Tired of the Special Treatment

[mkobhu2]

I'm just wondering if I'm the only one out there that wishes that food allergies weren't taken as seriously as they are? As someone who has lived with them my entire life I'm starting to get a little overwhelmed with the concern from those around me. it pains me  to see kids these days that are defined by their allergies and in my mind it appears that these day kids with allergies are being nurtured and not educated. Remember that you r kids won't be under your wing for long, so the faster that they learn about their allergies the better not only will they be safer because of it, this will also take some of the stress off from you, the parents.  What do you think ?

[TabiCat]

You hold your child gasping for air. Or screaming in pain from a GI reaction and tthen come back and tell these parents that they are over reacting.


I don't know what you think we are not teaching our chidren. They are taught to avoid accedental exposure always wear and carry an epipen and how and when to use it. So I Iam unsure what you are accusing the parents here of.

[hezzier]

I think you are mistaken.  Food allergies should be taken seriously.  More often than not they are not taken seriously enough by schools, friends and even family members.

Now, should a child be defined by their food allergies, absolutely not...but that is an entirely different subject.

[mkobhu2]

First I would like to make it clear that it was not my goal to accuse parents of anything, I was making note of how peers react to food allergies. I fully understand the want of a parent to protect their child and would find in a tragedy if a parent of and allergenic child did not feel this way. As to education, some steps are occasionally overlooked, for one children are often not made aware of anaphylactic shock early enough so if something does occur with their bodies they can be more prepared to deal with the situation. As someone who has seen my brother succumb the plight of tree nut allergies and go through Anaphylaxis with a calm demeanor because of what he had learned previously. Also many kids are not being taught enough about their allergies, I recently assisted a kid that was in anaphylactic shock; he had a tree nut allergy  and had just sat down to a slice of pecan pie, this is a fourteen year old kid we're talking about that was never informed that that the pecan was a tree nut. This is where I feel some more extensive education should occur. I would also like to make a note to parents, most of you using this sight are those who care for your children and are doing all of the right things, I was just making the statement that there are some kids out there that aren't as fortunate.

[CMdeux]

I think that we can all agree that more education is pretty much never going to go amiss.

As for "over-sheltering," well, I don't think so.

Calmly facing anaphylaxis strikes me as a bit naive, which I hope doesn't offend you.  Having seen it several times and experienced it myself, there is something to be said for the underlying cognitive impairment there that may have led to that assumption on your part.  I'm familiar with how that feels, by the way.  A nuclear blast probably would strike one as only "interesting" but in the same general way as a car with cute vanity plates on it.  At the time, I mean.

My daughter is a teen, and she's had more than enough terror in her life from anaphylaxis that she is never going to take her allergies lightly.  Nor should she.  Reality, unfortunately, is a BRUTAL taskmaster, and some kids like the one you saw won't get a second chance.

My personal take on that situation is that it wasn't that the child didn't KNOW what pecans were... more likely, s/he was "mildly" allergic to another nut.  Or had "never had a problem before."

That's a quite common story among fatalities, incidentally.

But at the same time, those are NOT the kids who have been "sheltered" by well-meaning but hopelessly optimistic parents who think that they can bubblewrap their kids for a lifetime.  Mostly those kids (in stark contrast to many of FAS' kids) don't have ANY protections in place at school, they may not wear MedicAlert jewelry or carry epinephrine, may never have learned what anaphylaxis risk is, and are taught "don't be a pain about your allergies.  Don't tell anyone."

So yes, yes, yes education is needed-- let's start with PHYSICIANS.  Far too many of them give out bad advice, or fail to note warning signs from patient histories... and far too many of them diagnose allergies on the basis of skin testing alone and then offer no follow up care.

A very warm welcome to you, by the way!  What a thought-provoking post.   

[Janelle205]

Calmly facing anaphylaxis strikes me as a bit naive, which I hope doesn't offend you.  Having seen it several times and experienced it myself, there is something to be said for the underlying cognitive impairment there that may have led to that assumption on your part.  I'm familiar with how that feels, by the way.  A nuclear blast probably would strike one as only "interesting" but in the same general way as a car with cute vanity plates on it.  At the time, I mean.

This was my first thought as well.  Similarly, I don't want to be offensive, but anyone who is calm during an anaphylactic reaction clearly hasn't experienced the 'feeling of impending doom' symptom.  I'm an adult, I know what is happening when I have a reaction, but it's not really possible to stay calm when your brain is screaming: "You are going to die." at you.


