Saturday, December 29, 2012

Food Allergy (IgE) Blood Tests - Part 3

It has been a long time since I wrote the post, "In Defense of Food Allergy (IgE) Blood Tests - Part Two", and since that time, I feel I have learned a little more and changed my tune, a little bit, about blood testing for food allergies.

I still believe that blood testing for food allergies can be very predictive, for foods above certain "positive predictive values" (scroll to the bottom of that page for those values) and I believe that having my daughter tested for a peanut allergy, as part of the standard childhood panel (which tests for the Top 8 food allergens and a few environmental allergens, typically), when we only suspected a milk allergy, saved her from experiencing what might have been a severe anaphylactic reaction.  We did not expect her to test positive for peanuts, but we are certainly glad we found out via the blood test and not a real-life serious reaction.

If you have a family history of seasonal allergies, asthma, eczema or any other allergic conditions, and your child starts to show any signs of issues, like eczema of their own, frequent ear infections, etc., then I still believe blood testing is warranted.  Birds of an atopic feather, tend to flock together, unfortunately.  (Also, even if you don't get blood testing done right away, as I mentioned in my Maternal Diet and Food Allergies post, there is a helpful article on how to introduce solids to babies at risk for food allergies.)

However, I now no longer believe that I should have tested for any food for which there was not a suspected reaction (beyond the standard panel).  Take a look at this list of foods, for which my daughter has been tested, along with the most recent IgE values:

The foods highlighted in yellow are the ones that were on her very first panel at 18 months of age.  They constitute the "Top 8" foods.  She tested "positive" to all except for the codfish and shrimp.  After all the confusion about taking it in and out of her diet, she eats soy yogurt just fine, now.  As for wheat, even though we declared the wheat trial a no-go, wheat is not an anaphylaxis risk on the level of her milk and peanut allergies.  She is sensitized to it, and we avoid it in her diet as strictly as we do her other allergens, as far as ingestion goes, but she plays with Play-Doh and holds regular bread to feed ducks at the park, etc.  The foods highlighted in dark pink are anaphylaxis risks.  (Well, she has never eaten an almond, but it is too high risk to find out the hard way, so we avoid all tree nuts.  She has also never eaten a peanut, but her whole peanut IgE levels have always been very high.  We have also had the uKnow component testing done for her peanut allergy and she is highly sensitized to Ara 2 h, which is linked to severe systemic (anaphylactic) reactions.)

However, from there down in the list, that is where my opinion on blood testing for allergies has changed a bit.  I used to think that blood testing had a place in the arena of trying to pinpoint the cause of eczema flares.  I don't mean to say that it has no place, because obviously, it's my daughter's eczema rash that started this whole journey in the first place.  If your child has a persistent rash and you feel food allergies might be the cause, by all means, I still believe food allergy testing is warranted.  However, if no obvious results emerge, like my daughter's milk or peanut results, for example, I'm afraid the plain, tedious truth of the matter is that you're headed for an elimination diet.

Look at all those foods I tested, trying to hunt for the culprit to my daughter's eczema triggers.  Now, I will say that I tested a few for valid reasons.  I tested almond, because it's another "tree nut" and the walnut value was very low and I wanted another "tree nut" value to support my case for avoiding tree nuts, along with peanuts.  Some people do not avoid tree nuts when their child is only allergic to peanuts, since peanuts are legumes, but I feel there is too big a risk for cross-contamination and when nuts are chopped, you cannot tell them apart, etc., so I wanted further information on my daughter's nut allergies.  Seeing that value for almonds was confirmation enough for me to fully avoid nuts of all kinds.

The testing of flax seed was also a valid use of the blood test, since she had a reaction to it and the blood test confirmed that she is, indeed, severely allergic.  As for sesame, the jury's still out on that one.  That value of 15.5 gives me great pause, but she has never eaten sesame, before, that I know of, and having that value makes me nervous about trying it.  Sesame is believed to be cross-reactive with peanuts, but there is no guarantee that she will be allergic to that, as well, so the blood test was not completely unwarranted.  

So, I guess I just wanted to add a word of caution for those receiving food allergy testing results, to be very careful not to restrict their child's diet too much, based on the results, alone.  It's a delicate balance.  You want to make sure and strictly adhere to the zero-tolerance policy for your child's true anaphylaxis risks, and check every label, every time, avoid foods that have "may contain" labels (if it's a food for which they even label!), etc., and always carry your epinephrine auto-injectors (yes, carry at least 2, at all times!), but if you've already been through initial testing, and eliminated those and there's another food that you only suspect is an eczema trigger, I wouldn't recommend doing a blood test for it.  In my experience, your best bet would be to do an elimination diet for it.

As the linked article states, you do NOT want to do elimination diets for any suspected anaphylaxis risks, but if this food has not caused any hives, itchy mouth/throat, difficulty breathing, stomach problems, or other signs of anaphylaxis, but is only suspected of aggravating eczema, it would be a good candidate for an elimination diet and not a good candidate for a blood test.  (If the food is causing any signs that point to anaphylaxis, you will NOT want to do an elimination diet, NOR would I suggest a skin prick test and I would be back to recommending the blood test!)

Sunday, December 23, 2012

Take the Fear Out of Epinephrine - Part Two

Here's a follow-up post to my original post, to add some more points that I didn't get to make, the first time around.

Point #1: More than one dose of epinephrine might be needed to treat an allergic reaction.

Even though my daughter didn't actually need the epinephrine that she received, I did notice a couple of things.  For one, despite the fact that we live literally down the street from EMS/Fire/Police, it did take them about 10-15 minutes to arrive.  (Now, in their defense, I told the dispatcher that my daughter was breathing, not in great distress, etc., so they probably did not rush, as they would have if I had said she was without oxygen, so I'm not complaining, just explaining.)  The other thing I noticed is that the epinephrine was metabolized pretty quickly.  The rapid heartbeat she experienced subsided pretty quickly and she seemed to be "over" any of the major effects by the time EMS arrived.  So, if she had been in need of that medication, she very well may have been in need of a second dose, had there been a severe allergic reaction that did not fully respond to the first dose.  Since epinephrine can wear off so quickly, you need to keep monitoring the "patient", even though EMS has been called.  You may administer additional epinephrine within minutes of the first injection, if necessary.  This leads me to my next point...

