Let's talk about anxiety

[CMdeux]

Honestly-- WE thought that some of the things that we discovered we have to do... were completely wacko, over-the-top things.  And this bearing in mind that DH and I both have food allergies, and did well before we had DD.  This bearing in mind that both of us have gotten epinephrine and steroids-- or at least been familiar with anaphylaxis in an immediate family member to remember ana-kits.

So yeah-- I have some sympathy for people who ask "why not just teach her what she can't eat?"

What I lack sympathy for is their insistence on that attitude once I've patiently explained what "contact and aerosol sensitivity" means and how it works.

[twinturbo]

FARE has done a mostly great job IMHO getting the word out. But in many ways I think we've been set up for the worse by "the experts" and orgs that have released damaging statements or ridiculous studies about how the most sensitive of sensitive kids don't exist, that we have false sense of security, don't let the allergies define you, etc.

All I'm saying is think about it. What if studies started looking at allergic disease and anaphylaxis specifically calling attention to the deficit of mediating medications instead of ineffective issues like how we feel? What if FARE started focusing on the most vulnerable segment of FA kids front and center? There's a narrative here of experts, studies and orgs that paint an unflattering picture to the public in the event that it is even acknowledged that we exist.

Essentially, we're constantly fighting an established stereotype.

[LinksEtc]

"Can Training Improve Allergists' Ability To Accurately Identify Anxiety In Children With Food Allergy?"

Melissa Rubes, Anna Podolsky, Nicole Caso, Rachel Annunziato, Amanda L. Cox, MD, Jennifer S. Kim, MD FAAAAI, Anna H. Nowak-Wegrzyn, MD FAAAAI, Julie Wang, MD FAAAAI, Scott H. Sicherer, MD FAAAAI, Eyal Shemesh

https://aaaai.confex.com/aaaai/2014/webprogram/Paper11627.html

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

[LinksEtc]

Do you think food allergy support groups help the anxiety?  Do they make it worse?  Is it a little more complicated?

"Understanding The Role Of Online Resources For Childhood Food Allergies"
David Goese, Ves Dimov, MD
https://aaaai.confex.com/aaaai/2014/webprogram/Paper12699.html

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.

[LinksEtc]

"Part 1: Pertinent Food Allergy Education in a Pediatric Ambulatory Care Setting for the
Newly Diagnosed Patient"

http://jaa.sagepub.com/content/3/4/146.full.pdf

Page 157

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.

[lakeswimr]

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 think reading fatality stories can increase anxiety and I generally recommend avoiding doing so if possible. 

I agree that anxiety doesn't serve a good purpose once a system of safety precautions are in place but of course that's not how all human emotions work. 

Knowing that most ana self resolves is one thing that helps me a lot.  Odds are on our side, which is a good thing. 

I was recently at an event that was supposed to be free of certain allergens.  Not everyone got the word and people were walking around eating and touching things that DS was also going to touch.  He had a reaction at this same place in the past in a somewhat similar situation.  I told him what was happening, not to touch his face, I spoke up and people in charge announced that everyone should wash hands after eating and be careful so we don't have any allergic reactions.  (That helped but not everyone washed and people had already started touching everything.)  I did feel a bit anxious but more than that I just felt angry.  I was not angry at the people because they obviously had not gotten the word.  I was angry at food allergies.  I just felt so tired of dealing with them.  I knew that DS was likely going to be fine.  I also knew that there was a chance he could end up at the ER again as he did in the past from contact ingestion at that very same place.  It was supposed to be a fun day and instead I was on life guard duty.  I want to just be carefree and enjoy my life and not have to think about things like that.  I don't like that food allergies made me feel so irritable that day.  I don't want to have that negative energy in me.  It blocks me from enjoying other people fully and enjoying situations I'm in.

Maybe it is growth that I wasn't anxious so much as angry, though.  lol 

(And we are talking about how to prevent this from happening in the future.)

[CMdeux]

lakeswimr, I experienced something very similar this week-- it was CLEARLY a very, very dangerous situation, and I was obviously very concerned for my DD's safety-- she left when she began experiencing asthma and itching/running nose/eyes-- but mostly I, too, was just angry at food allergies in general.  ANGRY that something so inconsequential as another person's momentary thoughtlessness has such power over her and apparently always will. 

[lakeswimr]

Thanks for the reply, CM.  Sorry that happened and sorry she had a reaction and had to leave. 

I was just feeling that I wanted to be a regular person and not have to deal with all that stuff and I got angry about it.  I know there are so many worse things we could be dealing with.

