DS1 was diagnosed allergic to wheat, rye, barley, oats, corn, rice eggs, soy, dairy, peanuts and tree nuts.

He was eating oats, rice, corn, soy and dairy but still breaking out.  Now he would never drink milk but drank milk based formula and adored all milk products.  He drank soy milk fine.  He cried when I wouldn't give him corn.

Oh oats are contaminated with wheat and malt is barley.  Insert explicatives for what was a very simple and easy answer. 

We did challenge peanuts and tree nuts in office but those were the two allergens we were told repeatedly were the most serious. 

How many of us have heard "No worries, they will outgrow!"

Our allergist makes newly diagnosed do a one month follow up with a food diary.  He also gives a list of companies who reliably label and common pitfalls.  Love him.

Well, my dd ate baked egg from the get go and never reacted.  But, when she reacted to raw egg in an icing, the allergist told us no egg at all, to hasten her outgrowing. 

We gave her back baked egg at 10.  But, she had never had a reactive history to it.  She has actually had a negative RAST for egg done by her reg ped, but we still do avoid raw. 

But, I guess I am one of those families.  Some allergists(one I met at a lecture) would have never taken away the baked foods she always tolerated. 

Now all I can think of is a parody pamplet complete with QR codes.

So, here is FARE's new web page for newly diagnosed.

Don't have time right now to read thoroughly, but would hope they have some sort of handout for MD offices?

http://www.foodallergy.org/resources/newly-diagnosed

<wry smile at boo's post>

Yeah.  That.

Why is there not a "quick start" card with the "Top" things to know . . . and attach that to a pamphlet with other easy-to-read/digest bulleted info as to management of LTFA.  Then patient/parent can discuss with doc/nurse BEFORE leaving the office!!  (Oh, no, wait.  That takes time . . . )

And then 5 good links to reliable internet resources.  (The typical do-it-yourself situation.)

This same stuff could be done paperless with quick-scan app -- so could be read in digital form on smartphone.

But paper is good as it can be pinned to bulletin board in kitchen (some of us still use those) and shared at the supper table as family learns and figures out how to live with food allergies.

~ ~ ~

But, hell, many of us have been wanting something like that for YEARS AND YEARS.

Maybe FARE will come out with something really useful along these lines?  (To be fair, we are not newly diagnosed, so I'm not seeing what may be "handed out" at MD offices for this . . . it is likely varying and provider-specific.)

What does AAAI have?

~ ~ ~

What does AmerDiabetesAssoc and other reliable disease-specific orgs have for the "newly diagnosed"?

No need to reinvent the wheel . . . just adapt.

<waving hi to all the repurposers and lurkers; knock yourselves out>

 

GREAT point.

We 'challenged' DD with milk when she was 16mo-- because, see, WE didn't think we needed an IOFC for that one.

Allergist was a little disconcerted, but she had to admit when we elaborated that it wasn't exactly like we just handed DD a sippy cup.  We did do: a) a small, known amount, baked into muffins, followed by b) a larger but still known amount made into (wheat-free) pancakes, followed by c) a very small amount mixed into ricemilk.

No reaction, no reaction, and... NO reaction. 

She never liked milk enough that she'd drink it, on the other hand...

and as it happens, this entire notion of a challenge was somewhat flawed since she had a recurrence of the allergy at about 6yo when we started immunotherapy even though she'd been consuming milk all along....

(but I guess this goes with that OTHER thread.... )

Quote from: Mfamom on March 20, 2013, 03:04:58 PM
http://allergicliving.com/index.php/2013/03/13/parents-exposing-kids-to-their-allergens

"There's something to be learned here – if you have families who are getting what we think is the best care available, but they are still willing to do this, then clearly there's something that we're not doing, that we need to be doing," said Mudd.

