Wednesday, July 31, 2013

When Food-Allergy Mortality Smacks You Upside the Head

Yes, I know about the latest death in our community. I started a long screed here about all of my favorite hobby horses:
  • The dangers of giving global medical advice over the internet (yes, I'm looking at you, web sites who are telling everyone to start giving epinephrine even before symptoms)
  • The nastiness of assuming this child's family has lost their right to privacy because they've experienced a tragedy (yes, I'm looking at you, web sites who continually stir the pot for internet traffic)
  • The danger of wallowing in the very rare, worst-case scenario and the impact it can have on our ongoing anxiety disorders (which, admit it, we all have at this point)
But really...writing about all that is just my way of avoiding something we all do not want to think about:
Some kids die and there's nothing we can do about it
The father was a doctor, for heaven's sake! He was right there. He treated her based on his training and experience. I have no doubt he did the best job he could do, probably that anyone could do. And yet she died. The medical community is aware of a hard truth: some cases of anaphylaxis are simply refractive to epinephrine. Sometimes there is nothing that can be done.

And yet, we are all nit-picking the situation apart, hoping to learn something new from it.

I cannot imagine the grief of this family. But I can certainly project that grief onto my own situation if I allow myself to do it.

Excellent article about how
not to say the wrong thing
while someone is coping
with illness or loss
I heard an interesting term the other day: grief appropriation. I have a friend with cancer and I have been doing some reading about how to be supportive rather than annoying while she's doing chemo. This was one of the nuggets I learned: don't appropriate her grief. Don't put yourself in her spot. Don't empathize to the point that you are taking over the situation, and not allowing her to express the emotions she needs to express.

How much weirder is it to do this with someone we don't even know personally? To add to their burden by kvetching on the internet when we aren't even in their intimate circle?

Look: I've been writing about this for a year and a half now. If you want to wallow, I'm not going to be able to stop you. If you want to look up every web site, and imagine your child in her place, dead on the floor, it's your choice. But it doesn't help. It doesn't help. And those types of thoughts really can do physical and mental harm.

This is the part that makes me so angry about how these stories are handled on allergy web sites: they are never disseminated with balance. They should ALWAYS be framed with the statistics: only a handful of kids die from allergies each year.

It's odd to think that admitting some kids simply die can be a freeing thought...but it can. We cannot prevent all harm to our children. Whether it's the pedophile, or the car crash after prom, or the runaway food allergy reaction, there are things that just happenBUT THEY DON'T HAPPEN TO MOST CHILDREN. We take every sensible precaution...but then we have to let go.

By all means: review your medical plan. Challenge your doctor as to whether epinephrine should be administered if there is a known exposure to an allergen, especially if that allergen is tree nut or peanut, and especially if your child is an 11-16 year old girl (hormones seem to increase reaction severity in this group). But, once you're done, set it aside. Live your life.

Keep in mind: anxiety disorders kill too. No one likes to discuss it, but suicide is the third leading cause of death in adolescents, and anxiety is a significant risk factor for suicide. We have a responsibility as parents to achieve balance in our children's lives.

Unfortunately, balanced, responsible reports about food allergy deaths are as rare as the deaths themselves. If you do keep reading these stories, think about that word as you do so: balance. Does the source you are reading balance the presentation of the story with the general risk of death? Does it balance the privacy rights of the family with your need to know? Does it balance education about food allergy fatalities with education about anxiety disorders?

If it doesn't, why are you still reading it?

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Tuesday, July 16, 2013

Will the New Little Prince or Princess of Cambridge Have Food Allergies?

Yes, this entire column is just an
excuse to post these photos
I admit it. My guilty pleasure is reading all the British royalty news about the new Ruler of the Seas To Be. But a line in an article the other day caught my eye:
"A hospital porter added...'they have been cleaning the floor inside and outside of the ward. They've re-painted.'" 
I might be the only person in the world who would immediately think of food allergies upon reading that...but it's not as far-fetched as you think.

There are definitely some provocative associations when it comes to allergies, and exposure to new nursery paint is one of them.  Boy babies exposed to new paint and fungus during the first six months of their lives had several times the rate of eczema that daughters without these exposures did. (Eczema is often a precursor to food allergies.)