I remember talking with my father when he first really understood FAs and we were in a restaurant at family event.  The waitress brought out a whole tray of sprinkled covered ice cream and all the kids and my dad said, "Oh!  Look at that!"  I had to point out that DS and also my nephew would not be able to eat that.  My dad thought it was horrible that the boys couldn't have it and I told him it was no big deal.  It was just a fact of life for us and I had back up treats for DS and my nephew.  Later my dad told me he did not agree that it was no big deal.  He said, "if you eat the wrong thing you could end up having a reaction and have to hope the epi pen works.  That IS a big deal!  That's HORRIBLE!"  Usually I do not agree with this.  Usually I just live my life and do the things that are routine now and focus on what DS can eat, etc but last week I guess I was thinking like him and feeling sorry for myself and for DS. 

The week of that event I wrote about with the nut and peanut butter cookies we had also had another activity a few days before that was supposed to be food-free but was not.  DS was given allergens to eat (he didn't eat them) and to handle and play a game with by a person I have reminded multiple times of his allergens.  As a result that place has decided to go food free for the activities since there were multiple mistakes this year.

I'm back to myself now.  I'm not upset.  It is what it is. 

[LinksEtc]

   CM & Lakeswimr

[LinksEtc]

If it's ok with CM, I'm going to put this here ...


New to all of this--DS SFA reaction last night?

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.

[CMdeux]

 

Anyone that needs you to have a near-death experience in order to believe you isn't a "friend" to you. 

[LinksEtc]

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. 

DD's first rxn was years ago, and the details are fading somewhat from memory at this point, but it was one of the few times as a parent that I felt scared.  I remember that feeling ... it doesn't haunt me, it didn't scar me, but it made an impression that this was something serious.  Luckily that rxn resolved by itself and soon after she was diagnosed by an allergist.  We have not had a very severe rxn since.

The nuts & bolts of the allergy (avoidance, rxns, etc) have not been the hardest thing for me to deal with.  It's been the emotional stuff that has really cut deep.  Having a close family member that was not supportive for years, being told by some people that I was just being anxious, getting ridiculed, facing anger, being made to look crazy.  Don't get me wrong ... most people (friends, family, school employees, docs, etc.) have been great. 

I don't know.  We all have our different experiences.  I guess I'm mostly ok now ... I've moved passed that stuff, I'm not angry anymore.  I can't say that I have totally forgiven  ,  but I harbor no ill will.

If allergists and mental health professionals teamed up and applied some of the more sophisticated research techniques TT referred to earlier in this thread, maybe that would benefit future FA families.

[twinturbo]

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.

[LinksEtc]

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.

I don't know, but if the medical side wants to provide more support to us, I think they have to listen more closely to us and realize that things may be more complicated than they first appear and that we all have different experiences & concerns (although there do seem to be some common currents of concern/stress).

For instance, a person may be pretty comfortable with FA, but when they meet with a doc, maybe the parent/patient is having a bad day ... maybe they are stressed from other life issues like a move or a parent's sickness .... maybe there is a temporary issue like switching schools that is causing some temporary anxiety (not chronic) that would be easily rectified by making sure that the proper safety precautions are in place, maybe the patient/parent has a personality or condition like ADHD that could be misinterpreted as anxiety, etc.

When we go to allergists, we fill out questionnaires about FA, but usually not so much about worries/concerns/anxiety, yet some docs are quick to label and judge without ever even having a conversation about the topic first with the patient/parent.  Allergists' words carry a huge amount of weight so I think they have to be very careful with that responsibility. 

Some fun experiments could be designed where the same patient/parent goes to different docs presenting the situation and then the medical records are compared.  What do you want to bet that the way things are written differ greatly, especially regarding mental health issues like "anxiety" and how the patient/parent in general is perceived?      Research thread idea  ?

Build on this ...

Who should measure quality of life, the doctor or the patient?

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.

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ETA - I don't want this post/thread to come across as harsh.  It has helped me to work through some feelings.

Nobody is perfect (us patients, docs, etc.) ... I've made mistakes, I could have handled certain situations in a better way.  The main purpose of this thread is not to judge others ...

It's to more deeply understand FA anxiety, it is to share patient perspective, it is for us to support each other, and yes, a little venting is to be expected.

[LinksEtc]

Good article on food allergies and marriage


Have your child's food allergies impacted your relationship with your spouse?


Communication and/or negotiation skills


anxiety after a reaction-please tell me it gets better soon


New Study - Young Kids with FA's May Learn Helplessness


Mothers of food-allergic kids want more than menus from dietitians


Obsessing About Our Children's Health - and Keeping Ourselves Healthy

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"Your Child and Food Allergy Fear and Anxiety"
http://allergicliving.com/2011/11/30/your-child-and-food-allergy-fears/

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.

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Tweeted by @DrDuaneAllergy

"A Debate Between Allen Frances and Robert Whitaker"
http://www.madinamerica.com/2014/12/debate-allen-frances-robert-whitaker/

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.