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Because there is some interest in causality (vs. correlation), we talked briefly about the use of Structural Equation Modeling (SEM) in the analysis in immunology. SEM is an extension of general linear regression but has several advantages. It provides a mechanism to test causality, provides simultaneous estimation of terms as to not inflate alpha, to test path models which could be used to model many of the mechanisms, takes into account error in measurement, and most importantly provides a mechanism for exploring endogenous and exogenous “latent” variables.
Here are some starter questions ...
Do you experience FA anxiety? How do you manage it? How has the anxiety affected your day-to-day life and/or your relationships with others? Have you been treated in a caring and respectful way?
Do you think food allergy support groups help the anxiety? Do they make it worse? Is it a little more complicated?
How about FA articles/studies on anxiety? What do you think about those articles/studies?
Can allergists diagnose anxiety? Can mental health professionals truly understand the FA life and how some behavior (that may first appear to be over-the-top) might have a rational basis?
Have you ever been unfairly accused of being anxious?
Is some anxiety healthy for those with FA?
Do docs take our concerns seriously?
Are we sometimes being unreasonable?
Etc.
Clearly this stuff touches raw nerves. Maybe it's just me. :hiding:
How has the anxiety affected your day-to-day life and/or your relationships with others?
my allergies affect them. I don't think my anxiety directly affects them.
Have you been treated in a caring and respectful way?
treated by who? I don't understand.
Have you ever been unfairly accused of being anxious?
My answer to that would probably change based on my mood.
Are we sometimes being unreasonable?
No idea what that question means.
Give you a hug and take you to dinner?
Are we sometimes being unreasonable?
No idea what that question means.
I guess people could read into this ? in different ways. For example, unreasonable in
accommodations we ask for. Unreasonable in the sense that maybe our anxiety has crossed over
from being rational and balanced to unhealthy. Unreasonable in what precautions we take to avoid allergens. Etc.
Some of it is the conscious awareness of what it takes to deal with an allergic reaction.
And while you are at it, go and reassure all the parents and adults who are dealing with allergies so severe they don't even tell their allergist half of what goes on because they have already been told it's "impossible".
I suspected a particular problem that is both common and obscure. In the wrong hands it might be regarded as asthma, and treated in cookie-cutter fashion.
I don't know for sure... but I do know that DD has had pretty severe asthma symptoms (probably really anaphylaxis, not asthma per se) dismissed by others as "a panic attack" or as "anxiety" and told to control her breathing and RELAX.
Not helpful if it's actually asthma or anaphylaxis in progress, since knowing that you're surrounded by people who are ignoring your sense of grave danger doesn't exactly make you feel better about your odds for survival. :-/
:dunce: Not sure why that aspect of things never seems to occur to others who preach "mind over matter" with this stuff.
On the occasion it is attempted it has never persisted. I'm too prepared.
It's hard for us as moms to get the kick when we're most vulnerable (our children's LIVES). That's a truth no matter the source of the threat.
I feel like we get hit in all directions. On the one hand we get studies telling us we are too anxious and on the other hand we get studies telling us we (parents) are not vigilant enough (e.g. the Mount Sinai study showing the rate of accidental ingestion of allergens is too high).
I find it frustrating to hear doctors say anaphylaxis is "rare" and parents should be "reassured".
The study authors certainly have noble intentions of this study reducing the anxiety faced by food allergic individuals or their caregivers.
For me, their findings convey the unlikelihood of a fatal anaphylactic reaction if appropriate management strategies are implemented, and provide me with some reassurance.
According to the peer-reviewed study, anaphylaxis very likely occurs in nearly 1-in-50 Americans (1.6%), and the rate is probably higher, close to 1-in-20 (5.1%).
We are our kids doctors for the most part.
I can fight these in a 504 scenario with hard counters. I can show the school empirically that no one is free of either anxiety or free of emotion in decision making, males and females alike. Can most parents do this without specialized knowledge on the fly during 504 process or at a doctor's office? A little unfair to the unsuspecting.
I don't know if I made any more sense but I'd be happy to later post definitions of bias types, external validity. I'll spoiler them to conserve space no point in everyone scrolling half a mile.
I was thinking more about this. I'm not sure if you had this study in mind, but these are 2 interesting blog posts about the recent "FA deaths are rare" study.
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"If food allergy deaths in food-allergic individuals are rare, do we change our ways?"
[url]http://foodallergysleuth.blogspot.com/2013/12/if-food-allergy-deaths-in-food-allergic.html[/url]QuoteThe study authors certainly have noble intentions of this study reducing the anxiety faced by food allergic individuals or their caregivers.
"FOOD ALLERGY: A LOT IS RIDING ON OUR TIRES"
[url]http://www.allergyhome.org/blogger/food-allergy-a-lot-is-riding-on-our-tires/[/url]QuoteFor me, their findings convey the unlikelihood of a fatal anaphylactic reaction if appropriate management strategies are implemented, and provide me with some reassurance.