Point #2: Always have at least TWO doses of epinephrine on hand, at all times, home or away!

Given the reasons why you may need a second dose, you should always have at least TWO doses of epinephrine on hand.  This especially applies to when you are away from home.  I think sometimes people feel like they just want to carry one (if they carry one, at all...*shudder*).  However, when you're away from home, that is when you REALLY need to have two with you.  It's like when you go on vacation and they suggest you pack extra medicine, in case your trip is delayed and you can't refill your prescription from where you are staying.  Well, if you have a reaction while you're out and about and use your single dose, there's no time to run home for your second injector!  Speaking of home, that reminds me of my third point...

Point #3:  Always keep your anaphylaxis emergency kit in a particular place, with all the components together.  Check it before you go to bed, after you brush your teeth. [or insert nightly-routine-point here.]  

Even as "together" as I think I have things, I had recently done some rearranging and did not know where my daughter's rescue inhaler was, that night.  I had the EpiPens in one place, the Benadryl and Allegra were in the kitchen, and it took me a bit to find her inhaler.  Those items had all been together, but I had taken them out for various reasons and did not put them back in their spot, so I was scrambling around, looking for them.  You don't want that in an emergency.  You want everything you need, in a single location, ready to go.

Point #4: Don't let anyone make you feel foolish for having administered "unnecessary" epinephrine.

I feel like I was met with some second-guessing by one of the pediatricians when I took my daughter in for her follow-up visit.  I got the impression that she felt I overreacted in administering epinephrine.  I can see how she might think that, in the daylight hours, with the benefit of hindsight, after seeing a steady stream of sick kids march in and out, etc.  However, given what studies are showing about how ER doctors and EMS personnel are failing to properly treat anaphylaxis (this linked article requires a free Medscape account), I did not appreciate her looking at me sideways over having made the call to administer the epinephrine to my daughter, and I don't want anyone else to be dissuaded, either.  I'm not saying we should administer it whenever we feel like, on a whim, but if we truly feel that it is warranted and there are valid symptoms from the "anaphylaxis playbook" presenting themselves, then we do not need to have disapproving people's faces in our heads, making us pause and second-guess ourselves at that critical juncture.  I would much rather have appreciated a "better safe than sorry", as we know all too often the case is usually that someone did not administer epinephrine when it was needed and not the other way around.  I'd rather there be stacks of stories of people administering epinephrine and finding out it wasn't needed, after all, than to read one more story about someone who did not administer it, with tragic consequences.  If anyone gives you any flack, send them to me!

Thursday, December 13, 2012

Milk Protein in Asthma Medications

I took my daughter to the allergist to find out about a daily asthma medication, because she is at the point of coughing every time she laughs too much, cries more than a little, or runs a few laps around the living room.  This is not good.  For a child at risk for anaphylaxis, she cannot afford to have her "baseline breathing" compromised.  If she were to have an accidental exposure/anaphylactic reaction, she would literally have less "breathing room".

The allergist prescribed a combined treatment plan of Flovent, Xopenex HFA (rescue) and Veramyst (nasal spray for allergic rhinitis).  

The only problem was, I opened the pharmacy bag with the Flovent Diskus box in it and right on the front of the package reads, "WITH LACTOSE"!  Um, excuse me?!  I open up the patient insert and it reads,
------------------------------ CONTRAINDICATIONS -----------------------
•Primary treatment of status asthmaticus or acute episodes of asthma requiring intensive measures. (4)
Severe hypersensitivity to milk proteins. (4)
...and further down...
5.6 Hypersensitivity Reactions, Including Anaphylaxis
Hypersensitivity reactions, including anaphylaxis, angioedema, urticaria, and bronchospasm, may occur after administration of FLOVENT DISKUS. There have been reports of anaphylactic reactions in patients with severe milk protein allergy; therefore, patients with severe milk protein allergy should not take FLOVENT DISKUS [see Contraindications (4)]. 

Now, the seed was planted in my brain to look out for this, because I had read a Facebook post from a fellow blogger (please forgive me, as I cannot recall who it was - Allergic Child? The Eczema Company?) about unexpected sources of allergens in medications, so I can't say I was entirely surprised that an asthma medication contained lactose/milk ingredients, but I was flabbergasted that it had been prescribed to my milk allergic daughter!

I called the office back and told them that I could not use this medication and asked if they could find another one that did not contain lactose or any milk ingredients.  They told me they found one, but when I went to pick it up, it was a version of Pulmicort that also had lactose, so I sat in the waiting room and they brought me a sample of a medication called Qvar to take home and try.  The insert reads that it's for children ages 5 and up, and my daughter is only 4 years old, so my search is still underway for an appropriate medication.
(Update:  I spoke with both a friend who is a respiratory therapist and my daughter's pediatrician, and they both agree that Qvar would be safe and effective, even for a 4-year-old.)

Back to the milk protein issue, though.  Why would an allergist prescribe the Flovent Diskus to a milk allergic patient?  I went to do some research, and though I have not spoken directly with the allergist about this, it might be because she was convinced that it was not a great risk.  I must disagree, however.  My entire reason for going on this medication, was to strengthen my daughter's lungs, just in case she were to come in contact with a trace of her anaphylaxis risks (like, hmm, milk!).  It makes absolutely no sense to spin a dangerous "Wheel of Chance" every morning and every evening, with my daughter taking a puff of an inhaler filled with powder, laced with lactose, that just might possibly have enough milk protein (since the puffs are not uniform) to cause a reaction.

