Let's talk about anxiety

[LinksEtc]

Tweeted by @AllergyKidsDoc

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"Anxiety and Food Allergies"

Author: Irene Mikhail, MD

http://700childrens.nationwidechildrens.org/anxiety-food-allergies/

[twinturbo]

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.

Uh-huh. Except, it's never really "a peanut" it's the accumulated residue of daily PB in a classroom and dozens of other kids not washing their hands. I'll get right on that pesky low threshold my child has with my magic wand. 

Look, my kid watches PEANUTS. Has a box of bandages that reads PEANUTS. He can read and understand the difference between Charlie Brown and the gang from the legume without freaking out. But the residue issue for peanut butter is real, and when you have a known history of anaphylaxis from residue on other kids who have eaten PB it's a game-changer that you have to live with accordingly.

Can we stop pretending that anaphylaxis and allergic disease is not highly contingent on individual thresholds and allergens, whether or not they are super durable and can be at least partially denatured, unless or until there is an FDA-approved mediating medication for the prevention of anaphylaxis that the stimulus for appropriate concern and vigilance is omnipresent? When is the shine on bs about mentally conquering the allergy going to stop?

"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.

Change economic to environmentally triggered contact-to-ingestion for a child in a class full of his or her allergens. Or, aerosol depending on individual and form factor of allergen. Add in you never know when or where the allergen is going to crop up and must look for it in unexpected sources.

[twinturbo]

Scholarly article talked about in previous post. Unfortunately, not open access.

Is it Generalized Anxiety Disorder or Poverty? An Examination of Poor Mothers and Their Children

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.

SEM used. Wonders beyond wonders.

[LinksEtc]

Tweeted by @Aller_MD

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"Disease-specific health-related quality of life instruments for IgE-mediated food allergy"
http://onlinelibrary.wiley.com/store/10.1111/all.12427/asset/all12427.pdf?v=1&t=hvch8hxp&s=4f222d406a482bf709bdc5e826c8370715665222

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.

[LinksEtc]

Related topic:

If you were an allergy researcher ...

Tweeted by @Aller_MD

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"A brave new world – 'research with' not 'research on' patients"
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

Since 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.

[LinksEtc]

Docs helping patients to surf the internet

Tweeted by @HeartSisters

"When you fear being labelled a "difficult" patient"
http://myheartsisters.org/2012/12/09/labelled-a-difficult-patient/

Worse, 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"
http://myheartsisters.org/2012/06/04/anxious-female/

Researchers 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.

[LinksEtc]

"Family Food Feud: Relatives and Allergies"

http://allergicliving.com/2010/12/07/family-food-feud/1/

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

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Wanting proof, wanting a close family member to support me instead of giving me a hard time for listening to the allergist, wanting to make sure the family member was not going to test the allergy himself as he said he might ....

this is why I am so glad that we finally got an IOFC ....

it feels like a weight has been lifted off of my shoulders ... I know where we stand in terms of this allergy ...

it was not easy getting to this point, but it was worth it ... I no longer feel beat up on ...
and with everybody on a close enough page now, I feel dd is safer.

[LinksEtc]

"Looking good for your doctor's appointment: oui ou non?"

http://myheartsisters.org/2012/10/30/looking-good-cardiology/

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".

It's amazing how many of her heart posts seem to have relevance for those with FA.

How honest are we about how we are feeling?  How open should we be with others? 

That "don't make a fuss" attitude is how a lot of teenagers get into trouble with FA.

I trust our allergist and would be fine sharing any concerns if I had them. 

However, there have been other medical professionals with whom I felt it would be wiser to be more guarded with, to present a Has-It-Together-Mom-Who-Should-Be-Taken-Seriously image.  I hate to say that, really I do.  It's just that sometimes it's so important to have the focus be on physical symptoms ... sometimes it seems better not to feed the "anxious FA mom/patient" stereotype. 

For long-term relationships though, if you don't trust your physician enough to discuss mental health concerns, it might be worth trying to find a new physician where you feel that it is "safe" to be completely open & honest.

[CMdeux]

I love that set of observations, Links.  That is SO true.   


The sense of discouragement that I see in my DD comes from her sure and certain knowledge that she is playing with her life if she doesn't "make a fuss" among her friends... and the conflicting voice telling her that NOBODY is worth that much trouble, and that she isn't worth it to others...

Oh, it is SO sad.  I see, now, how teenaged girls, in particular, can get themselves into anaphylactic reactions that kill.

[LinksEtc]

Tweeted by @sarahjchapman

"Mother dismissed by GP as 'anxious first-time parent' discovers her son has a milk allergy when he starts CHOKING"

http://www.dailymail.co.uk/health/article-2737811/Mother-dismissed-GP-anxious-time-parent-discovers-son-milk-allergy-starts-CHOKING.html

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.

[CMdeux]

Honestly, that sounds a bit... er... familiar.

[LinksEtc]

"VOLUNTARY GUIDELINES FOR MANAGING FOOD ALLERGIES IN SCHOOLS AND EARLY CARE AND EDUCATION PROGRAMS
WHAT THE PEDIATRICIAN NEEDS TO KNOW"

http://tinyurl.com/qeorwjs

Page 11 - Starting School with a Food Allergy

Her mother is terrified.

Sigh.  For sure, this is sometimes true ... but how about other examples of a mother who understands allergies & risk, is a partner with the doc, & is a strong advocate for her child?  Do docs understand how this "anxious mom" thing has perhaps gone too far?

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504 index - 504 Plan Basics



How much weight does letter from allergist hold in 504 planning?

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.

[LinksEtc]

504 index - School Nurse

NASN new position statement

NASN 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:

Entering 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?

http://www.nasn.org/AboutNASN/ContactUs

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.

The last 2 posts ... I added bold/blue to highlight some of CM's thoughts.

CM ... if you mind, just let me know.

As parents, are we seen as true partners in the 504 process?

[LinksEtc]

If you were an allergy researcher ...

Re: Docs helping patients to surf the internet

Tweeted by @kevinmd

"Women's right to vote and the e-patient movement"
http://www.kevinmd.com/blog/2014/06/womens-right-vote-e-patient-movement.html

All 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"

http://allergy.hyperboards.com/action/view_topic/topic_id/17461

Posted by CMdeux  12/10/10

He 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..."     

[LinksEtc]

ok ... so I feel a bit strongly about a few topics.   


I'll put this here because I don't think these things have to be a battle ... let's do a better job communicating.



Communication and/or negotiation skills

Tweeted by @HeartSisters

"The Myth of Winning"

http://www.6seconds.org/2014/08/19/the-myth-winning/

In our own heads and hearts, we make ourselves righteous, and we make them bad.

​Once 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.

​The 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.