(FWIW, I liked the way he framed this.)
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Also, ana itself does not appear to be rare:
"ANAPHYLAXIS IN AMERICA"
[url]http://www.aafa.org/display.cfm?id=6&sub=110&cont=882[/url]QuoteAccording to the peer-reviewed study, anaphylaxis very likely occurs in nearly 1-in-50 Americans (1.6%), and the rate is probably higher, close to 1-in-20 (5.1%).
Yes, these studies and others. I thought I saw another study that found a 40% rate of anaphylaxis among allergic children - maybe it was 40% had severe reactions?
“Your kid doesn’t have an allergy to nuts. Your kid has a parent who needs to feel special” Stein blamed the epidemic on overreporting, then found out the hard way when his own son suffered anaphylaxis to tree nuts.
I can fight these in a 504 scenario with hard counters. I can show the school empirically that no one is free of either anxiety or free of emotion in decision making, males and females alike. Can most parents do this without specialized knowledge on the fly during 504 process or at a doctor's office? A little unfair to the unsuspecting.
I don't know if I made any more sense but I'd be happy to later post definitions of bias types, external validity. I'll spoiler them to conserve space no point in everyone scrolling half a mile.
No rush TT - I hope you are enjoying the holidays. I'm just taking this thread in.
Are there any simple strategies to nip the "mom is just anxious" thing in the bud that you could share so the rest of us could keep them in our back pocket? I've only had this problem with a couple of people, but once it gets started, it seems it can snowball.
Yes, that explanation made more sense to me. Thanks.
Bottom line, I find it unhelpful to get angry. I wouldn't be ANGRY if my cat were unable to unlock the deadbolt if I locked myself out of the house, after all. Ignorance isn't malevolent. Mostly, with food allergies, ignorance is fueled by two things: 1. previous anecdote that is counter to what they are hearing from me, and/or 2. sound bites or media reports from research studies that offer an "average" snapshot. The latter is only helpful if your experience happens to be roughly average. Otherwise it is distinctly UN-helpful.
But I have never ever had a person that didn't-- eventually-- see it my way.
"What's the big deal?" an aunt asked about their food patrol efforts. "The big deal," she replied, "is that we end up at the hospital" – should eggs or tree nuts wind up on or near their daughter's plate.
When it comes to educating and convincing others about the imperatives that accompany food allergies, "it is constantly an uphill battle," Seymour says.
This paper reviews the relationship between anxiety and anaphylaxis in children and youth, and principles for managing anxiety in the anaphylactic child and his or her parents.
Other children continue to avoid certain foods despite a negative food challenge to those foods [25]. Repeating food challenges is reassuring in some but not all cases [25].
A principal who participated in an exploratory study to ascertain the extent and sources of stress among school principals realized the apparent isolation and lack of support felt by a significant number of school principals. Argues that the high incidence of anxiety and depression among principals is in large measure related to the insistence on educational administration being a technical activity. Concludes with an appeal for a new notion of educational administration and raises a number of issues for further research.
OBJECTIVE--To identify sources of job stress associated with high levels of job dissatisfaction and negative mental wellbeing among general practitioners in England. DESIGN--Multivariate analysis of large database of general practitioners compiled from results of confidential questionnaire survey. Data obtained on independent variables of job stress, demographic factors, and personality. Dependent variables were mental health, job satisfaction, alcohol consumption, and smoking. SETTING--National sample of general practitioners studied by university department of organisational psychology. SUBJECTS--One thousand eight hundred seventeen general practitioners selected at random by 20 family practitioner committees in England. INTERVENTIONS--None. END POINT--Determination of the combination of independent variables that were predictive of mental health and job satisfaction. MEASUREMENTS AND MAIN RESULTS--Women general practitioners both had job satisfaction and showed positive signs of mental wellbeing in contrast with other normative groups. Conversely, male doctors showed significantly higher anxiety scores than the norms, had less job satisfaction, and drank more alcohol than their women counterparts. Multivariate analysis disclosed four job stressors that were predictive of high levels of job dissatisfaction and lack of mental wellbeing; these were demands of the job and patients' expectations, interference with family life, constant interruptions at work and home, and practice administration. CONCLUSIONS--There may be substantial benefit in providing a counselling service for general practitioners and other health care workers who suffer psychological pressure from their work.
The extent to which a doctor or health professional can make a valid assessment of a patient's quality of life, anxiety and depression was investigated in a series of cancer patients. Doctors and patients filled out the same forms, viz. the Karnofsky, Spitzer, Linear Analogue Self Assessment Scales and a series of simple scales designed for this study, at the same time. Correlations between the two sets of scores were poor, suggesting that the doctors could not accurately determine what the patients felt. A further study examining the reproducibility of these scales demonstrated considerable variability in results between different doctors. It is concluded that if a reliable and consistent method of measuring quality of life in cancer patients is required, it must come from the patients themselves and not from their doctors and nurses.
