations and their own requirements. The flippant demand that we should prevent $3.50 Glade plugins in a classroom in the scope of all the other things that matter is asymmetrical bullshit. A kid had a runny nose. Medical advice was to remove tonsils. The parents pushed back and found the real problem. Maybe the $3.50 Glade plugin covered for another kid who was being bullied because of body odor? Or, maybe it cut down on distractions from nearby human pollution odors? Perhaps, the preschool is the lowest cost preschool around because the parents are cheap and do not want to pay market-rate for childcare. Thus, to be able to break even, the preschool uses a building used has a mold and water problem. Of all the things that can be improved with education in the US, we decide on an internet forum that a $3.50 Glade plugin is the root of all evil for education because it masks instead of removes odors.
dandare 8y ago
From a personal experience, the public health care in Czech Republic is way much better than NHS or what you can afford as a middle-income family in US. The equation changes when you can afford private care.
- neffy 8y ago
  The NHS stopped the entire tonsil removal thing decades ago.
- merpnderp 8y ago
  A middle income family in the US usually has insurance that covers just about any specialist they want to see. MD Anderson, likely the best cancer institute in the world, accepts almost everyone's insurance (and also does about $100,000,000 of free work for those without). The only people really limited in who they can see are those on public insurance like state coverage Medicaid for the poor or federal Medicare for the elderly. Those programs usually only pay a percentage of market value, and thus many doctors won't take them because they often lose money on the transaction.
  - Tloewald 8y ago
    As someone living in the US with far better medical coverage than average I am awestruck by how wrong this statement is. Have you ever had to deal with a serious illness in the US?
    - merpnderp 8y ago
      Yes, with several family members. With middling insurance in Oklahoma. I'm quite well versed in how Blue Cross Blue Shield's tiered policies work with several types of specialists. If you are awestruck, perhaps it is you who needs to learn a bit more.
    - refurb 8y ago
      What was exactly incorrect? I would agree that "you can see any specialist you want" is an exaggeration, but as someone with good insurance, I have about 100+ different ENTs in the bay area I could bring my daughter to, Stanford and UCSF included.
saint_anton 8y ago
Not knowing what PANDAS is made for an interesting first read.

headmelted 8y ago

You're right to be cautious and fact check everything you're told. I apologise if my response becomes overly ranty. This isn't to scare you, just to encourage you that you're doing the right thing by taking such an active role in your child's care. I have views on this that would seem to most people to be seriously conflicted. I'm militantly pro-science, and I argue constantly in the face of anti-science and pseudo-scientific bullshit anywhere I hear it. It makes me no fun at all at parties, and even some family members groan whenever someone brings up "alternative views" to the scientific consensus on much of anything as they know I'm about to start lecturing, whether it's climate change, vaccination, flat earth (<- seriously) or most of anything else. On the other hand, my personal experiences of how medical science is applied locally by doctors and surgeons has made me entirely disillusioned with their whole industry, and I never trust anything I'm told without confirming it for myself. To explain, I'm based in Northern Ireland, and a debate has gone on for a long time as to whether our National Health Service (NHS) is struggling or in trouble. In reality, it has already imploded. This isn't hyperbole. Here's an exact quote from the BBC: "Northern Ireland has some of the worst performance figures in the UK. During the Christmas period, the number of patients seen in four hours in A&E departments dropped to 63%. Exactly the same proportion started their cancer treatment within 62 days, according to the latest statistics, while the numbers waiting longer than they should for a routine operation have almost doubled in the past four years." This hits home for me really hard. In the last six years my extended family has experienced: - Two missed cancer diagnoses. - A potentially serious (and time-sensitive) diagnosis requiring specialist follow up that was missed on two seperate occasions. - Delayed treatments for potentially life-threatening cancer of over 100% of the recommended waiting period. Our local hospital has become known as a place more likely to kill you than help you, due to how abysmal the standard of care is. Here's a link from a couple of months ago: https://www.irishnews.com/news/2018/03/15/news/pensioner-dies-in-chaotic-a-e-department-1278554/ https://www.irishnews.com/news/2018/03/15/news/pensioner-die... Life threatening emergencies that arrive by ambulance are often left unattended for over four hours (this is recorded in the public record thanks to open data laws). I sincerely hope the circumstances in the Czech Republic are better and that the doctors are much less overworked and much more capable of helping you, my intention here is just to give you encouragement that you're right in not just assuming that your child's in safe hands without you being involved.

isolli 8y ago
I believe you find this article interesting: https://www.nytimes.com/2015/08/11/upshot/labels-like-alternative-medicine-dont-matter-the-science-does.html https://www.nytimes.com/2015/08/11/upshot/labels-like-altern... "My friends who believe in homeopathy don’t really care. Those who favor conventional medicine, though, can be just as blinded. Too often, when confronted with evidence that advanced technology might not be providing benefits, the medical community refuses to change its behavior." He goes on to argue that the distinction between conventional and alternative medicine is misleading. The only distinction should be between what is proven and what is disproven.
- gowld 8y ago
  "Alternative" means "unproven or disproven", doesn't it?
  - isolli 8y ago
    I don't know, it's a matter of definition. What I know is that the article makes a good point.
  - Chris_Jay 8y ago
    To pro-alternative folks like myself it just means "not in the medical textbooks yet". Most 'alternative' approaches do have rigorous studies backing them up, just recent and ignored by a lot of people.
    - frostburg 8y ago
      Homeopathy doesn't work. Acupunture doesn't work. Traditional Chinese Medicine doesn't work. Faith healing doesn't work. These rigorous studies you're mentioning do not exist.
      - isolli 8y ago
        This meta-study supports the use of acupuncture to treat chronic pain: https://jamanetwork.com/journals/jamainternalmedicine/fullarticle/1357513 https://jamanetwork.com/journals/jamainternalmedicine/fullar...

