Wednesday, August 21, 2013

The Gift

I watched a mom this morning
Standing on our street
Her hand already empty
Her child was in his seat

She waved away the bus, and watched
It bounce around the corner
Then instantly the smile changed
From happy mom to mourner

"I hope he couldn't tell" she said
"I'm afraid to let him go,
His teacher's just so young this year!
What could she really know?"

"My son has allergies, you see
He's never been away
And now there's snacks and crafts and lunch
Will he be o.k. each day?"

"But I try to give him this one gift:
I show him I'm delighted
And hide my fear so he can be
Just happy and excited."

I saw them later, walking home
Her face, calm and relaxed
She stopped to show the teacher's note
Her son had just brought back

"I'm sure today was hard for you,
To have to trust a stranger
To send your precious child away
To a place so filled with danger"

But the place is also filled with love
And we'll work to keep him safe
Thank you for your precious gift
Thank you for your faith

I glanced down at her son and asked
"So how did you like school?"
His face lit up and he said "Just great!"
"My teacher is so cool!"

And as he skipped off down the street
She added one last thought
"I felt like I was falling,
Then I read that - and was caught"

"I thought letting go meant losing
But I didn't understand
In the end, you get a circle
If you all hold out your hand"

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Tuesday, August 20, 2013

New Food Allergy Action Plan from FARE...And It's...Confusing

I was very happy to see a notification in my Facebook feed that FARE has come out with a revised allergy action plan document. This one does a better job than the old form of pointing out severe symptoms. It also addresses instructions for all three of the major brands of epinephrine injector and gives important after-care instructions, the most crucial of which is that a person having a reaction should lay down and stay down.

But I do have to bitch a little about the form. Look at how the top of the form is laid out:

Do you see the issue? By putting the check boxes for when to give epinephrine inside of the symptoms boxes, it may confuse people into believing that epinephrine should be given immediately, even if the allergen was only likely eaten, for mild symptoms. What about if symptoms are severe but the allergen was only likely?

The better way to have done this would be to give each decision point its own area on a chart. All they would need to do is move the two check boxes ABOVE the severe/mild symptoms area, up in the same area where the asthma check box already is.

But my bigger-picture issue with the check boxes is that there are many more than just two decision points when it comes to deciding whether to give epinephrine. Does every allergen get treated the same? Every reaction history? How likely does the exposure need to be (especially for kids who don't get tell-tale hives)? What do you do if the kid has asthma and wheezing is the only symptom?

Here are the main three decision points (plus one I added for type of allergen) that I think the FARE form check boxes were trying to cover:

NOTE: This is NOT medical advice! Really! I am putting this out there for discussion purposes and I expect each of you to talk this through with your doctor. 

That said...I hope we can all agree that the first two lines are no-brainers. Personally, I think the third line should be a no-brainer, especially given the recent stories. But it's the next three lines where things get complicated. These are the situations each parent has to walk through with their own physician.

There is a balance here, and clearly many FA parents need to be strongly encouraged not to be afraid to use epinephrine. The drug is woefully under-utilized during reactions: in one study, only about 1 in 3 people received epinephrine before arriving in the ER. At the same time, none of us want to be over-reacting and giving epinephrine every time our kid sniffles and might have touched a ball on the playground that another child also touched. (If you haven't read my previous post on why we hesitate to give epinephrine, now might be a good time.)

Now, let's talk about the form.

The form check boxes definitely need to be far simpler than the matrix above. One of my big issues with the new FARE form is this business about whether the child has actually eaten the allergen. What does "likely eaten" even mean? I definitely don't think the nurse should be running around, quizzing the kids the child ate lunch with!

I also think the FARE group assumed that any allergy that justifies an epinephrine injector in the first place can probably be assumed to have the potential to cause a severe allergy. Finally, we want nurses to err on the side of administering epinephrine in an uncertain situation. Given all that, here is how I would have structured the top of that form:

This form takes the decision point about whether an allergen was consumed out of the equation. It also gives a place for a doctor to indicate the need to be more aggressive with treatment in specific situations where nurses typically take a wait-and-see approach. Finally (my pet peeve), it reminds people that hives are not always present during severe reactions.

FARE committee: if you're out there, I know you likely agonized over this form. I am being critical because I care. Because this is so very important. And because, as I said above, if I don't get it after 13 years of dealing with schools, others are also going to be confused.

And plus, you know me. I always have an opinion. 

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Friday, August 9, 2013

Liberal, Overbearing, New Age, Alternative Medicine Food Allergy Moms

My mom called the other night.

"I talked to your cousin Donna last night. I told her she should call you. She's into a lot of the same stuff you're into."

"Um...what stuff would that be, Mom?"

"You know...all that stuff about the bees and GMOs and vaccines, honey. I told her you knew a lot about it and would be happy to talk with her."

YIKES! Since when did having a kid with food allergies automatically qualify me for the willing-to-accept-every-random-theory club?

As you guys know, I do a lot of reading and I have come to think there may be something to some of the alternative theories out there, particularly around pesticides and antibiotics killing off symbiotic gut bacteria. But I've also spent 25 years of my career firmly submerged in Western medicine and my mother knows this. So what the heck happened here?