“Dealing with Jacob’s cancer was less stressful, and easier, than dealing with his food allergies.”
Yup. I said that. Yes, It is a strong statement.
Ultimately, though-- that is about "credibility" via a person's credentials/bona fides.
This is where I roll out my professional credentials and turn into
Professor-Mom
(in a discipline that many educators and physicians alike found, well-- scary.)
This doesn't work awesomely well on DH, of course, or on my family, because familiarity breeds contempt, as it were.
But it sure works a treat on relative strangers, even those that nominally have power positions over me.
My view is there's no one way to do this. You pace with the people and obstacles (see signature below), and we're all capable of it with our preferred methods and strengths. And where we need help that's where we support one another. I trust in specific qualities in specific persons.
Where do we go for links? See what I'm saying? I have both trust and faith that you can find resources with exquisite precision.
“Why couldn’t Sabrina have had this reaction in front of our non-allergy friends?” asked Layne, of Norwell. “We know they think we’re crazy for being so vigilant.”
some parents say they face disbelief that their children’s allergies exist at all
“It makes it harder because people think we’re all misdiagnosed, that we’re hypochondriacs,” Francoeur said.
39 food-allergic children aged 8-17 years and their allergists separately completed the Screen for Child Anxiety Related Disorders (SCARED), a validated questionnaire. The 5 participating allergists attempted to estimate their patient’s responses. We analyzed the differences between patients’ and allergists’ reports.
the correlation between clinician and child responses remained insignificant
Do you think food allergy support groups help the anxiety? Do they make it worse? Is it a little more complicated?
Conclusions: Kids With Food Allergies Foundation online resources influence users' behavior, provide valued information and support, and may have a role in the spectrum of childhood food allergy care as a source of information and stress alleviation.
some degree of anxiety can be adaptive as it plays a role in patients being less likely to take risks. However, in cases where the degree of anxiety has become debilitating, imposes unnecessary restrictions, and/or leads to daily impairment of activities, then it has become detrimental.
parental anxiety may decrease as other caregivers of their child demonstrate awareness, competence, and understanding in managing food allergy.
but most of them have medical backgrounds (nurses and emt's), so they aren't going to intentionally "test" by exposing.
One certainly HOPES not.
But I'm here to tell you that in fifteen years, man, have I ever been SHOCKED by people that I know well so failing the Captain Obvious test on that one.
Unless you live it, truly "getting it" is a limited and fairly binary thing.
My family and I were talking about this the other day-- it seems to be a binary yes/no condition that can fail on either of two counts:
a) gets it emotionally-- that this is your reality-- and WANTS to understand and care for you/yours-- no questions asked. Would NEVER challenge you about your allergy or your stated needs, but often still wants to include you and share with you.
b) gets it intellectually/cognitively and recognizes risks adequately-- understands cross contamination, brand specificity, shared lines, etc. etc. etc. and also understands-- TRULY understands-- that anaphylaxis can kill, and how.
I've found that most people in my life (about 90% of them) fail on some combination of the two things. Usually, the overconfident ones are good on point a, but clueless with b. They're the ones you should NOT trust, no matter how earnest and loving they are, no matter how many times you've explained things to them. Problematically, they are often extremely frustrated that you won't accept their cooking. They can't get it well enough. The other kind tend to be where the medically/scientifically trained people fall. Oh, they GET it all right. Academically. But they think that this is someone ELSE's problem. Not your problem. YOU, they think is over-reacting and probably just needs to be jolted out of your doom and gloom. They'd be willing to help there, because they know better than you do. Really, they'd be doing you a FAVOR to show you that you really are overly worried about being part of that group when you aren't... by, you know, demonstrating that the worst that could happen is SO minor... Being scientifically/medically trained where you aren't, see.
That group gives me the willies. Because they can give every sign that they are 150% trustworthy, even when they aren't. They should know better (and they do-- as noted, with "those poor unfortunate people affected by this awful thing"); they just don't believe that YOU are in that group. They may think that YOU are an attention-seeker, maybe even a helicopter mom sliding toward Munchausen in your bids for attention.
Yes, I know this isn't so. I'm a member of the "my family has believed that I might have a psychiatric disorder because of my child's FA's" club. But I can assure you that those people ARE out there. They are extremely dangerous. Go with your gut-- if you don't trust someone that your brain says you SHOULD trust, there's usually a GOOD reason. It may be in microexpressions of disbelief, etc. as you've talked to them or something like that. Most of them have some kind of 'tell' that they aren't buying your particular narrative. At that point, being MORE emphatic only makes them dig their heels in, and you're much better off just not entrusting the food allergy to that person until they come to you, sheepish and apologetic (or give another indication that they've had their Come to Jesus moment without YOU in an ambulance).