You mean like "here's a flyer and call me again in 12 months?"

http://allergicliving.com/index.php/2013/03/13/parents-exposing-kids-to-their-allergens

Parents Intentionally Feeding Kids Allergens
Posted By Patrick Bennett On 2013/03/13 @ 5:45 pm In Food Allergy | No Comments

A number of parents are intentionally exposing food-allergic children to their allergens, sometimes in the misguided belief that either a small amount won't hurt a child or to "test" whether an allergy had been outgrown.

Those behind this discovery were caught off guard: "We were shocked. We were just floored," said Kim Mudd of Johns Hopkins University, lead author of the study. "It was quite clear that some of these purposeful exposures were against medical advice."

Researchers from five leading allergy clinics were trying to get to the motivation behind why 8 percent of 512 families with food-allergic kids had reported in an earlier study that their young children had been purposely exposed to a food allergen. The results from a new questionnaire survey with this group were presented at the 2013 AAAAI annual meeting. Among the 40 families in question (who often gave more than one reason for a food exposure):

• 46 percent reported believing that small exposures to an allergen would not cause symptoms;

• 42 percent experimented with the allergenic food to see if the child's allergy had resolved;

• 38 percent saw that a child was now tolerating either baked milk or egg and decided to try it in an unbaked form;

• 29 percent said they'd given a food because the child hadn't had symptoms on a previous exposure;

• 25 percent believed that small exposures would speed the resolution of the allergy;

• 24 percent gave a food because their child's past reaction hadn't been severe;

• 15 percent knowingly gave the food because they didn't believe the diagnosis of food allergy;

• 14 percent thought an allergy test showing decreased IgE antibodies meant the allergy had resolved;

• 8 percent gave the food to "test" the severity of their child's reaction;

• 4 percent were influenced by something they'd read;

• and 2 percent tried the food at home while waiting for an oral food challenge with the allergist.

The study, funded by the Consortium of Food Allergy Research (CoFAR), notes that feeding an allergen to a child is against medical advice; kids with allergies are supposed to avoid their allergen at all times. The researchers concluded that "these purposeful exposures to food reflect potentially dangerous misconceptions about food allergy among parents and other caretakers."

Next: Who was exposing the children to allergens

Click here [1] to see Allergic Living's full coverage of the 2013 AAAAI allergists conference.

As for who was exposing the child to a food, most often it was the child's mother (64 percent of the time), followed by the father (21 percent). Seven percent of the time, a grandmother tried out the food, and in one case it was a caregiver.

While all the reasons for exposure are of concern, the quarter of this group who believed that "small exposures would speed allergy resolution," suggest an alarming attempt at home-based oral immunotherapy (OIT). This is dangerous, and allergists always emphasize that this type of therapy must only be begun in a clinical setting, under the supervision of qualified medical professionals.

Lead author Mudd expressed another concern: the families involved in the study are getting some of the best allergy care and education available. They are being told their food-allergic children must completely avoid their triggers at all times. How then could these purposeful exposures be occurring?

"There's something to be learned here – if you have families who are getting what we think is the best care available, but they are still willing to do this, then clearly there's something that we're not doing, that we need to be doing," said Mudd.

The Fall 2012 edition of Allergic Living magazine informed readers of the original study, published in Pediatrics in July 2012. In it, the researchers were simply trying to learn more about preschool-aged children and their food allergies. They were surprised to learn of a high rate of reaction – 72 percent during a three-year period – among infants. They were taken aback to learn that 11 percent of those reported reactions were caused by the infants being "knowingly" fed their allergen (peanut, milk or egg). This second study was undertaken to learn about why the children were being exposed to an allergen. It concludes that, given these intended exposures among parents, it's important for physicians to offer guidance on the importance of the avoidance diet when dealing with a food allergy.

If you have any questions about your own allergic child's diet, please contact your allergist or dietitian for assistance. Remember that it is never safe to experiment at home with "testing" a food on an allergic child.

See Allergic Living's full coverage of the 2013 AAAAI allergists conference [1].

Article printed from Allergic Living: http://allergicliving.com

URL to article: http://allergicliving.com/index.php/2013/03/13/parents-exposing-kids-to-their-allergens/