graycrow 8y ago

Can confirm that. Recently visited an otorhinolaryngologist with my 3 y.o. daughter having a blocked nose for too long after being sick, and the conversation started with typical "Why you even bothered to come here with such insignificant issue" and ended with "She have an enlarged adenoids, you need to remove them". And all of that been said only after short visual check of a crying child's nose. What you even able see there, with such tools and conditions? Of course I didn't trust the doctor at all, after that quick check-up and bold statements. And this is not a single doctor, after a many encounters with other doctors I can say that the whole health care system here, in the Czech Republic, is screwed up. Doctors are too ignorant and unprofessional to have so big self-confidence (often replaced by just being rude) as they have here.

kingkawn 8y ago
Everything is based on population averages and fealty to academic research guidelines. But, like any population wide conclusions, it is a tricky move to apply them back to any given individual in the population.

usaphp 8y ago

We went to a really good Ear nose throat doctor in San Diego hospital because our son had a long lasting runny nose, and they also told us to remove his tonsils and adenoids. I did not want to have them removed because of the involvement of sleep drugs necessary for operation, so we tried multiple ways to find the issue of the running nose, turned out it was something to do with the oil vaporizer they used in his preschool class, as soon as they removed it - his runny nose poeblem went away.

testplzignore 8y ago
You've piqued my curiosity. Why would a preschool have an oil vaporizer?
- beauzero 8y ago
  For smell. You can get Glade plugins or on the essential oils side a diffuser. We have used both in our family.
  - goldenkey 8y ago
    That is beyond retarded...and a school is supposed to instruct kids in the truthful ways of life? Spraying oil does NOT eliminate aromatic odor molecules. All it does is dilute their presence. In addition, all of these essential oils are from plants, which many people are randomly allergic or inflamed by. Essential oils are for a home. Spraying essential oils into public airspace is such a dick move. Sorry about your kid, sucks when people spray biologically active drugs into the air that other people have to breathe.
    - coaxial 8y ago
      > school is supposed to instruct kids in the truthful ways of life? If only that was true...
    - winslett 8y ago
      The school is looking forward to your job application to be a preschool teacher. You'll have the following benefits: * $32k annual salary You'll have the responsibility to take care of the most precious little things that have every walked the earth. Your management are the parents, or as they like to call themselves "the people who pay your salary". These management want you to know they would do nearly everything you attempt to do differently than you do it. They want you to know they would do it differently, but they would never actually do it. You'll need to show up at 7:15am sharp. You'll be able to leave as soon as the last parent picks up their child, which is sometime around 6:15pm. We are happy to have you on the team. Edit: in education, there is asymmetry of requirements (similar to the asymmetry of bullshit). The boots-on-the-ground educator has 70-years worth of legal duties to be performed. This educator is working with a wide variety of incoming supplies (i.e. the little humans). Additionally, nearly everyone thinks they are capable of being a teacher, and their own recommendations and their own requirements. The flippant demand that we should prevent $3.50 Glade plugins in a classroom in the scope of all the other things that matter is asymmetrical bullshit. A kid had a runny nose. Medical advice was to remove tonsils. The parents pushed back and found the real problem. Maybe the $3.50 Glade plugin covered for another kid who was being bullied because of body odor? Or, maybe it cut down on distractions from nearby human pollution odors? Perhaps, the preschool is the lowest cost preschool around because the parents are cheap and do not want to pay market-rate for childcare. Thus, to be able to break even, the preschool uses a building used has a mold and water problem. Of all the things that can be improved with education in the US, we decide on an internet forum that a $3.50 Glade plugin is the root of all evil for education because it masks instead of removes odors.

dandare 8y ago

From a personal experience, the public health care in Czech Republic is way much better than NHS or what you can afford as a middle-income family in US. The equation changes when you can afford private care.

neffy 8y ago
The NHS stopped the entire tonsil removal thing decades ago.
merpnderp 8y ago
A middle income family in the US usually has insurance that covers just about any specialist they want to see. MD Anderson, likely the best cancer institute in the world, accepts almost everyone's insurance (and also does about $100,000,000 of free work for those without). The only people really limited in who they can see are those on public insurance like state coverage Medicaid for the poor or federal Medicare for the elderly. Those programs usually only pay a percentage of market value, and thus many doctors won't take them because they often lose money on the transaction.
- Tloewald 8y ago
  As someone living in the US with far better medical coverage than average I am awestruck by how wrong this statement is. Have you ever had to deal with a serious illness in the US?
  - merpnderp 8y ago
    Yes, with several family members. With middling insurance in Oklahoma. I'm quite well versed in how Blue Cross Blue Shield's tiered policies work with several types of specialists. If you are awestruck, perhaps it is you who needs to learn a bit more.
  - refurb 8y ago
    What was exactly incorrect? I would agree that "you can see any specialist you want" is an exaggeration, but as someone with good insurance, I have about 100+ different ENTs in the bay area I could bring my daughter to, Stanford and UCSF included.

saint_anton 8y ago

Not knowing what PANDAS is made for an interesting first read.