KWIM?
My DH calls this a "civilian misunderstanding" of sorts-- they can't get it because they don't live it.
I think anxiety is often related to severity of past reactions, but not always. Those who have seen their children have the most severe of reactions are naturally going to have anxiety and maybe some even have PTSD from the experience.
I had a stray thought the other day that what medicine is focusing on is trying to tinker with our coping mechanisms by constantly measuring them and pronouncing them insufficient. Would the answer then be more support? In real terms? Or rather, it's not the condition alone that is so unmanageable but that support to cope is insufficient.
Who should measure quality of life, the doctor or the patient?QuoteThe extent to which a doctor or health professional can make a valid assessment of a patient's quality of life, anxiety and depression was investigated in a series of cancer patients. Doctors and patients filled out the same forms, viz. the Karnofsky, Spitzer, Linear Analogue Self Assessment Scales and a series of simple scales designed for this study, at the same time. Correlations between the two sets of scores were poor, suggesting that the doctors could not accurately determine what the patients felt. A further study examining the reproducibility of these scales demonstrated considerable variability in results between different doctors. It is concluded that if a reliable and consistent method of measuring quality of life in cancer patients is required, it must come from the patients themselves and not from their doctors and nurses.
The experts say well-meaning parents often say too much, too soon to their children about the risks of food allergies. The result: more and more kids with allergies – and anxiety. This special report, first published in Allergic Living magazine in 2008, explores the line between caution and fear.
Editor’s Note: After Allen Frances and Robert Whitaker spoke recently at the Society for Ethical Psychology and Psychiatry conference in Los Angeles, where they had a brief debate, Frances wrote to Whitaker suggesting that they should continue this debate in print. They do so here.
6. Manage your own anxiety. Children are very perceptive and if they sense you are scared, that fear will be transferred to them. Part of this is allowing them to be around their allergen from a young age so they can learn how to function, even with a peanut in the room.
"If you have a genuine problem that you can't solve, that's not actually an anxiety disorder," says Margaret Wehrenberg, Psy.D., author of three books on anxiety management.
Others, Baer claims, have looked at the survey's results and responded that, well, of course these women are anxious. "That's the point," she said, "That psychiatry has gone so far... that they're confusing what's happening in every day life with mental disorder."
Baer works with her colleague Jerome Wakefield's definition of a mental disorder, which says that for something to qualify as pathological it must both be harmful to the person and be due to the failure of some internal mechanism in the mind -- in other words, a dysfunction.
"The 'dysfunction' requirement," he wrote in his seminal critique of the DSM-III, "is necessary to distinguish disorders from many other types of negative conditions that are part of normal functioning, such as ignorance, grief, and normal reactions to stressful environments."
"We have to be careful if we suggest to people, 'Oh you're disordered because you're feeling anxious,'" said Baer.
LINDSAY ABRAMSAUG 1 2012, 10:13 AM ET
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Overlooking socioeconomic conditions and jumping to a psychiatric diagnosis can prevent us from addressing the real issues behind anxiety.
RTR2Z3W6main.jpg
Lucy Nicholson/Reuters
The list of practical and existential worries that keep mothers up at night runs long. They worry about their children getting hurt or killed in an accident. They worry that their children will not be happy and, on a lesser scale, that they will not be socially and academically successful. They worry, I'm sure, that they stay healthy, that they do the right thing as tricky situations arise, and their children be, overall, good people. They are often more worried about many of these things than their own children are.
For poor mothers, the usual worries are necessarily compounded by life's more immediate realities. Following the families of almost 5,000 children in the earliest years of their lives, the 2011 Fragile Families and Child Wellbeing Study identified poverty not by household income, but as a manifestation of telling life events. Those included telephone service being disconnected, not being able to pay full rent or mortgage, not being able to pay utility bills, accepting free food, or having to move in with other people due to financial reasons.
When poverty is looked at as a series of problems that must continuously be solved, the worry, one would presume, is continuous. It may very well be extreme, and disruptive. It might even go so far, the data suggests, as to be pathological.
Anxiety seen in poor mothers is caused by poverty itself, not mental illness.
"If you have a genuine problem that you can't solve, that's not actually an anxiety disorder," says Margaret Wehrenberg, Psy.D., author of three books on anxiety management.
And yet, when Fragile Families administered a standard diagnostic interview for Generalized Anxiety Disorder (GAD), it found that the psychological condition was extremely common among the poorest mothers represented in its sample. This piqued the interest of Judith Baer, Ph.D., an Associate Professor of Social Work at Rutgers University. How was it, she asked, that the women having the most financial difficulty were the most likely to be diagnosed with GAD? She wondered: do these women truly have the disorder?