Here's a page from the American Academy of Allergy, Asthma & Immunology that I found on the subject:

It's a long article, and at first it seems like they are downplaying the risks, but here is what I believe to be the pertinent part for those with severe milk allergies:  (my yellow highlights are added for emphasis)

Q: Some inhaled asthma medications (Pulmicort, Advair) contain small amounts of lactose and possibly small amounts of milk proteins. Is there a real danger here for milk-allergic patients, or does it seem to be more of a theoretical concern? Thank you very much.
For many years we had advised patients that "pharmaceutical grade" lactose was devoid of milk proteins. In retrospect, perhaps no one was looking because patients had not been reporting reactions. However, occasional reactions have been noted, for example in a severely milk-allergic asthmatic patient of the late Gail Shapiro, MD who used a dry powder inhaler containing lactose. Testing of various lactose-containing DPIs (Nowak-Wegrzyn et al JACI 2004) indeed disclosed presence of trace quantities of milk protein. The exact amount was not determined, but there is a notion that lot to lot variability exists. Additionally, the amount of lactose delivered varies by device (e.g., some routinely deliver more of the lactose carrier per inhalation). The package inserts of the DPIs are now typically commenting upon their containing milk protein (associated with the lactose carrier). The product insert I viewed online for the type mentioned here (Flexhaler) did mention milk protein in a parenthetical statement associated with "lactose". Of note, the allergic response would be directed to residual milk proteins (the lactose is derived from skim milk) and not to the milk sugar itself.
As with any food allergy, individuals may have a particular reaction threshold (for example, not everyone reacts to trace amounts). It is probably the case that the trace amount in the inhaler would not trigger a noticeable reaction for most with a milk allergy. However, it has been hypothesized that inhalation of a trace amount may be more likely to cause some reaction (e.g., the respiratory mucosal route having a more direct response and leading to asthma reactions) than if the same amount were eaten (affected by digestion).
We do not have a strong understanding of the extent of contamination in various lactose containing products. There is a study of a lactose containing soy formula where no milk-allergic children reacted and the investigators could not detect residual milk proteins (Fiocchi et al Pediatrics 2003).
As an aside, about 75% of children like the one described here tolerate a small amount of milk baked into a bakery product (e.g., cookies) even though they do not tolerate whole milk proteins (e.g., cheese, milk, yogurt) presumably because the bakery product has less protein and the heating in a airy environment further alters the allergens. Unfortunately, there is no easy way to know who may have this level of tolerance (no accurate skin or serum tests) and we have seen children have anaphylaxis to milk in baked goods.
Though this child described may qualify as one unlikely to react to the trace (if any) residual milk protein in the DPI (basing this assumption on the observation that he tolerated milk in baked goods), and certainly risk/benefit plays a part in decision-making, it seems reasonable to use an equally effective treatment without this additional concern. I am not aware of a DPI that has lactose and has been proven NOT to have potential milk contamination.
Scott H. Sicherer, MD
Associate Professor of Pediatrics
Jaffe Food Allergy Institute
Mount Sinai School of Medicine
Now, I must add that the decision to completely avoid lactose-containing asthma medications is based on my daughter's specific level of milk allergy.  She has a history of reactions to baked milk, so she's not one of those with a "mild milk allergy".  I understand that her anaphylaxis risk lies in the milk protein and not in the lactose, but they cannot guarantee me that there will not be traces and it would be too great a risk for her to possibly inhale a trace of one of her top allergens straight into her lungs.  The thought of it makes me dizzy.  

Sometimes, I think they don't pay as much attention, because it's a milk protein.  Imagine if a doctor prescribed an asthma inhaler that doesn't contain peanuts, but is made with an ingredient that just might contain trace amounts of peanut dust/protein.  Would they better understand my apprehension, then?  Would they see why I don't want my daughter taking her chances morning and night, breathing that in?

The bottom line is that you need to be ever-vigilant, even when something is prescribed to you by a physician.  Read every label on everything...check, check, and check, again.  We have to stay on top of things, because doctors are so busy these days and are many seem to be on auto-pilot, prescribing the same medications day-in, and day-out, without deep thought put into the fine details of the patient's history.  We are the ones who know our children's history best.  

As always, I share this information to help you in making your own decisions, but hey, don't even trust me!  You will always have to do your own research and look into yours/your child's specific medical needs and consult with a physician and use every resource you can gather to hopefully come up with just the right plan to keep everyone healthy and happy. :)    

Edited to add:  Here is a story shared on Allergic Living's Facebook page, about peanut oil in ear drops.  

Wednesday, December 12, 2012

3D Gingerbread House Cookie Cutter by Good Cook

I am so excited about this cookie cutter I found at the grocery store, yesterday!  It's the 3D Gingerbread Cookie Cutter by Good Cook.  It cuts out cookie pieces that can be assembled into miniature gingerbread houses. :)

I have been seeing all these posts about gingerbread houses, but I've been...
  • trying to think of how I'm going to cut the right size "walls"...
  • trying to find the right "icing/cement" that is egg-free, yet strong enough to hold up the large house walls...
  • trying to think of safe candy for decorating...(I have other foods that have priority for trialing ahead of candy, etc.)
So, basically, this doo-dad takes care of all of that! :)  It comes with a recipe on the back that makes 48 "cookies", which is enough to construct 8 mini-houses (6 walls per house).

(Updated to add: The assembled houses end up being a little over 2" tall and about 2" deep and 1.5" wide.)

I had to tweak the recipe on the back, of course, even down to the spices.  My daughter tested negative to cinnamon, but it seems to make her sneezy, sometimes.  I decided to make them with a lot of vanilla powder, instead.  (You can get vanilla powder at Whole Foods, but we got ours from Authentic Foods, when we ordered our GF flour.  1/4 tsp. vanilla powder = 1 tsp. vanilla extract)

Here is my allergy-friendly tweaked recipe for a half batch:  (It made enough dough for 4 mini-houses and two big fish-shaped cookies (per my daughter's request - ha!)

