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Author Topic: Food Allergy Newbie  (Read 1583 times)

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Offline jquall

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Food Allergy Newbie
« on: May 02, 2014, 08:21:16 PM »
Help!  I have so many questions!  My 7yo was just diagnosed with milk/egg allergies by our PCP after several weeks of unexplained areas of hives on various parts of her body.  She was on the low end of "moderate" levels per blood test, with mild being a bit higher than eggs, and I feel like I need more information.  Do you think she needs to completely eliminate every single thing that has even traces of these things or is mfr'ed on shared equipment?  Or should I just avoid the main culprits like yogurt, cheese, etc.?

She also came up mid-moderate on cat dander, but we refuse to put our cat out, so the PCP suggested adding Zyrtec to her daily regimen of Singulair and Flonase for sinus issues (which, in retrospect, are probably food allergy-based!), and that combined with food elimination may be enough to help the symptoms.

Would love to hear thoughts--many people I hear from are "extremists", so I'd like some balance opinions.

twinturbo

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Re: Food Allergy Newbie
« Reply #1 on: May 02, 2014, 08:49:07 PM »
I think Kitty is safe.  ;)

The first thing I would say is read up on extensively heat treated egg and milk. Your child may have a threshold that allows for it. Egg and milk proteins denature with application of heat. Stick to reputable sources like Mt. Sinai, Johns Hopkins, National Jewish (Denver), Duke, related peer reviewed papers. All data at this time point to *where and when possible* eating heat treated hen egg and cow's milk.

Now, that'll require getting to a board certified pediatric allergist with good, current knowledge of best practices and protocols. We might be able to find someone. PCPs should not be practicing as allergists.

You'll need to get an EpiPen (or other epinephrine autoinjector of choice) and an emergency action plan to go with it which should include training on how to use the device, when and follow up with EMS.

I'm sure others can fill in the gaps with what I missed.

P.S. The testing numbers won't mean much compared to her reaction history. Keep in mind it's not predictable. You'll need all the data points including dynamic situational stuff to perform personal risk-benefit calculus. For example, you probably don't need to worry about someone eating a cheese stick at the playground. However, you probably don't want to sit around inhaling powdered milk either. Which means 20 Swiss Miss cocoa packets opened in one room *could* be a problem. Or an angel food cake mix with concentrated albumin and possibly milk.
« Last Edit: May 02, 2014, 08:53:46 PM by twinturbo »

twinturbo

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Re: Food Allergy Newbie
« Reply #2 on: May 02, 2014, 08:59:12 PM »
You know, before we even go down the food allergy road which is NOT insignificant, hives can come from a lot of stuff even environmental and virus. It could be food, it might not. A PCP did not do you a favor by performing these tests and interpreting it on his or her own.

Get the Epi script until you get to an allergist. Then you might have to do a few in office food challenges with the doc. Tests don't confirm the allergens, the rate of false positives is way too high. My child is peanut allergic but tests positive to cow's milk. He's not allergic to cow milk, same for soy.

Offline LinksEtc

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Re: Food Allergy Newbie
« Reply #3 on: May 03, 2014, 07:14:38 AM »
Help!  I have so many questions!  My 7yo was just diagnosed with milk/egg allergies by our PCP after several weeks of unexplained areas of hives on various parts of her body. 

Did there seem to be a clear pattern where she would eat eggs and/or milk and then get hives soon after?  Before being diagnosed, was she sometimes/often able to eat eggs and/or milk with no symptoms?  Has eliminating milk & egg helped with the hives?

She was on the low end of "moderate" levels per blood test, with mild being a bit higher than eggs, and I feel like I need more information.  Do you think she needs to completely eliminate every single thing that has even traces of these things or is mfr'ed on shared equipment?  Or should I just avoid the main culprits like yogurt, cheese, etc.?

The results of blood tests need to be put into context by an expert doc.  I would agree with TT that you should see an allergist who is up-to-date on FA.

Until you see the expert allergist, I would play it safe and avoid all milk & egg.  The allergist should be able to confirm whether those are true allergies, whether something else is going on, and advise you on what level of avoidance is necessary for your dd.

Do you have epinephrine and a "food allergy action plan" aka "emergency care plan"?  I would make sure that whoever is watching your dd has these things & and is trained in how to handle a severe allergic reaction.


 :grouphug:


« Last Edit: May 03, 2014, 07:16:19 AM by LinksEtc »

Offline jquall

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Re: Food Allergy Newbie
« Reply #4 on: May 03, 2014, 12:29:47 PM »
Good input so far.  Interesting, I asked our PCP if she needs an EpiPen and was told no since she's not that severe.  Also, the only mention she made of an allergist is if after we've tried everything else there is still stuff going on.  However, my daughter is on Medicaid (I'm a single, uninsured mom finishing grad school) and the few allergists I called around here do not take it.  So maybe that's why my PCP didn't bring it up.
 
I've read so many different things, from how quickly allergies can go from mild to severe, to how she should be fine as long as she is not drinking straight cow's milk, that it's really hard to know what steps to take. 