Baer took Fragile Families' data and subjected it to a secondary statistical analysis that looked specifically at the relationship between poverty and diagnosis. Her results indicated that mothers who received free food had a 2.5 times greater chance of being diagnosed as having the mental disorder. Odds were 2.44 times higher for mothers who had problems paying their utilities, and 1.9 who those who had, out of necessity, moved in with others.
She and her team of researchers concluded that the anxiety seen in poor mothers is caused by poverty itself, not mental illness.
GAD is defined by the Diagnostic and Statistical Manual (the soon-to-be updated DSM-IV-TR, last revised in 2000) as "excessive anxiety and worry (apprehensive expectation), occurring more days than not for at least 6 months, about a number of events or activities (such as work or school performance)." Diagnosis requires the presence of three or more symptoms from a list comprised of: restlessness, being easily fatigued, difficulty concentrating, irritability, muscle tension, and sleep disturbance.
As one public health outlet offering counsel to sufferers of GAD says it, "You may feel like your worries come from the outside -- from other people, events that stress you out, or difficult situations you're facing. But, in fact, worrying is self-generated. The trigger comes from the outside, but an internal running dialogue maintains the anxiety itself."
In a "radical conceptual shift" from the former DSM-III criteria, claims Baer's article, this definition failed to include "an evaluation of the social contextual environment in which symptoms occurred." This means that when the mothers surveyed by Fragile Families were diagnosed in accordance with the DSM standards, their social and economic backgrounds were not taken into account.
Others, Baer claims, have looked at the survey's results and responded that, well, of course these women are anxious. "That's the point," she said, "That psychiatry has gone so far... that they're confusing what's happening in every day life with mental disorder."
Baer works with her colleague Jerome Wakefield's definition of a mental disorder, which says that for something to qualify as pathological it must both be harmful to the person and be due to the failure of some internal mechanism in the mind -- in other words, a dysfunction.
"The 'dysfunction' requirement," he wrote in his seminal critique of the DSM-III, "is necessary to distinguish disorders from many other types of negative conditions that are part of normal functioning, such as ignorance, grief, and normal reactions to stressful environments."
"We have to be careful if we suggest to people, 'Oh you're disordered because you're feeling anxious,'" said Baer.
She gives the example of her own reaction to driving on the New Jersey Turnpike. The road is huge, busy, and crowded with 18-wheelers. She often becomes anxious. And because she is anxious, she drives more carefully than she otherwise might. Anxiety can go so far as to cause paralysis, and were it to prevent one from being able to do what it takes to get from point A to point B, that would make it a disorder.
But, insists Baer, "It's not as if these things are nefarious mechanisms that are in us." A normal amount of anxiety serves innate purposes in terms of our survival.
"Psychiatry has gone so far that they're confusing what's happening in every day life with mental disorder."
The claim that poor mothers are more likely to suffer from GAD, then, is in Baer's opinion the diagnostic equivalent of a therapist talking to someone behind the wheel and, ignoring the high speeds and the trucks blaring past. Then concluding that there's something wrong with them because they seem distressed. The danger of pathologization - calling something a disease when it may not be - is, in this case, that we end up mistakenly ignoring treatable context. With psychiatrists increasingly shifting away from talk therapy, that may mean an increase in prescriptions for poor women when what they really need is social support.
"A therapist would say that a real problem needs real help," says Wehrenberg. She suggests that a diagnosis can be a way of directing attention toward a patient that can lead to help through counseling and perhaps broader social services. But going about things in this way keeps the conversation in medicalized terms instead of focusing it on the social and economic roots of anxiety.
Abstract
This paper addresses generalized anxiety disorder in poor families and argues that DSM definitions have led to an expansion in the domains of what is considered disorder. Social factors, which are importantly involved in many samples used to study GAD, have been overlooked. This was a secondary analysis of data from the Fragile Families and Child Wellbeing Study (N = 4,898). The findings confirmed that the poorest mothers had greater odds of being classified as having generalized anxiety disorder. We also conducted a structural equation model. Our findings suggest that anxiety in poor mothers is not psychiatric, but a reaction to severe environmental deficits. Thus assessment and interventions should be targeted at the environmental level and diagnostic labels should be used judiciously.
This is the first review, to our knowledge, that has systematically assessed the literature on disease-specific QOL tools for food allergy.
Healthcare workers should be aware of the impact of food allergy on an individual’s life and their families.
Tweeted by @Aller_MD
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"A brave new world – ‘research with’ not ‘research on’ patients"
[url]http://blogs.biomedcentral.com/bmcblog/2014/05/20/international-clinical-trials-day-2014/?utm_content=buffer0e6f1&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer[/url]QuoteSince the recognition and acceptance of patient and public involvement, there has been a rapid accumulation of evidence regarding its worth and it has been implemented in many health-care systems across the globe.