Love the bored flower girl!
So what else might predispose the young prince or princess to become one of our fold?

  • Hospital delivery, especially if C-section: one can assume they will be taking no risks with the life of the future Head of the Commonwealth, so the odds of Kate having a c-section (especially since this is a first baby) are high. While results are not conclusive, the systematic review of studies for c-section and food allergy have shown an association. The lack of exposure to flora in the birth canal, resulting in poor gastrointestinal colonization of helpful bacteria, may be the culprit. Some doctors even go so far as to swab the insides of the mother's whoo-haa and then place it in the baby's mouth to combat this issue!
  • Avoiding allergens during pregnancy and/or breastfeeding: in 2011, Kate and Will made news with Peanutgate when the media jumped to the conclusion that Kate must be pregnant because she was avoiding eating peanut paste. While it turned out she was not pregnant at that time, this pervasive idea that avoiding allergens during pregnancy lessens the chance of developing allergies in the newborn is a very bad one. No way to know if she avoided once she was pregnant...but eating potential allergens during pregnancy appears to be more protective than problematic.
  • Issues with vitamin deficiency/supplementation: we know Kate had hyperemesis gravidarum, or life-threatening morning sickness. No doubt she was given vitamin supplements to make up for all the illness in her early months. Unfortunately, vitamin supplementation (and in particular, vitamin D) has been associated with an increase in food allergies
So, all in all, Kate and Will are pretty screwed. Their kid will almost certainly have allergies, and may very well join the ranks of the almost 1 in 12 British kids who have a food allergy. While it would likely be a nightmare for the British Royal Protection team tasked with keeping the future little Protector of the Faith safe, it would certainly raise awareness for the rest of us! 

Kate - if you need any help with shopping or recipes, I'm here for you. When addressing me, please make sure you use the Bitch. It's part of my title, after all.

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Sunday, July 14, 2013

3 Phrases I Wish Food Service Would Stop Using When Discussing Food Allergies

It's camp time again for a lot of our kids. Even though my son is 18 now, he's fulfilling his childhood-long dream of finally going to...Space Camp! It's quite expensive, but my husband and I decided we could pony up the money as a graduation gift.

I'm writing as a distraction while he's on the way to the airport to catch his plane. I knew I would cry. I knew he would get mad about it. Better to stay behind and write.

First off, let me say that the Space Camp food service people have been pretty good so far. But, having been through this a few other times with other camps, I'm seeing the same patterns of misunderstanding. So here's my list of what I wish camp and school food service organizations would edit out of their communication with parents:

1. "We handle allergies all the time." Yes, we know you do. As responsible parents, we have checked out your camp and verified that you do know how to handle food allergies. But that doesn't mean you can't make a mistake.

We parents also handle allergies every day, and yet most of us (especially those of us who have kids with common allergies) have made mistakes. It can happen to anyone. When you say this, it makes us feel like you're saying "just trust us", and that's not helpful. Working with us as a partner to double-check foods will make everyone feel more secure.

2. "He shouldn't have to worry about the food while he's here." Allergic kids need to be in control of their allergy. That means they need access to food labels. As parents, we follow the FARE guidelines for raising our child to responsibly deal with his food allergies, including teaching him REAL: Read Every and All Labels. That doesn't stop because he's at camp.

Allowing children access to food labels and giving them the opportunity to talk through the preparation of their food doesn't increase relieves worry. It also teaches self sufficiency.

It's exactly because we trust you that we are giving our children the opportunity to practice asking about ingredients and the preparation of their meals in your safe environment. When they head off to college...or the buffet at the business meeting...they'll have a better idea of how to handle things in those less safe environments.

3. "We know how to handle 'X' allergy." Knowing what a child is allergic to is only the beginning of the conversation. It's also crucial to know how sensitive the child is to the allergen. Some allergic individuals do not worry about cross-contamination because they haven't had issues. Others need strict avoidance.

