Let's talk about anxiety

[SilverLining]

Give you a hug and take you to dinner?

  for me, that would be about as unsupportive as possible.  But, I get what you mean.

Mostly my immediate family has been very supportive.  When my husband went through a period of severe anxiety (following his own health scare) he was referred to a psychologist who turned it all into MY fault.  It wasn't, and eventually my husband realized it.  But that was a very difficult time for us.

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.

OK.  I think we are all probably unreasonable sometimes.  But I also think we may appear more unreasonable then we actually are.

Many here take precautions that I feel would be unreasonable for me to take.  And I take precautions others here don't.

[spacecanada]

I definitely experience food allergy anxiety and do what I can to avoid it, often keeping me at home or in safe places.  It can become quite limiting, particularly in social situations involving food.  I see anxiety in some children with allergies but not all.  It seems to depend on their threshold levels and their parents' attitudes towards the allergy.  Sadly, the parents who en

After a recent anaphylactic reaction (Epi, ambulance, hospital, biphasic), I suffered from short-term PTSD.  Thankfully, my GP is highly aware of food allergies and anxiety, and was quick to recognise the anxiety disorder.  According to her, a level of post-trauma stress is considered normal for severe reactions, and they won't do much for it unless severe symptoms last more than a month or there is threat to life (i.e. suicidal thoughts), much like any other anxiety disorder.  Can they understand food allergy anxiety - yes and no.  They can understand the mechanics of anxiety but not necessarily the nuances of food being everywhere.

Are we being irrational?  That one is really difficult to answer.  I see both ends of the spectrum regularly.  I can be highly anxious in certain situations because I have very low thresholds and anaphylaxic reactions to traces of traces.  Is that rational, probably.  But, the parent who had a blood panel done on her kid, with no reaction history, and believes them to be severely allergic to items on that test and demanding the classroom to be free of 26 different allergens and traces and the whole nine yards seems irrational to me.  Does the irrational behaviour of people with allergies, or intolerances for that matter, stem from misinformation, lack of current allergy education, or is it their will to remain ignorant or demand accommodations that aren't necessary?  Do we sometimes demand extra (sometimes unreasonable) precautions because we don't entirely trust the people we're asking them from?  This is a VERY complex topic.

Have I been treated in a caring and respectful way?  By most people, yes.  Have people taunted me, not believed me, and waved nuts in front of my face or tried to slip nuts into my food, yes, but those people are in the minority and I try to avoid spending time with them. 

Edited: abbreviated details to keep on topic.

[twinturbo]

For kicks some of you may want to take a look at FEMA's certification program for emergency management. In it the procedures are strikingly similar for FA management, but in the course (free for the taking but you must register with FEMA for an ID) it is referred to as preparedness, not anxiety. With my background it's a good match, especially if I went further with CATS, DTRA, and so forth. For me I don't do much different in allergen management than I did managing any other physical danger but one is considered positive job skill the other a personal weakness.

[CMdeux]

TT, that's what I consider so bemusing about this.  If I treat a food allergen the way that I would a toxic substance...  I'm considered paranoid... but in the lab, I am considered "prudent" by regulators.   Wacky.

[LinksEtc]

Spacecanada,

Did you mean to edit the last sentence of the 1st paragraph?

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I think we all need one big group  .  The views and experiences being shared here are from the trenches of FA life.

This is such a sensitive topic .... I started it, and I'm hesitant to personally jump in myself.

[booandbrimom]

Well, you guys know what I think since I spill my guts in my blog! 

I ask myself every single day why I'm not pushing harder to see where my son stands now. I have a new restaurant I think he could try - my husband and I both went in and talked to them and it seems o.k. I drive by it every day from work, so it would be simple to stop in and pick up dinner.

I don't do it.

Part of my hesitation is the subconscious anxiety I've been programmed to feel. Some of it is the conscious awareness of what it takes to deal with an allergic reaction. And yet, I have to balance both of those things against the possibility that I'm probably restricting foods that are perfectly safe at this point.

It's really screwed up. I know it. I do what I can do, and try to forgive myself for what I can't manage.

[CMdeux]

Some of it is the conscious awareness of what it takes to deal with an allergic reaction.

I'm really glad that you brought that up.  I feel really guilty about this sometimes, but I, too, have calculated this as part of my risk-benefit analysis of situations, and thought.....

ughhhhhh-- NO WAY do I have it in me today.  Some other time...

[Gray]

On second thought, I think that I should stay out of this thread.

[twinturbo]

The harsh truth is allergists/immunologists really have nothing to offer but challenges and EpiPen prescriptions on a broad basis at this point in time. For their branch of medicine it has also been one that has not gotten too far in developments, and the developments that have been made have been reversed more than once.

There's Xolair which is not economically feasible and still in refinement (see next generation CemX).
There's OIT, the best I've heard it put a dead end. Never made FDA approval for general roll out.