Tweeted by @HeartSisters
"When you fear being labelled a “difficult” patient"
[url]http://myheartsisters.org/2012/12/09/labelled-a-difficult-patient/[/url]QuoteWorse, doctors may even slap the term “anxious female” on the patient’s chart, virtually guaranteeing subsequent misdiagnoses and dismissals during future visits.
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Tweeted by @HeartSisters
When your doctor mislabels you as an “anxious female”
[url]http://myheartsisters.org/2012/06/04/anxious-female/[/url]QuoteResearchers also found that the presence of stress shifted the interpretation of women’s chest pain, shortness of breath and irregular heart rate so that these were thought to have a psychological origin.
By contrast, men’s identical symptoms were perceived as cardiac whether or not emotional stressors were present.
I now had ‘proof’ of my son’s allergy
dozens of stories about grandparents, parents, uncles, aunts, sisters, brothers and in-laws denying and ignoring their allergies, disputing them, and worse, triggering reactions that could be life-threatening.
often presumed the allergic person or parent was overreacting, neurotic or a control freak when describing the seriousness of this condition
At the time, I was in the throes of a dark and debilitating depression following my heart attack
In other words, let’s not make a fuss. It’s not that bad. Don’t whine. Don’t complain. Don’t draw attention to yourself. Smile sweetly and try to act normal.
Maybe the doctor’s notes in our charts will start reflecting the truth instead of the fiction we help to spread by pretending to be “Fine, just fine”.
A mother who took her baby to doctors claiming he had a milk allergy was dismissed as an anxious first-time parent
But when little Nathan Hudson began to choke and was rushed to hospital by ambulance it was only then that a paediatrician finally diagnosed an allergy, as well as reflux.
Her mother is terrified.
Think of a good 504 plan as being a STOOL. There are basically three legs (sometimes four) to a solid 504 plan. By 'legs' here I mean input streams of expertise.
a) MEDICAL-- this is where your physician comes into things(and to a lesser extent, a school nurse... and yes, I DO mean 'lesser' extent, because this is about medical diagnosis and practicing within one's professional scope of expertise. Nurses are not allergists.) The medical stream is the one offering advice on how much exposure is "okay" or not, what kind of responose is appropriate under which conditions (ie-- for a non-specific symptom of asthma, does this child get epinephrine? Or an inhaler?)
b) DAILY REAL-WORLD MANAGEMENT AND RISK ASSESSMENT/RESEARCH-- this is us. Allergists are medical experts, but they are NOT the experts at navigating the world with a particular child and keeping him/her out of anaphylaxis. WE ARE.
c) SCHOOL OPERATIONS-- this is school staff. They know layout, they know logistics of first-response, they know their staffers, they know the culture of the school community.
d) (possible) Special Education needs-- can be GT/SpEd needs, but this will have to dance with the other three.
NASN new position statementNASN has consistently ticked me off over the past ten years, and this document is a shining (glaring?) example of why. In the one instance, they make statements of OPINION (as in the first quote above) with zero evidence to support those statements, and then later on make stinkers like this gem:QuoteEntering school or changes in the school environment are stressful events, and many parents view these events as opportunities that increase their child’s chance of exposure to allergens (Roy & Roberts, 2011).
Uhhhh... NO. We don't "view" them that way-- they are that way. Evidence backs that up. Disruptions in routine and a lack of clear expectations and communication = disaster. Period. Several studies have said so.Think they'd listen to us?
[url]http://www.nasn.org/AboutNASN/ContactUs[/url]
No. I don't.
The reason is that there is language in this statement that is (deliberately, I should think) indicative that parents are, by definition, rather 'emotionally invested' to a degree that prevents any FA parent from objectively evaluating risk.
In other words, that parents are not "experts" in management (by definition) because they are parents. The reason that planning needs to include them is to make them FEEL more comfortable, and to make sure that the school gains their cooperation.
:-/
Until NASN begins to understand that its members would be well-advised to LEARN about management quirks from the parents, because those parents are quite often experts in that particular child's medical management by the time schools see those children...
well, I don't think that anything that a group of parents says to them is going to get through this kind of hubris, honestly. I hate to sound bitter, but there it is.
As parents, are we seen as true partners in the 504 process?
Re: Docs helping patients to surf the internetTweeted by @kevinmd
"Women’s right to vote and the e-patient movement"
[url]http://www.kevinmd.com/blog/2014/06/womens-right-vote-e-patient-movement.html[/url]QuoteAll of this may sound familiar to patients whose opinions are considered not worth hearing because, after all, they’re only patients, so what could they know?
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CM - if you don't want this quoted here, just delete this part of the post.
"Thresholds for Allergens being Established: For better food allergy labeling guidance"
[url]http://allergy.hyperboards.com/action/view_topic/topic_id/17461[/url]
Posted by CMdeux 12/10/10QuoteHe assumed that I was a 'typical' SAHM with a food allergic child... and was (in his mind, anyway) appropriately dismissive of anything I had to say.