I'm glad that you seem to be surrounded by people who take allergies seriously.  Could you send a few of them in my direction - I could definitely use a few more folks that 'get it'.

[lakeswimr]

Strangely I as the parent always stay very calm and react during a reaction.  It is only much later that all the emotions of the moments that I didn't feel come to me.  It's very strange.  I have no idea how my child feels as he is not very good at telling me things like that.  He always goes into denial, though.  He is scared of the epi pen still.

As for overprotection,  I am not sure what the OP means.  We started out taking very few precautions, our son reacted, we realized more precautions were needed and he reacted still and we added additional precautions.  This continued until we got where we are today.  Sometimes we take away some precautions as he seems to no longer need them.  I'm not sure of your general idea that our children are 'overprotected'.  Can you give an example? 

I kind of get it, maybe.  I grew up with super severe environmental allergies (not food allergies, though) and also asthma that landed me in the ER different times.  When I read about parents seeming to be very, very concerned because their child has environmental allergies it seems strange to me.  I grew up with allergies all spring, summer and fall and colds all winter long and no one seemed to be concerned about this.  I can't imagine receiving the treatment that young kids do now when they have allergies like I did.  It can seem overboard to me but then again, I suffered a lot and if this helps those kids not suffer the way I did that's good.  Likewise, I know asthma is a very serious condition but I grew up at a time it wasn't treated the way it is today and I sometimes have similar feelings about asthma even though logically I know in my mind that the new, modern way to care for asthma is much safer and better.  So, maybe since things are different now than when you were growing up and having to always fend for yourself you find things overboard or foreign at least.  I can understand that.  But consider that knowledge of food allergies and anaphylaxis has changed since you were a child and also that laws protecting children with food allergies have been clarified and increased so our children do have more rights than you did as a child, at least in many states.  The 2008 amendment to the ADA makes a big difference for those with food allergies as well as many other state laws giving rights for people to carry epi pens in schools and many other state laws.

[Mfamom]

Could you give examples of how kids with food allergies are getting special treatment?  I know that my son becomes very uncomfortable when those around him are indifferent or don't understand his allergies. 
It seems like people who are educated can't help but try to help someone with allergies manage a situation, try to include them etc.  Is that the special treatment you're referring to?

Anaphylaxis is a medical emergency and while knowing how to treat a reaction
could possibly help you keep your wits about you, its scary.  If you are the one reacting, you may not be clear headed and may experience agitation, sense of doom etc which are part of the reaction and can't be controlled.

In my experience, most people are underwhelmed with allergy management and what it means to have a child with allergies. 

[notnutty]

If by "special treatment" you mean your allergic child can't attend a field trip, then yeah...my DS is getting a dose of this very "special treatment" next week when the entire 5th grade gets to attend a MLB game and he doesn't...

Good grief...

[PurpleCat]

I'm just wondering if I'm the only one out there that wishes that food allergies weren't taken as seriously as they are? As someone who has lived with them my entire life I'm starting to get a little overwhelmed with the concern from those around me.

Can you share your age or something about your situation?  It might help us understand the points you are sharing with us.

I'm a parent, my child has allergies, she has lived with them all her life and she is almost 13. 

Neither she nor I would be comfortable with people not taking her allergies seriously.  We even train her good friends with expired epi pens so one day, unfortunately sooner than I'd like, she will want to go off with them, but I will know they know what to do if needed.

[CMdeux]

It sounds to me as though our OP has a younger sibling with food allergies... and that s/he is very concerned that some children are raised to expect other people to handle all of the responsibility for their food allergies.


If so, then I have to agree that this is a VERY serious concern, and one that is completely valid. 

As a parent, I understand all too well how short my time is in terms of teaching my child how to survive (and hopefully-- to 'thrive') with her food allergies.

She can't do that if I keep her so sheltered that she has no practice making decisions for herself and solving problems related to her own condition.

It's also not right if everything around her revolves around those allergies.  Her father and I are both human beings with unique needs and desires, too.  We count just as much as she does.  Similarly, she can't expect that her friends will always opt to make decisions which take her comfort and wishes into account.  She definitely shouldn't expect ANYONE to take her safety as seriously as she herself does.  That is a lesson that we've (sadly, due to extended family which posed a fairly large risk to her) had to instill early, forcefully, and often.  Don't trust ANYONE's word when it comes to food you plan to eat. 