Gluten-Free/Wheat-Free/Egg-Free/Milk-Free/Nut-Free Not-Quite-"Ginger"bread House Cookie Recipe
  • 1/3 c. light brown sugar (Domino brand is made with pure sugar, no added caramel color...)
  • 1/3 c. brown rice syrup (Lundberg's is gluten-free)...I did not have molasses on hand...
  • 1 tsp. vanilla powder (or 1/4 tsp. vanilla extract, though I'm not sure how the change would affect it.)
  • 1/2 c. Spectrum shortening
  • 1 tsp. baking soda
  • 3/4 tsp. Ener-G egg replacer mixed with 1 T. hot water (makes 1/2 an "egg")
  • 1/4 tsp. salt
  • 2 c. GF flour mix (I used Authentic Flour GF Classical Blend)
I am not, nor have ever claimed to be a master chef, and once again, I made a boo-boo when making this recipe, but it worked out, so I'm writing down what I actually did when making these cookies and not what I was *supposed* to do.  The cookies tasted good, to me, though... :)
  1. Preheat the oven to 325°F.
  2. In a medium saucepan, combine sugar, brown rice syrup, vanilla powder and baking soda.  (See, I was supposed to bring that all to a boil, THEN add the baking soda.  I added it all at the same time, but it seemed to work out just fine.  Feel free to follow the directions on the back of the cookie cutter, of course!)
  3. Remove from heat and stir in Spectrum, a little bit at a time, to thoroughly mix it in.
  4. Add in the egg replacer and salt.
  5. Pour the mixture into a mixing bowl and slowly add in the gluten-free flour, stirring to combine.
  6. (The instructions say to knead until no longer sticky, but I found I almost had too much flour, so I don't think that will be an issue.)  Knead the dough, and split into two balls.
  7. Place the dough between two pieces of parchment paper and roll it out to 1/8"-inch thick. (I think I made mine too thin and that's why I ended up with extra dough for the "fish cookies"...)
  8. Place house pieces on a cookie sheet lined with parchment paper and bake until edges are slightly browned, which is approximately 10 minutes.  Completely cool before decorating.
We "glued" a couple of houses together and decorated with Cybele Pascal's Allergy-Free Vanilla Frosting (scroll way down).  I could have gotten out the Wilton decorating tip set, to make it fancy, but we just put the frosting in a Zip Loc bag and cut a corner off, for decorating.  (It made for an easier clean up, too!)



Gluten free, Egg-Free, Milk-Free "Ginger"bread house
Assemble & Decorate!

Friday, December 7, 2012

Coconut Trial - Follow Up

As I mentioned in my original post, I feel I need to explain a little more of the situation, because some expressed concern over the fact that I did this food trial at home.  I know this is my fault, because I didn't fully explain the back-story, and somehow was assuming that (1) you could all read my mind (silly me!) and (2) you had been following my blog from the beginning.  I apologize for that, because I should know better and new readers (hopefully) come along, every day.  I was caught up in the excitement of having a new food available for my daughter and wanted to share that news, and forgot about the greater scope of things, for a moment.  For that I am sorry, but I am here to fill in the gaps.  It is also my fault, because I wrote:
So, after having the allergist tell me, again, at my daughter's 4-year appointment, to go ahead and try coconut or sesame, at home (which I still find surprising, but OK!), I decided to try coconut.   
There's me saying, right there, that even I think I should not be doing this trial at home!  I left out so much of the story, and it wasn't until I saw my post through someone else's eyes that I realized that.  The part I was surprised about, mostly, was that she wanted me to test sesame at home, because her blood test value was 15.5, which was a little too high for my comfort level.  Here is some of the information that I left out of the story, from the decision-making process:
  • Please note, this was a food trial and not a food challenge.  What's the difference? Well, to me, a food trial is when you try a new food, that you've never eaten before, that you have no real expectation of an anaphylactic reaction.  (The most I expected was a delayed eczema rash, which is why I was avoiding quite a few of these foods, all along, in the first place.)  A food challenge is when you have a documented food allergy, say a history of anaphylactic reactions, either with or without skin/blood test confirmation, and you are seeking to challenge that allergy with the food, to see if the allergy still exists.  Now, I understand that a food challenge is also done when you have just a blood test result and you want to add the confirmation of the oral food challenge to bring the 2 pieces together to form a true food allergy diagnosis.  However, usually someone would have tested for the food item based upon an initial suspicion, based upon an observed past reaction.  I made the mistake (yes, I will have yet another post spinning off from this, where I now feel that some of the blood testing I did was a mistake) of testing foods that I had no need to be testing.  I tested foods my daughter had never eaten, and I had no reason to suspect an anaphylactic reaction.  So, I really should not even have a blood test value for coconut in my hands.    
  • However, given that I did have a blood test value for coconut, I compared it against the thresholds for the likelihood of a true allergy.  Her value was 5.89 and the cutoff for egg is 7, 14 for peanut and 15 for milk.  Given that my daughter's confirmed allergies, for which we've been to the ER, have values of 28 and 50+, a value of 5.89 did not seem that high.  Lately, I have been dealing with excessive fears, and have been working on overcoming them.  I feel I have become too restrictive in limiting her diet.  I believe that I am absolutely appropriate with the level of vigilance I have around her peanut, egg, milk, flax and mustard allergies, because I have seen their effects (or have state-of-the-art component testing results for her peanut allergy), but for those with low test values, I am finding they are not anaphylaxis risks, and I need to loosen up on those, because she is restricted enough, as it is.
  • Also, a research study showed "there is no evidence of increased coconut allergy in children allergic to tree nuts or peanuts."
  • This is a paraphrasing of a conversation I had with the allergist:  
    • Me: I want to trial coconut, oats, sesame...
    • Allergist:  Looking at her blood test values, I think you can do these, safely, at home.
    • Me: Are you sure?  That makes me nervous.  I mean, the coconut and oats don't, but what about sesame?  Don't you think 15.5 is a little high?
    • Allergist:  This is why we don't like for people to test a wide assortment of foods [I had tested these with another allergist], because you can test a long list of foods and get positive results that don't mean anything.  You could have a moderately positive value and eat the food just fine.
    • Me:  Yes, but conversely, you could have a low test value and still have a reaction.
    • Allergist: True, but then you're never going to know with any food and the truth is you are just going to have to try new foods with her some day, that is just the way it is, and if you want to trial every single food, here in the office, you will be in here every day.  I think the risk is low, but if for some reason something happens, you know what to do.  You know the treatment protocol, how to administer epinephrine, you are prepared to deal with it.  
  • At first, I thought that was pretty crazy, but after I thought about it some more, I figured she was right.  I am on my own on a daily basis.  I cannot run down to the allergist's office every time I want to try a new food.  For example, I wanted to try cauliflower.  Was I supposed to run out and get a blood test, first?  No, I just had to give it a try.  I tried broccoli, first, and it gave her an eczema flare, later that night.  Trial and error.  I am not new to this and need to stop worrying like this is the great unknown.  Not every food is as volatile as a peanut.  These foods (though I will probably still ask to do sesame in her office - it's a seed and the value is over 15) are not high risk and I am just as prepared to deal with the fallout as the doctor's office.  I have 5 EpiPens in this house, antihistamines, asthma medications, etc.  I am down the street from Fire/Police/EMS.  I also truly was not expecting a major reaction, though my irrational nerves sure like to shake as if it was a possibility.  The rational part of me knew this was a safe and reasonable trial, otherwise I would not have been proceeding.
  • I think I just got so used to dealing with peanuts, eggs, milk, etc., and I lost sight of the fact that not every new food is dangerous.  Even though I know full well that any person can have an anaphylactic allergy to any food, even rice, I don't need to start out with the expectation that every new food is a high anaphylaxis risk.  I need to be prepared for reactions, of course, at all times, but I still need to keep introducing foods, otherwise her nutritional options will remain very limited.  
  • So, I just wanted to explain that a lot of thought, analysis, research and consultation went into this decision and this was not a "food challenge" of an existing food allergy done at home, which should never be attempted.  If your child has a peanut allergy, for example, don't try giving them a tiny piece of peanut to "see if they still have a peanut allergy".  This scenario was nothing like that and I apologize if there was any confusion.  If you have any questions or concerns, consult a board certified allergist.  