I never really expected him to say, "Oh my gosh! I'm so sorry to have assumed you were an idiot-- you're right!" LOL.
But this brings me to a good point, which is that with many individuals engaged in research in the field, they DO NOT think that we are anything more than poorly-educated parents, probably hysterical and in need of patronizing platitudes so that we'll calm down and go away. Because, you know, that way the "scientists" can get back to the real job of doing "science-y" stuff. The subtext being "don't worry your pretty little heads about it, because you wouldn't understand anyway..."
Tweeted by @HeartSisters
"The Myth of Winning"
[url]http://www.6seconds.org/2014/08/19/the-myth-winning/[/url]QuoteIn our own heads and hearts, we make ourselves righteous, and we make them bad.QuoteOnce we move into conflict, everyone involved is tarnished. Everyone involved become become bloodied and hurt – either literally, or at least emotionally. Then our oppositional positions become increasingly entrenched.QuoteThe solution is paradoxical, and it might feel like a kind of surrender — but it’s not. The solution is to stand next to your opponent, and, ultimately, to make that person your ally instead.
the concept of stigma is being invoked to
Undermine patient empowerment
Resolve differences of opinion between patients and professionals as to need for mental health services in favor of the professionals
The panel members felt that the major barrier, for both physicians and patients, was the negative meaning and stigma attached to words implying the psychological domain, such as psychiatric, psychological, and psychosocial. The panel considered descriptive words that could encompass the range of fears, worries, and concerns of patients with cancer, and proposed the word distress because it could vary in severity from a normal response to a more significant level, consistent with a psychiatric disorder requiring intervention.
Thanks for not wishing food allergy on me so I might come & join you there on your forum, Karen! ;-)
If you have a medical illness and you're worried about it, that becomes a mental disorder.
I think that from the point of view of clinicians, it's important to be cautious in your diagnoses, don't jump to conclusions, don't make fancy diagnoses after a brief initial contact with patients.
fear that one teacher/waitress/boss who buys into food allergies being fake and therefore is just a little (or a lot) less careful than he or she needs to be to keep my son safe.
When half the population doesn't believe in food allergies (to the point that people are taking the time to search for phrases like "I HATE FOOD ALLERGY KIDS"), how well-placed is that trust?
Just because you’re paranoid doesn't mean they aren't out to get you
Just because you're anxious doesn't mean your food allergy isn't real or dangerous.
But there is a cruel paradox when it comes to mental disorders. While we chase the receding holy grail of future basic science breakthrough, we are shamefully neglecting the needs of patients who are suffering right now.
The question of which diagnoses are associated with social stigma is interesting to me
Mayo Clinic experts explain:
“Based on stereotypes, stigma is a negative judgment based on a personal trait— in this case, having a mental health condition.
The decision tool is called AYAS (Are You Actually Sick)
Does the patient have >2 medical allergies?
Gomerblog.com is strictly a satirical and fake news blog site.
So how do you know when a hypochondriac is really sick?
the only way you’re going to know that is to keep open the lines of communication with them
Our hard-wired tendency to prejudge is unavoidable, so we need to recognize it in order for it not to control us.
We cannot be too proud or stubborn to admit when our first thought is wrong. We have to keep listening.
One of the most serious concerns about tests that are commonly used despite important diagnostic accuracy issues is that an initial “normal” test may lead to misdiagnosis. No further tests will be ordered. Doctors like Duke University’s Dr. Pamela Douglas call this phenomenon “verification bias”.
people imagine worst-case scenarios in order to manage their anxiety. But what defensive pessimists do next is key: They come up with strategies to avoid having all of those bad things happen, thus ending up better-prepared and less anxious in the long-run.
2. Every emotion has a purpose. They give us messages about opportunities and threats. The “Emotoscope” offers many examples of the purpose of feelings.
The problem is two fold. Misattributing physiological symptoms to mental health diagnoses, further stigmatises those with psychological issues.
Secondly, this misattribution means that manageable, and potentially treatable, diagnoses may be overlooked and diagnosis delayed.
Does physician compassion influence patients’ anxiety levels?
WOMEN are moody. By evolutionary design, we are hard-wired to be sensitive to our environments, empathic to our children’s needs and intuitive of our partners’ intentions.
We have been taught to apologize for our tears, to suppress our anger and to fear being called hysterical.
People who don’t really need these drugs are trying to medicate a normal reaction to an unnatural set of stressors
Correll often tackles mental illness in her comics, including a detailed explanation of panic attacks and a sardonic take on those ubiquitous "Keep Calm" posters: "I can't keep calm and carry on because I have an anxiety disorder."