I think that this is a really important conversation for those of us with late-elementary children, and even moreso with adolescents.  How do we let them have a safe space to learn in?

I hope that our OP will be back to add to this conversation, which I find really fascinating.    One question that I have is; how did your family manage to NOT place the FA child front and center all the time?  Or did your family manage that task well, in your estimation?  (I ask because this is a really common problem in families with a medical condition in one family member-- that person seems to always be in the spotlight.  It's also true for families with diabetic children or those with LD's or seizure disorders.)

[mkobhu2]

First some info about my self I'm a 18 year old male that spent his first five years of life in and out of a hospital bed for Asthma related problems. At the age of 3 I was officially diagnosed with Asthma as well as an allergy to cats and dogs.

As a kid I grew up in a family that ate Tree Nuts religiously we even had a drawer devoted to them. But, one night at the age of 5 I tried a brazil nut and immediately went in to anaphylactic shock. I have been officially diagnosed with an Allergy to all tree nuts but it should be mentioned that this allergy is only through ingestion. Just as a reminder this was back in 1998 when allergies weren't as prevalent and as focused on

Since then I have remained Safe and haven't had another reaction, and am often asked to talk with other younger kids about allergies.

CMdeux  (first Post)

In retrospect Calmly probably wasn't the proper word, what I meant to imply was that he knew what he need for help and sought it immediately and was able to tell the school teacher what was wrong with out the teacher trying to inquire about what was going on.

lakeswimr

On the topic of over protection in my case I'm only allergic through ingestion so to me there are points in my life where I wish people had cared less. However I would like to point out to those parents who have kids with airborne or contact allergies I admire your commitment in protecting your children from a sightless adversary.

Mfamom

Types of special treatment would include something like when a child brings in treats for their birthday and because you can't enjoy said treat you get something that others didn't get. To understand my views, you should know that I'm the kind of person that would rather go without than to receive treatment different from my peers. This is pretty close to what I meant "It seems like people who are educated can't help but try to help someone with allergies manage a situation"

notnutty

Thank you for sharing a story in which "special treatment can be seen in a negative light, is the reason they can't attend due to airborne peanut shells and dust?

CMdeux (second Post)

With the overprotection and special treatment bit of this topic I would like to point out that I fully believe that young kids and those who have been just diagnosed should be watched for a period of time but eventually they should be taught to handle their allergies on there own.
As for how not to place a FA child in the spotlight, family went on as though nothing had happened; at home I was just a normal kid. My parents also focused on education of allergies to my brother and myself. Also at the time, my brother was going through some seizures so the concern of the family was on him. I slowly learned to deal exclusion from some food related moments and learned to read the label on everything I ever put in my mouth even if I just read the same label a week earlier.



If I missed any of your questions or concerns please feel free to either post again calling me out or send a message and I'll try to answer ASAP

[SweetandSour]

I see where the OP is coming from. There is, I think, a difference in how the person with the allergies handles them as opposed to a parent, or in my case, a spouse. And how they expect it to be handled. DH would have my workplace be nut free. I don't care if it is or isn't because it is up to me to be safe. I educated people how to give the epi pen, and they do get that my allergies are serious. But it's my responsibility to be safe.

I'm tired of the special treatment too. I Hate being front and center at meals or at events with food. Is it necessary? Of Course. But I hate that I have to do it.

As for the calmness issue, I need it. Freaking out made things ten times worse. So DH stays calm, and it helps me stay calmer.


ETA: You are like me, I would rather be without then have my allergies brought to attention with something special. I think it varies by the person.

[CMdeux]

Ahhhh-- yes, that makes sense.

Management FATIGUE, in part?  Absolutely.

I hate that so much is about FOOD, FOOD, FOOD-- even when it doesn't need to be, or when including food is sort of ridiculous/bizarre. 

It means that for someone with extreme sensitivity, you can never just blow off making those inquiries, and it leaves you forever in this virtual spotlight socially.  UGH.

Sooo... will the children be having a snack of some kind while they are dissecting the owl pellets?     (Add that to the list of "questions I never thought I'd have to ask," for sure.)

  It also means that you frequently get slapped with unexpected social inquiries that you'd rather not deal with if you're someone like me, or my DH (we're not aerosol or contact sensitive).  <thinking>  WTH?!?  DONUTS??  This is a meeting which is taking place at 1:45 PM.  We're all adults. What are we?  A bunch of trained SEALS barking for FISH??!   DONUTS??  SERIOUSLY??  And in part this is my attitude because INEVITABLY a simple "No, thank you," is met with inquiries and disbelief on the part of the ignorant... and with apologies and unecessary angst/energy directed at the 'problem' (created by completely unecessary FOOD) once they know why you aren't scarfing down whatever it is...