I do sorta believe the milk test results could be true, because as an infant she reacted to my breastmilk differently if I'd had a lot of dairy beforehand, and when we switched to formula, I need up changing from milk-based to soy-based because of horrible bloating and gas.  As far as eggs, she is not really fan of them by themselves anyway, but we'll have to stay away from baked goods and noodles, and things like that.  It's too early to tell if it's making a difference yet as this all just happened on Wed. 

Still loving the input though :)

twinturbo

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Re: Food Allergy Newbie
« Reply #5 on: May 03, 2014, 01:03:09 PM »
Yeah, that's not sound medical advice which is why PCPs should not be practicing as allergists. The problem is when a PCP has convinced his or herself to the contrary.

Here's the thing: we (on the board) will have no idea what your daughter is actually reacting to. Could be a food, might not. If it's a food could be milk and/or egg, might not. I'd jettison the idea of extremism as a preoccupation because it's a relative term and right now you need more accurate medical terms with specific application.

We know

*your daughter is experiencing hives. But...

Is that the only symptom? Swelling, stomach pain, nausea, diarrhea, itchy tingly lips and throat, tightness in throat, wheeze, lungs feeling squeezed within 20-30 minutes of ingestion?

* RAST (the IgE blood test) shows some positives to milk and egg. But...

It's a little odd to suddenly develop reactions to milk and egg starting at age 7 with a history of tolerance. I mean up until a month ago she was eating it sans symptoms.

The facts are she IS presenting with sounds like IgE-mediated symptoms of at least hives. That's what you have objectively observed. She may or may not be experiencing something she has not reported. The only sure predictability about IgE-mediated reactions is that they are unpredictable. You do not want to worry about 'extremism' or the appearance of it when a reaction presents that needs emergency meds and to follow with an emergency action plan. In other words you don't want to be in a "Huh. Thought anaphylaxis wasn't supposed to happen" moment with jack squat you can do about it.

You'll need the PCP to write the script for a device. I'm agnostic about devices it's the same substance but EpiPen is the industry standard. It's prescribed based on weight. If your daughter is over the 50 lb mark most allergists would bump up to adult strength. Epinephrine is adrenaline it's really hard to hurt yourself with it unless there's pre-existing conditions that make could increase risk.

Which is why said patient needs a board certified pediatric allergist. Mylan manufactures EpiPen there's a coupon on their website to reduce or eliminate out of pocket expense.

In other words it's not about being extreme or cavalier--it's going to take more data, the appropriate professional to determine and interpret those multiple data points with respect to current best practices, and balancing what must be done with daily life.

Ever had an allergic reaction? I have. That feeling that your body's doing things it shouldn't from a normal healthy food--crazy and scary. But it is what it is and you gotta do it right. You're on the right track in wanting to find the balance but deciding what is required without more data is wishful thinking confirmation bias.

It may end up that your daughter minimally has generalized systemic IgE-mediated reactions to common food proteins and environmental allergies. She'll need her caregivers to be educated and ready to deal with an allergic emergency when it happens and to employ necessary and appropriate preventive strategies for avoidance.

In summary neither extreme nor cavalier, but methodical. There's an established medical process. FAS as a community is comprised of members pretty dedicated to that even though we're spread out on the bell curve of allergens, single or multiple allergen, co-morbid with asthma, threshold, and history of anaphylaxis, OAS, pattern of outgrowth or persistence.
« Last Edit: May 03, 2014, 01:36:50 PM by twinturbo »

twinturbo

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Re: Food Allergy Newbie
« Reply #6 on: May 03, 2014, 01:09:38 PM »
You mentioned grad student. Are you by any chance a TA or graduate teaching fellow? We had insurance covering the kids while my husband was in grad school. It wasn't 1.0 FTE but at .5 it was enough to qualify under university plan.

Offline jquall

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Re: Food Allergy Newbie
« Reply #7 on: May 03, 2014, 04:28:00 PM »
 twinturbo:  very good points, especially about what else she has been experiencing that is not noticeable to me.  This is also a consideration because she has already been on Singulair which may be keeping other reactions at bay "for now".  I put a call into the dr.'s office requesting a call-back for more information, and I will ask for referral.
Unfortunately, I'm not a TA or anything, but I am almost done--just summer semester left  :happydance:

Offline lakeswimr

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Re: Food Allergy Newbie
« Reply #8 on: May 27, 2014, 06:49:38 AM »
Did the hives happen after she ate?  Food allergy reactions start within minutes to up to 2 hours of eating a food.  If your child was getting hives from milk and/or eggs it is important to avoid them.  But if your child wasn't getting hives from them then you are spending a lot of effort for nothing.

You should insist on epi pens asap because if the hives were from food then reactions can change in the future.  The longer you avoid an allergen the worse future reactions can be.  The point of avoiding is to avoid reactions, not to make an allergy get better.

Test results are not very accurate.  They have a super high false positive rate and the level of the test is pretty meaningless as well.  A positive test without any reaction history doesn't mean anything.

If your child is tolerating baked egg and baked milk I would continue with those as that is tied to outgrowing those allergies.

I would want to do food challenges in the doctor's office before I declared my child allergic.

If you knew for sure she ate milk and egg products and got hives right away then that would be different but you sound like she just had mystery hives so you really do not know what the cause was.