A Worrier's Guide makes light of serious mental health issues as well as the everyday angst that affects us all.
anything that brings us undue pain including abandonment, betrayal, rejection, being misunderstood, loss, and even a life-threatening illness.
She’s quick to point out, by the way, that she is NOT talking about occasional venting or processing of difficult emotions, which each of us absolutely must do once in a while for the sake of our mental health.
Instead, she’s talking about not “feeding your emotions so you stay stuck”.
OK, this really has to stop.
I've written countless articles about the failure of doctors to listen to their patients. Whether that failure comes from judgement (they're "just" an addict, they're "just" depressed, they're "just" malingering) or from arrogance (I know best, what would they know, I have the medical degree) I honestly believe it is the single most dangerous factor in our healthcare system.
Mental health patients are more likely to be misdiagnosed, less likely to be screened for cancer and diabetes, more likely to die and to die at a younger age because their problems are undetected or neglected.
conversations have to take place even if they are uncomfortable.
"I believe from honest talk comes good things," said Goldman.
why it has become so difficult for so many doctors and patients to communicate with each other
Even the most frustrated patient will come away with respect for how difficult doctors’ work is.
When she was five, her allergist espoused the opinion that sending her to school would be "work, but feasible." He simply didn't believe in aerosol-provocation of systemic reactions. I knew that he was wrong in DD's case, but no amount of MY opinion was going to budge him. So I bided my time, and let him SEE that I wasn't crazy or over-reactive. I graciously told him that we'd have to agree to disagree, because I knew what I'd seen. We did reach common ground in that he conceded that any environment which was THAT contaminated was probably an unacceptably high risk for eventual inadvertent ingestion anyway, and so it was a good sign to "vacate the location" even if he didn't think that inhalation was a real "risk." In and of itself, I mean. I must say that my DH's skepticism a year before that hadn't done much to help my relationship with the allergist at that point in time, either. Another story, that one. :-[
After four years of immunotherapy injections, he and his office staff had seen enough weird and impossible things from her that they believed me. Completely. Of course, I think that it also has helped that he now has had the personal, delightful experience of turning over a kid with about three times DD's threshold to a school setting, too... so he gets it now in a way that he seriously just couldn't wrap his head around previously.
.@DrDougMackMD now leading discussion surrounding false belief of 'airborne' peanut allergen from peanut butter causing reactions #CSACI
In this interview BPS Associate Fellow Dr. Khadija Rouf consultant clinical psychologist from North and West Oxfordshire Adult Mental Health Team, Nuffield Health Centre discusses her research into the psychological challenges for children and parents living with a severe food allergy.
ouch. Presidential Candidate Mike Huckabee Uses #Schizophrenia As A Slur, Gets It Wrong, by @ejwillingham - onforb.es/1HCCOk1 @Forbes
Mischaracterizing schizophrenia and attempting to use it as a slight, as Huckabee did in his remarks, does nothing to diminish either the misunderstanding or the stigma
He didn’t ask if I was scared. He didn’t ask if I was anxious or depressed about this news or the prospect of brain surgery to fix it. He gave me the facts.
Children with food allergies may experience anxiety. Worries and fears can come up for many reasons.
Join Dr. Gianine D. Rosenblum and Kids With Food Allergies to learn about anxiety coping strategies. Dr. Rosenblum, a psychologist, specializes in the treatment of trauma. She is also the mom of a teenager with food allergies.
I waited because I felt shamed into feeling like an hysterical female, shamed into feeling like I was just anxious. JUST anxious. Like anxiety itself is something that isn’t real when we know that it is. Like anxiety is something to be ashamed of or embarrassed by. When our lives, bodies, souls, are in distress, anxiety is a likely outcome. Wear it proudly. It might save your life one day, and it can be treated, too.
He is not the first doctor to do this, and it is not always men, either.
There's not a person reading this who hasn't had some sort of interaction with the healthcare system, being on the receiving end, the patient side, who hasn't felt judged or labeled or misunderstood by the person providing the care - being labeled (formally or otherwise) as a difficult patient/parent, being non-compliant, having a mental health issue because we simply don't agree. How do we change that stigma, make patients feel more like partners, going in to consult with a subject matter expert but being of equal importance in what they bring to the table, their experience.
Parents can now turn to a new resource to help them navigate through what they should and shouldn't say if their kids are depressed or are faced with mental health issues.
The young people said phrases like, 'it's just a phase or you'll get over it,' or 'don't worry so much you are only a kid,' aren't helpful.
So a huge question for allergy practices has become, not just how to test, find accurate diagnoses, and counsel food avoidance, but how to assist patients and parents so they don’t become captives to anxiety, and can learn to live well with the disease. Some large U.S. and European food allergy clinics are bringing psychologists such as Herbert on board to help families achieve that emotionally healthy state through modern techniques, which range from extremely frank discussion to wellness and cognitive behavioral approaches.