Thursday, November 29, 2012

Coconut Trial

I will admit that I have been stymied by fear for a long time, which has kept me from going forward with some of the food trials on my list.  As I have said before, conditions have to be just right for me to have the strength to do food trial.  We have added things like cauliflower, and some gluten-free flours to the list of safe foods, without incident, but I have been meaning to trial things like coconut and sesame, which she has never eaten in isolation, but for which she has a positive blood test value recorded.  Every allergist we have seen agrees that the blood test, alone, does not equal a true allergy, and I understand and agree, but tell that to my nerves!  I know that my daughter's value for coconut (5.89 kUA/L) from a year and a half ago was not very conclusive, but it bothered me that there was any value at all.  She tested negative to "queen palm", but when I researched "queen palm", it turns out it's not even the same tree that produces coconuts. :/

Anyway, since I conquered my fear of administering epinephrine, I figured I needed to translate that conquered fear into lessening my fear of trialing new foods.  So, after having the allergist tell me, again, at my daughter's 4-year appointment, to go ahead and try coconut or sesame, at home (which I still find surprising, but OK!), I decided to try coconut.  (Update: I feel that this comment, right here, needs much more exposition, and I apologize for not giving more back-story on this, so please read my follow-up post.  I don't want to give anyone the impression that they should challenge a known, confirmed food allergy, at home.  This was not an officially diagnosed food allergy that was being challenged.  This was a trial, and I will explain my distinction between the two.  This was a new food that she had never eaten.)

I read that some moms used Nutiva's Coconut Manna, which is pure coconut, and once at the right temperature, it has a smooth, creamy texture.  So, I went to Whole Foods, in search of some:
*I just saw this has a warning that reads, "Bottled in a facility that produces peanut oil."
Peanut oil supposedly has no peanut protein, yet I would not let my daughter eat anything with it as an ingredient, but now I'm wondering about the cross-contamination risk.
I waited until the next morning and gave her just a little taste on the end of the spoon.  She didn't really like the taste or texture, at first.  I didn't push and just gave her a few minutes and went about the task of trying to act cool.  After 10-15 minutes (OK, who am I kidding, it was exactly 10 minutes on the microwave timer!) ;)  I gave her another tiny spoonful of coconut and waited.  

Nothing happened, again, so I decided to wait until after lunch and try a slightly larger "dose".  After lunch, I spread a larger amount on one of her usual cookies (Enjoy Life's Crunchy Sugar Cookies) and she ate it up with no apparent reaction.  She also had another piece of cookie, after dinner.    

This is looking like a success!  This could open up quite a few doors, for us, but since I was working so long on just getting up the nerve to trial it, I really haven't even made up a list of other food items that I want to try, now that coconut looks to be an option.  If you have any suggestions, I'd love to hear them!

Information about Coconut

From Wikipedia: "The coconut palmCocos nucifera, is a member of the family Arecaceae (palm family). It is the only accepted species in the genusCocos.[2] The term coconut can refer to the entire coconut palm, the seed, or the fruit, which, botanically, is a drupe, not a nut."

There's also this quote from FAAN's website:
Should coconut be avoided by someone with a tree nut allergy?
Discuss this with your doctor. Coconut, the seed of a drupaceous fruit, has typically not been restricted in the diets of people with tree nut allergy. However, in October of 2006, the FDA began identifying coconut as a tree nut. The available medical literature contains documentation of a small number of allergic reactions to coconut; most occurred in people who were not allergic to other tree nuts. Ask your doctor if you need to avoid coconut.

Saturday, November 24, 2012

Home Court Advantage

My daughter turned 4 last week!  Unlike past years where I called the party shots, I decided to ask my daughter what kind of party she wanted to have, this year.  The other years, we had done large parties where pretty much everyone who could attend, around her age, was invited.  She is not really a fan of large groups, so this year she opted for a small party, with just a few friends, at our house.  She said she wanted to do some art, so we decided on an "Art Party" theme.

Doing the party at our house, with just a few friends, meant some extra work on my part, versus the Chuck E. Cheese's party from last year, given that I had to come up with all of the activities, entertainment, goody bags, food, etc., but it gave me the glorious benefit of absolute control of the environment, which as my fellow food-allergy moms can probably understand, is simultaneously stressful and relaxing.  I had the stress of getting a bunch of stuff done by the time the party rolled around, but I had the wonderful flexibility of doing everything on my terms, and on our "turf". :)

Normally, I would stress out about a party that spans a meal-time, but this was our party, and I had a menu planned with Alpha Tots and Popcorn Turkey Corn Dogs from Ian's Natural Foods* and some gluten-free corn bread muffins made with the HEB (our local grocery chain) mix.  I also made allergy-friendly "Crispy Rice Treats" using Erewhon*, marshmallows and brown rice syrup.  Since I spent a lot of time on getting other things ready, I went with a box cake mix this time and used King Arthur Gluten-Free Yellow Cake Mix.*  Since it calls for 4 eggs and replacing any more than 2 is difficult, the two cakes came out pretty shallow, but my guests were kind of enough to remark that it tasted more like a hybrid of a cake and a cookie, and seemed to like it (or were graciously humoring me). ;)
*--Risk of flax cross-contamination

The week before, my daughter had gone to a party with a piñata, but there was no way she could grab at all the contents, given that it was full of allergy-laden candies.  I decided the solution was to buy a pull-string piñata and fill it with toys!  My daughter just loves little toys and I figured the kids would love to have things they could play with long after the party.  I went to the store and bought a bunch of cool toys that I could fit into the piñata hole.  Some of them did not fit, and those went into another goody bag.