So what's left for them to modify? I'm guessing instead of being able to alleviate what they term anxiety through means that address the stimulus of that anxiety, they go for the anxiety itself while still advocating total avoidance. A lot of this is created when it's someone else's kid. I have no doubt the finest surgeon could perform admirable delicate surgery on a pediatric patient with only mild anxiety. I'm not sure the same surgeon could do it on his or her own child at all, never mind without extreme anxiety. We are our kids doctors for the most part. When I go to the allergist it's for the labs and consultation, not the administration of monitoring and emergent treatment.

Personal judgment from allergist? Knock yourself out. But DO NOT malign me to my insurance company, my child's institution of education, or otherwise throw further road blocks into other areas of development because YOU HAVE NOTHING to alleviate the condition.

Instead, please consider working with me because I've been in britches-soiling situations before with appropriate resolve but I've got more at stake here than my own butt and I have a razor-thin margin of error in perpetuity until they magically outgrow all their allergies or there's a medicine. The factors are dynamic and interrelated, there is no static lab conditions based on the statistical mean ruling my universe.

I've seen a lot of immunologists and immunology researchers work relentlessly mechanisms, and still more steering the course of clinical allergy medicine towards individual patient needs. Both of those are heartening to me and I appreciate incredibly. Unfortunately "Just Don't Worry" is about as effective as "Just Say No". There is 0% change to the stimulus that would incite concern over what you need to know/do/avoid to stay alive.

That dear readers is why I am beyond eyerolling and facepalming over these stupid anxiety studies.

Maybe I'm overlooking something big and obvious, I'm extremely imperfect, but that's how I see it. You can stop worrying! Really? Cool, are we cured? Um, no. Okay, some sort of preventative medicine. Well, not yet. Mechanism discovered and reversible? Ah, not as such.

Then WHAT? Empty pockets? Sure, I'll just be back to avoidance then if it's okay with you.

[CMdeux]

{APPLAUSE}

[LinksEtc]

ok, let me give this a try ...

When dd was first diagnosed, there was some anxiety which is probably normal.  Educating myself and joining this group made me feel much more confident in my ability to handle the condition and decreased my anxiety.  I tend to agree with Boo, though, that it is so important to keep risk in perspective.

It is often the case that the brunt of food allergy management falls on the mother.  Sometimes she is given an almost impossible directive to follow.  I'm talking in general here (not talking about my personal situation) - Say an allergist tells a mom that she should do her best to avoid all sesame seeds, and even shared lines and facilities that have excellent allergen control measures and cleaning procedures in place.  Many allergists have no idea how hard this is because of poor labeling and food manufacturers being unwilling to share that information.

This brings me to a point that CM made - I am also a big fan of food challenges (done by a qualified allergist).  I think in most cases (pass or fail) it helps the family to know what needs to be avoided and gives some idea as to where things stand in terms of sensitivity (which of course can change and so can't be totally depended on).  I think most challenges decrease anxiety.  However, there are always exceptions.  Having a huge rxn might increase anxiety for a while.  Having an unusual case where a person "passes", still has symptoms, and then friction occurs between the parent(s) and the allergist (this has been described by several people on the board) would likely increase anxiety.

Another area that causes food allergy stress & anxiety for many - dealing with people who are, let's say, refractory to food allergy education  .  Sometimes there is a real cause for concern so I would not say that such anxiety is unwarranted.


I still have many more thoughts on this "anxiety" topic.  To be continued ....

[Linden]

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". Oh sure, go tell that to all the parents whose child had a "mild" allergy and never had a severe reaction until the day their child died.  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 am so thankful that my allergist doesn't believe any of the "rare" and "reassuring" nonsense.

[LinksEtc]

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".

If patients/parents feel they are not being given the benefit of the doubt when they report symptoms, this can lead to big problems.  Breakdowns in communication can be dangerous.

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Now, that's not to say that the symptoms are always "real" or from FA.  That's why double-blind challenges are so helpful (it's not so easy to determine whether symptoms are truly due to FA).

"Placebo reactions in double-blind, placebo-controlled food challenges in children"
http://onlinelibrary.wiley.com/doi/10.1111/j.1398-9995.2007.01430.x/abstract

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One problem I see is that if the allergist truly feels the symptoms are "impossible", the focus may prematurely be diverted from investigating those reported symptoms in an objective way & instead turn to solving/handling the "issue" of the (often) mom's/patient's "anxiety" (or other mental health issue).  Again, I am speaking in general terms - from years of hearing FAS experiences.

[LinksEtc]

"The Age of Anxiety Breathing"
http://www.asthmaallergieschildren.com/2013/11/06/the-age-of-anxiety-breathing/

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.

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Unrelated to the above ....

If others perceived or believed you to be anxious (regardless of whether or not this was actually correct), did that affect your ability to effectively advocate for yourself or your child?

Does mental illness stigma come into play?

[CMdeux]

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.   

  Not sure why that aspect of things never seems to occur to others who preach "mind over matter" with this stuff.