A week later, I wondered it all over again as I read this article on Slate. It's apparently debunking an Elle magazine story that links food allergies and GMO corn.
Shetterly is the protagonist of her article, and the plight she faced that spurred her to write this story is truly sad. She was plagued for years by a variety of debilitating symptoms from headaches to fatigue to hands frozen into claws by pain. She went from one doctor to another, but no cause was identified and no cure found.

On the recommendation of her physician, she went to see Maine allergist Paris Mansmann. Shetterly showed symptoms, he concluded, of eosinophilic disorder—a multisystemic condition in which white blood cells overproduce in response to allergens. These abundant cells release enzymes that break down proteins, which in turn damage the esophagus, airways, or other organs. But what was causing the reaction? Mansmann opined that Shetterly’s condition could be the result of eating genetically modified (GMO) corn. According to Shetterly, the Maine physician suggested she strip all corn from her diet.
Eosinophilic esophagitis is a very real condition. However, the primary symptoms of the disease are difficulty swallowing and reflux, not headaches and fatigue. The treatment for EoE is indeed to remove foods from one's diet. But the strong impression that was left behind by this article (and which is reflected in the polarized, scathing comments section) is that allergy sufferers are crazy hypochondriacs willing to accept any theory and that allergies aren't real.

I've talked in other columns about how food allergies have been polarized. One of my earliest columns was about how popular entertainment likes to portray kids with allergies as wusses. But how in the world did food allergies completely devolve from a medical condition to the place we're in today? Is it possible to rationally discuss the possible causes of food allergies without being immediately branded a conspiracy theorist?

Contempt. That's the only word that describes the current state of food allergy acceptance. Education actually seems to be resulting in less acceptance, not more.

I did end up talking to my cousin and she did run through the expected litany of bees/fluoride/plastics, etc. But the most interesting part of the conversation to me was her husband's voice in the background. If the sound of eyeballs rolling was transmittable through the phone, that's what I swear I was hearing. It was really important to this man (a corporate lawyer and a very nice, level-headed guy) to let me know he was distancing himself from the crazy broad he married.

We're getting a strong societal message here. Don't talk about food allergies. Don't read about them. Don't consider the causes. Minimize them as much as possible. It's a political issue. It's a boring issue. No one is going to believe you anyway.

How do our kids make sense of all this? They hide their allergies. THIS is why our teens are so much less safe than they could be. Don't believe me? Watch Louis CK's bit. He nails the contempt.

Of course they would never hide their allergies and take big risks.

But maybe.

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Saturday, August 3, 2013

The Food Allergy Herbal Formula-2 (FAHF-2) Laundry List

So in all the time I've been writing about our experience with FAHF-2, I have never done a comprehensive post with all the links/info I've found over the years. Consider the situation rectified! I'll add to this as I find new sources. If you have good ones, please feel free to add them to the comments as well.

My FAHF-2 Posts

FAHF-2 Trials In Chicago!

We're In

BTDT, Got the FAHF-2 Food Allergy Clinical Trial T-Shirt

Brief FAHF-2 Update

Halfway There...But the Second Half Is All Uphill

FAHF-2: The Holy Grail?

Waiting in the Wings for the Show to Begin

Other People's Experience With FA Chinese Herbal Treatment (from around the web)

Chinese pharmacy vs. through Dr. Li

For severe eczema/MRSA

New York Times article

For asthma (Vitality magazine)

An asthma patient's personal experience

Description of Dr. Li's treatment plan

Dr. Li profile (new patient appointments: Sharon Hamlin, at 212-241-1755)

Note: I received an email complaint that people were calling Dr. Li's office asking for FAHF-2 "because of something they read on the web." Technically, "FAHF-2" (and now BFAHF-2) are experimental drugs only available through clinical trials. However, they are based on a traditional Chinese herbal formula that Dr. Li does use in her practice. Also, my son does NOT see Dr. Li...our only experience with all of this has been through the clinical trial itself. 

What Is FAHF-2?

Patent application (contains all ingredients)

Phase 1 Clinical Trial Report (has very specific info about formula ingredients)

Yellow Emperor's Inner Classic

Page from Dr. Sicherer's book about Chinese herbal medicine

Breakdown of ingredients (see chart)

Wu Mei Wan (the traditional name of the treatment) - with pictures! 

Ling-Zhi (added to Wu Mei Wan formula for FAHF-2)

Very detailed breakdown with formula percentages (scroll down to "Chinese Herbals for Peanut Anaphylaxis" section)

Sourcing it yourself (article about ezcema natural treatment in Canada) NOTE: I am not recommending doing this  - simply providing a link

2012 AAAAI presentation summary (Allergy Notes)

Research Articles

Possible mechanism for how FAHF-2 works (added 8/23/2013)

Change in PBMCs (immune blood cells) seen in kids in FAHF-2 trial (added 8/23/2013)

Anti-inflammatory effects of the Chinese herbal formula FAHF-2 in experimental and human IBD.

Clinical safety of FAHF-2, and inhibitory effect on basophils from patients with food allergy – extended phase I study

Food allergy herbal formula 2 protection against peanut anaphylactic reaction is via inhibition of mast cells and basophils

Adherence to treatment (2014 AAAAI)