For once and for all:  food. is. not. a. nice. surprise.   

Yeah.  That part definitely SUCKETH mightily.  My angst on this score comes and goes.  But we're very clear that it is a-okay for DD to feel irritated by the constant nature of this kind of thing.  Which, um... yeah-- she does.  She's especially not fond of activities where seemingly normal, sane adults THROW CANDY at other seemingly normal, sane, mature people.  EXACTLY as if they were Sea World performers.  Heheh.  Operant conditioning, much?  But her angst here is about actual RISK, too.  Food = risk for her.  Period.  (She's a kid with anaphylaxis history from invisible trace contact and probable aerosol exposure.)  She definitely has self-protective instincts, though-- she washes her hands compulsively and uses long sleeves to avoid contact with 'touch' surfaces like doorknobs, railings, and counters.  She has to-- the price for forgetting is asthma, hives, or worse.  She knows which brands label for shared processing, and she knows how to call a manufacturer to find out about cross-contamination risk.  Again-- necessary for her.  She can't tolerate shared lines with peanuts or some treenuts (cleaned or not).  She knows what ALL of her allergens look like, and she knows to avoid them.  This is a 13yo that can spot a pistachio shell at forty feet.  Not kidding.   

I can also add, here, that avoidance of shellfish or a single treenut (both of which an adult in my household must do, btw) is relatively simple when compared with the sheer level of difficulty in successfully avoiding peanuts, even (at least in North America)-- nevermind eggs or milk, either of which is harder still.... or, heaven forbid, something like sesame or sunflower (which isn't always labeled well).  So in addition to sensitivity dictating the avoidance measures needed, the nature of the allergen plays a role, too.  For example, you'd never imagine that we're crazy allergy parents to meet my DH or I, as we're both VERY low-key about our own FA and really we're quite interesting people who talk about LOTS of other stuff (LOL), we're just careful and prudent about what we actually eat.

So while my daughter's food allergies very definitely cause life impairment sufficient to warrant the label "disability" with the legal protections that affords her... I certainly do not see either my DH's allergies or my own in that light.  We're not really any more impaired than other adults we know without food allergies.  DD probably always will be, however.  I definitely thought that parents like us were "overprotective" until we had the experience of having a child like our daughter.  I also thought that I knew quite a bit about food allergies.  I didn't have a clue what it was like to live as a super- allergic person.  Not really.  My life?  Inconvenient at times, even annoying.  My DD's life?  Downright terrifying outside of a few 'safer' locations where food is uncommon or highly controlled.

Wheat, corn, and soy are crazy hard to avoid traces of.  Did that for a while when DD was tiny.  <shudders>    Incidentally, this was about the time you were diagnosed, too.  A lot has gotten better since then in terms of labeling and awareness, for sure!!  While that makes people like my daughter safer, it also turns out to be kind of a pain for people like you and I, who now face the curiosity of people who feel intent on grilling us at every turn, when what we'd really like is to just be left alone about it.   I can't really feel too bad about that trade off, since it helps keep people who are super-sensitive alive and all.  But it sure isn't a lot of fun to feel like you're being interrogated/managed by strangers all the time. 

I'm probably in a somewhat unusual position here, since I am a person with a fairly 'typical' FA and a couple of unusual holdovers from childhood, and my DD is someone with a pretty extreme set of multiple allergies, and my DH is someone who grew up with FA's that were typically pretty mild in presentation, but to things which are really ubiquitous (he's nowhere near as careful as I am, fwiw).

Too much focus? Yes.  For me personally, absolutely.  HATE that.  I know that my daughter hates feeling like a lab specimen, too.

But I can't really regret it because DD and people like her need all the help that they can get.  I'll deal with the pain in the neck if it means that people will be more aware and concerned for HER. 

[SilverLining]

I've got admit....a childish part of me really liked that my son and his wife made their wedding meal safe for me.  And the Jack & Jill party was a pot-luck, and a few guest chose to bring safe for me food, which was put aside until I took what I wanted, to prevent cross-contamination.  That did feel really great.

But usually.....I'll eat before going to <anything>.  And I don't want special treatment....cuz I usually won't trust you anyway.