When it came time for the piñata, I told the kids to line up and I said, "This piñata is special - this one is full of TOYS!"  I loved how their faces lit up! :)  They were so excited!  My daughter was so excited, as well, and I was so happy to see her so happy, and I knew I could relax and let her grab at the goodies without any fear.  It was pretty funny, because the pull-string function didn't quite work and we ended up opening the bottom by hand, but they didn't mind and when all the toys came pouring out, it was fun to see them scramble for the goodies.  It was great not having to worry about any pesky allergens!

We did have one asthma-related problem, though, when I cooked the Alpha Tots in oil, since I didn't have time to bake them in the oven.  I used a high quantity of oil in a pan, since I was making so many of the tots at once, and I think the aggravated her poor little lungs, and we had to do a couple of quick puffs of her inhaler, since we couldn't get her cough under control for a while.  However, after I ran the vent for a while, and got her a little fresh air, she was back to enjoying her party.

She had so much fun with her friends, and her Grandma and Grandpa were even there to celebrate with her, so it was a really great day.  I am always so thankful when her birthday celebrations go well.  Having the "home court advantage" made it that much more enjoyable, this time! : )

Having the same lunch as her friends!

Allergy-friendly Rice Crispy Treats
Hello Kitty Pull-String Piñata
Woo-Hoo! Toys!

Comparing loot with her pal...

Friday, October 19, 2012

Take the Fear out of Epinephrine

I have re-written this post 6 times now, but each one was two miles long and I don't want my main message to get lost in the fine details of the events of the night.  So, I'm going to try and keep this really brief.  When you see how long this post is, just imagine how long the "long post" must have been!  If anyone wants more details about any part of the story, feel free to ask.

Whenever I tell one of these tales to my friends, and luckily I haven't had to tell too many of them, I like to show a picture of my daughter, from not too long after, to show that she is OK, now:
Now that I have complete omniscience about what was happening that night, hopefully I can tell the "short version" of the tale, but keep in mind that I did not have the luxury of a crystal ball, as all of this was unfolding.

Apparently, my daughter picked up a viral illness, that starts off with a facial rash, then several hours later produces a high fever and vomiting.  Unfortunately, I did not get the memo that this illness was on its way and chose this same Sunday as the day to let my daughter try a new candy.  (Halloween is coming up and she will be turning 4 in November, so I figured it was time.)  She developed the facial rash, shortly thereafter, and that put me on alert, but we had given her Allegra and decided to watch and wait.  For the past several months, I have been sleeping with her in her Queen-size bed (it's a long story, don't judge - ha!) and at 2:00 a.m. I could hear her breathing with a slight gurgle-sound and I put my head on her back and noticed she was burning up.

I got my husband and we woke her up and she immediately complained that her throat and cheek hurt, and said she wanted (hemp) milk and then said she wanted to go to the bathroom.  All of this was causing me concern.  Even though this was several hours after the candy, she has had delayed reactions to foods, before.  The fever was not on the "usual" anaphylaxis symptoms list, but everything else was setting off bells.  I had "new candy" on my brain.  I knew an illness was a possibility, but was unaware of the virus going around town and I could not be sure of what was happening to her.  I told my husband that if any new symptoms came up, I would have no choice and that we couldn't take a chance.  Just then, our daughter was shaking, saying she was cold, and she leaned over the toilet and threw up a little.  I cleaned her little face, then I grabbed the EpiPen, pulled off the safety cap, told her that I was sorry, but I needed to give her "this" medicine (she knows what it is and how it works, we have used the trainer many times) and my husband was squatting behind her, hugging her.  I pushed it into her leg, until it clicked.  She said, "Oww!" and I counted to 10.  She stayed still, thank goodness, and then I rubbed the spot for a few seconds. (Important note:  When someone is administered epinephrine, they should lie down, with their feet slightly elevated.  I had my husband pick her up and take her to the couch, to lay her down, but I should have had her lie down, right where she was already located.  "Sitting or standing up suddenly after receiving epinephrine can lead to “empty vena cava” or “empty ventricle” syndrome and sudden death."  This important information is also covered in the Anaphylaxis First Aid Training Course provided by EpiCenter Medical.)  

She didn't seem fazed, but later described to me how the medicine went all down her leg and up to her head and it made her heart go really fast, "like [my] sewing machine on the fast speed".  (I have a Brother SE-400 with the button you can push to make it sew really fast!)  She also said it was beating both slow, then fast, like on the "broidery" setting, so I guess her heartbeat was changing speeds at times.  I asked her if the shot hurt like the ones she gets at the doctor and she said the ones at the doctor's office hurt more and that confirms what I have read, about the needle being smaller than those used for vaccines.  She said the needle didn't hurt, going into her leg.  She described it going in as "smooth", which I thought was interesting.  It turns out that it was actually the amount of pressure I put on the EpiPen housing and not the needle, itself, that made her say "Ow".   

After administering the epinephrine, I called 911, as we're supposed to, and they came to check her out.  They told us about the virus going around, and I also later found out about two other little girls who had the exact same symptoms, who don't have my daughter's food allergy history.  The EMS team was very nice and said there was no charge for their visit and since we "refused transport" we didn't have a charge for that, either.  They said we could call any time, though we certainly hope we don't need their services, again, but it's good to know, nonetheless.  (Edited to add: I wanted to add a note about the fact that we "refused transport".  EMS said they were perfectly fine with that, as I told them I was concerned that she would pick up more germs in the ER, given all that was going around, and they agreed and said she would be fine.  The mandatory observation period is typically to monitor for biphasic anaphylactic reactions, but she did not have an anaphylactic reaction, so there was nothing to monitor for, and the EMS personnel said to just follow up with her pediatrician the next day.  I just didn't want anyone to be concerned that we "refused transport" against EMS' recommendation, or something.