Additionally, multiple allergies complicate matters. For example, the Space Camp food service used a allergen-friendly mac & cheese that contained no milk. It was a product we had not used before so I immediately checked the label. Hidden 8 ingredients down was "pea protein", something that likely would have send my son to the hospital. To be clear, the menu wasn't set yet for my son; this food was on their standard "dairy-free" menu. But it's easy for food service organizations to get into patterns when dealing with allergies and to create special menus for "peanut allergic", "milk allergic", etc. It can be more difficult (and dangerous) when multiple or less common allergens require custom menus.

I wonder if some of the perceived judgment I've felt during these interactions has to do with these types of misunderstandings. By trying to take away the worry, food service managers are often adding more worry for the parents of food-allergic kids. "We know what we're doing" can sound like "we don't want your input on how to deal with things." Simply changing these common phrases could go a long way toward building rapport.

Our own situation this time is going to be interesting. The menu for the week was not available until Friday, and I have yet to receive labels. That means my son will need to be the one to insist on the label reading. It's time for him to do this without a safety net and he's ready...but that doesn't mean I won't be biting my nails. I know there are already a lot of you out there with bleeding cuticles.

Just remember: camp is an important learning experience, an opportunity to be on one's own, a rite of passage.

Oh, and the kids will have fun, too!

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Wednesday, July 3, 2013

Dealing With PTSD From Food Allergies

I haven't been writing much lately, obviously. As I'm sure all of you know, there are ups and downs in this world of food allergies and, despite all the news being good for us, the stress of introducing all these new foods has made spring a stressful time in our house.

But I thought of you all two mornings ago. That is, I thought of you all after my heart stopped racing and the nausea and shakes went away.

Monday morning, my daughter (the one we called "Teflon girl" because illness seems to just slide off her) came into the office where I was working. She had just gotten out of bed. She said "Mom, I feel so sick I don't know what to do" and slumped against my shoulder.

I thought she was kidding until I reached out and touched her. Ice cold. Covered in sweat. And losing consciousness.

She got up off the chair and lurched toward her bedroom. I followed her, heart in my mouth, just in time to see her fall full out across her bed, lengthwise. As I ran to her and shook her (no response, eyes wide open), I thought to myself "This cannot be happening. This CANNOT be happening! This is the one who doesn't HAVE medical issues!"

Fifteen seconds of shaking and calling her name - no response. I ran for the office phone and dialed 911. "I need an ambulance!" tumbled out, followed by our address, her symptoms. Yes, she was breathing. No, she wasn't responsive. No, she did not have a history of seizure disorders. More questions I don't remember. Why are they talking to me while my daughter is laying here? Why aren't they on their way?

Just then, she regained consciousness. "I'm o.k., Mom," she said. "You don't need to have them come." But they were already on their way, and I sure as heck wasn't going to tell them not to come after what I had just been through.

What I had just been through. My daughter, as it turned out, was probably going to be o.k. The EMTs did come (seemed like forever, probably only took them 5 minutes though) and checked her out. All vitals were fine. She felt fine.

When we went to the doctor later on in the day, he said she probably had a stomach virus and simply fainted. Apparently it happens a lot to teenage girls.

But there were also a series of questions from him. Any history of sudden death in the family? (Turns out cardiac disorders can manifest with fainting episodes.) Any history of familial fainting? I reminded him of her bone marrow disorder when she was a toddler...could this be related? "No," he replied, "although I'll be happy to run a hemoglobin test if it would reassure you. But I can tell from looking at her that her iron and red blood cell count are fine."

He went on to say that, 99% of the time, fainting is just a simple nervous system reaction. There's no real way to know which kids are going to have a more serious underlying cause, however, without a bunch of testing. They prefer not to do all that testing unless there are multiple episodes.

I found myself looking at my daughter in a whole new way on the way home. My Teflon girl was all of a sudden...fragile. I couldn't sleep all Monday night. I kept going into her room to make sure she was o.k., as if my presence could magically hold back another episode.

Does all this sound familiar?

Honestly, I don't know how we do it all day, every day. The idea that a seemingly healthy child could just keel over is horrific. Living in the what if it happens again world every day is even worse.

Why is it so hard to live in the moment? To simply enjoy our children without treating them like ticking time bombs? Why is it so hard to talk about the stress of medical issues with others without sounding crazy or feeling judged?

How do you shake the fear, once it's in your house? In your heart?

I don't know. I wish I did. All I can do is write about it.

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