It was a stressful night, but once it was all done, all of that built up anxiety and fear over administering the epinephrine was gone.  I am no longer afraid of it.  After seeing my daughter talk about it like it was not that big of a deal, I'm hoping she is not afraid of it, either.  I have talked to her a few times about it, since, and she does not seem bothered by it, at all.  That is the main point I want to get across.  What used to be "A-pin-I-fear-in" is now my "Epineph-Friend".  (If you aren't familiar with Kyle Dine's music for children, you really need to go to his website!  He has a song called, "My Epineph-Friend" from the album "Food Allergies Rock!"

There really is no reason to be afraid of using this medicine.  That is how we need to see it.  It's just another medicine.  I know this might sound a little bad, but it was a really easy process for me.  All I felt was a little click, and the needle is always completely out of sight.  There is a long, plastic cover that comes out over the needle and I never saw it.  It seemed just as "fake" as using the trainer, aside from my little Sweetie's "Oww!" , which gave me a little pain in my stomach.  It didn't give me the sense that I had just injected my child with a long needle, though.  I say this to hopefully put others' minds at ease, if you're worried about how it might feel to administer the medicine.  If you have used the trainer, it is pretty much just like that.

Another point I want to make is that we shouldn't be discouraged from making the call to administer epinephrine, even if it looks "iffy" and might be a viral illness.  (Plus, check out my other post on anaphylaxis posing as asthma, as well.)  As I said before, we do not have a crystal ball and have no way of knowing the future.  We could have a set of symptoms that turns out to be anaphylaxis where epinephrine was needed and the same symptoms may end up being a viral illness where epinephrine was unnecessary, as was the case with my daughter.  Which would we prefer, to have not needed it and administered it, or to have needed it and not have administered it?  The tricky thing is we have no way of knowing ahead of time, which scenario we're experiencing and by a certain point in one scenario, it would be too late.

I know that first-hand experience is always more powerful, but I'm hoping those of you reading will take my words to heart and believe me when I say that it's really nothing to fear.  We need everyone to carry their epinephrine at all times, and most importantly, use it!  

Look back at my smiling Sweetie at the top.  If she can handle it, you can, too!

I've written a follow-up post, which you can see here.

Thursday, October 18, 2012

Top 25 Food Allergy Mom Blogs 2012!

Hooray! Voting has finally concluded and Amazing and Atopic made the list at #7!  I am so very grateful to all who voted, especially those who took the time to vote on a daily basis.  The whole point of my spending time on this blog is to share information...information that I feel I didn't have when my daughter was first diagnosed.  Not every single post is pure gold, but usually when I take the time to post something, it is because I really feel that it something that needs to be shared with others...some insight that I have discovered along the way.  I know I'm not the first one to think these thoughts or connect these dots, but we need to put these revelations out there, everywhere we can, because you never know where someone is looking, or who you might reach.  

I have several posts queued up in my head, but it can be hard to find the time.   (I am a stay-at-home mom, but also a work-at-home mom on certain days of the week.)  I am currently working on a post about my daughter's first experience with epinephrine, which just happened this week, as a matter of fact.  It's a really long story, and I'm working on shortening it, because I want people to actually read it and get my main points. :)

In the meantime, if you're new here, please have a look at some of my favorite posts.  Also, if you scroll down, you will see some of my more recent posts.

Also, be sure to check out the other great bloggers on the list, including Itchy Little World, The Allergist Mom, The Nut-Free Mom, Food Allergy Mom Doc, etc.  So much to read, so little time!

Friday, October 12, 2012

The Best Gluten Free Flour Mix!

My daughter's birthday is coming up, next month, and I have been trying to find THE cupcake recipe for her party.  I've been fine with the ones I've made in the past, but they do end up a bit dense as time passes and the next day, after being in the fridge, they are definitely thick and chewy, etc.

I had ordered some Authentic Foods Gluten Free Flour Mix a long, long time ago, back when I bought Cybele Pascal's book, The Allergen Free Baker's Handbook, and I had made some sugar cookies with it and they came out good, but it was back when I first started baking allergen-friendly treats, so that was about all I made with it.  The flour seemed a little pricey to me and the shipping cost was almost as much as an extra bag of flour, so I didn't order more for a long time.  

I got busy, kept on buying King Arthur Mill's flour at the store, but I decided to place another order from Authentic Foods and try some cupcakes, using Cybele Pascal's Easter Cupcake Recipe.  I also ordered some of Authentic Food's Vanilla Powder, which you can use in the place of vanilla extract.

The new flour came in the mail, and I made a batch of cupcakes for my daughter to take to a friend's birthday party.  When the cupcakes were baking, she came into the kitchen and said, "I smell something yummy!"  When I took them out of the oven, they looked promising...When they cooled a bit and I opened one up to check the texture, I wanted to weep tears of joy!  They were SO FLUFFY!!  (Cue the image of the little girl from "Despicable Me"...)  We tasted a piece and it was SOOOO GOOD!  This was hands-down, THE BEST gluten-free/wheat-free, egg-free, milk-free, nut-free, probably-pretty-close-to-corn-free cupcake I had ever made!  Now, I am not the world's best baker, so I know this might not be saying much, but it was really good.  My daughter was really excited and told me, "Mommy, I want you to buy this flour EVERY TIME!"

I had doubts about what kind of difference a flour mix could make, since I had individually mixed flours, before, but this flour is just amazing.  It comes in a gold bag for a reason - because it's worth its weight in gold!  OK, I'm gushing, I know, but I think those of you who bake gluten-free, frequently, might understand the trials and tribulations one goes through in trying to find THE flour and THE recipe that actually tastes good enough that you don't feel bad subjecting all of your child's friends to it, at their birthday party. ;)  

For Cybele's recipe, I did make the following substitutions:
  • For the vegan yogurt, I used plain soy yogurt (that's what I had on hand)
  • For the cider vinegar, I used rice vinegar
  • Instead of granulated sugar, I used caster sugar (it's a very fine sugar, usually in a small bag)
  • Instead of vanilla extract, I used vanilla powder - no alcohol aftertaste!
The next day, I used the AF mix to make the Cake Pops/Cake Balls recipe and that came out even MORE delicious than the cupcakes and I was over the moon!  Have a look at this fluffy deliciousness:
I didn't even frost them, or anything...we were just eating them straight out of the machine (after they cooled enough, of course) and they were yummy!  The next day, my daughter did say, "They're different, but still good!" and I know that GF baked goods are just not as good once they have been refrigerated, but these were still so much tastier than the other things I have made in the past, that ended up a bit dense and chewy, after refrigeration.  

Oh, and it gets even better...I went to Google to search for more flour, since I knew I would need more for my daughter's birthday and I saw that it is now available through Amazon and even via Amazon Prime!    

Do you all already use this wonderful stuff?  Am I the last one to the delicious party?  What do you all think of it?  Send me some recipes! :)

P.S.  If you are ordering directly from Authentic Foods' website, the gentleman I spoke to from Customer Service said to enter "Priority Rate Flat Box" in the shipping instructions, at Checkout, and that might save a bit on the shipping cost.  They don't charge your credit card until they ship your order, so it might be less than what you see when you check out.  Amazon does not carry their entire product line, so if you want additional items, like their Vanilla Powder, you will have to go straight to their site.


P.P.S. I also wanted that I love how well it works, for being so simple.  My daughter has so many restrictions and I like to stick to tried-and-true ingredients and all this has is superfine brown rice flour, potato starch and tapioca flour.  So simple, yet so good.

Tuesday, October 2, 2012

GMO Hypoallergenic Milk Looks HYPERallergenic to Me!

I just saw this article posted by the Facebook pages of both Allergic Child and A Gift of Miles:

Here is a quote from the article: (my emphasis added in bold)

This special calf, conceived through genetic modification and cloning, produces milk that contains no detectable levels of beta-lactoglobulin (BLG), the protein that is believed to trigger allergic reactions.

What's more, the hypoallergenic milk from this calf appears to be even more nutritious than regular cow's milk, as it contains double the amount of the healthy milk proteins known as caseins.
(Updated 10/3 after my head cleared a bit from the initial shock.  Thanks to the author of  the blog End Eczema for reminding me that BLG is the main protein in whey.)
This looks like sheer madness to me.  They mention the protein (BLG) that they "believe" triggers allergic reactions.  (BLG is the main protein in whey.)  Well, we KNOW that CASEIN causes allergic reactions!!  So, why in the world would you go and DOUBLE the amount of the deadly protein (to those with milk protein allergies) in your new, supposedly "hypoallergenic" new milk?  I am completely flabbergasted.

Allow me to share my daughter's blood test results from the component testing I had done.  On the List of Allergies page, I have the following:

Alpha-lactalbumin: 1.55 kUA/L
Beta-lactoglobulin: 6.48 kUA/L
Casein:                59.10 kUA/L

Cheddar Cheese:  18.50 kUA/L
Whey:                  18.20 kUA/L

The PPV for milk is 15, not that we need that, since we have various confirmed reactions, including a trip to the ER to confirm that allergy.
So, there you can see the IgE values for the BLG, which is only 6.48 versus the 59.10 for casein.  Which one do you think concerns me more?  To me, that new "hypoallergenic" milk might as well be napalm, if it has twice the amount of casein proteins in it.

Though I appreciate the intent, in trying to produce a "safe" cow's milk, it appears that they have, instead, reduced the protein that I was less concerned about and doubled the one most dangerous to my daughter.  Thanks, but no thanks.  I don't want that kind of milk out in the world, making every other milk-containing product that much more dangerous for my daughter to be around.

I would love for an allergist's opinion on this subject.  How can they reduce one allergen, while doubling another that is already known to cause anaphylaxis?  I just don't see how that is supposed to help.

Edited to Add: Here is another link, shared by The Eczema Company, on this developing story: 

The more I read, the less I like...Also, this second article mentions that we don't even need do this kind of thing to remove BLG from milk.  I once had a notion in my mind that perhaps GMOs might serve a good purpose for helping those of us in the allergy community, but this is not a good example.  That poor cow has no tail and they don't know why!

Sunday, September 30, 2012

Maternal Diet and Food Allergies - My Thoughts

I'm not a doctor, scientific researcher, nutritionist, etc., so the following is completely speculative.  Based on my personal experience, my thinking aligns with the theory that what a woman eats during pregnancy and/or during breastfeeding plays a part in the food allergies that her child develops, IF her child was going to develop a food allergy in the first place.

So much focus is put on peanut allergies, because of their prevalence, and I think it's hard to nail that down, since so many people ate nuts while pregnant and some kids ended up with nut allergies and some didn't.

However, let's take a look at my own personal case daughter.  She has one particular severe allergy, that is not very common.  She is highly allergic to flax seed.  How many people do you know with a severe flax seed allergy?  Do you even know anyone with a flax seed allergy?  Maybe if you're in the food allergy circles you do, but I don't know anyone else around me, locally, who has an allergy to flax seed, other than my daughter.  How did she get so "lucky"?

Hmm, well, when I was pregnant, I ate Voortman's Flaxseed Oatmeal Cookies at least once a day, every single day, for my entire pregnancy.  I ate them even before I got pregnant.  It was my "go to" snack.  I kept them in a cookie jar on the counter and it was an easy thing to grab.  I ate them like they were going out of style, and they actually did...My local store stopped carrying them when my daughter was a few months old and I had to stop eating them and I was bummed.  So, I had also been eating them while I was nursing.  (I only made it to about 4 1/2 months of nursing.)  The ingredients in the cookies were wheat flour, flax seeds, ground flax seeds, eggs, etc.  So it basically had double flax seed.

I am a creature of habit and tend to eat the same thing every day for long stretches of time.  Back then, I was eating a Jimmy Dean D-Lights breakfast croissant, but I would take out the turkey sausage, so it was just cheese and egg white.  I ate lots of cheese back then.  I also ate some peanut butter and jelly sandwiches when I was pregnant, which I never wanted any other time.

So, I was eating peanuts, cheese, eggs, and flax seed by the pound...What are my daughter's top allergens?  Peanuts, milk, eggs and flax seed!  (By the way, I get so irritated that they keep adding flax seed to everything for "Omega-3" purposes.  Use hemp seed, it's better!  Anyway, I digress...)

I think with the peanuts, milk and eggs, it's easy for people to dismiss the maternal diet connection because they say "everyone eats those things", but not everyone eats tons of flaxseed and not everyone's child ends up with a severe allergy to flax seed.

As I mentioned at the beginning of my post, I believe this is for children who were "going to develop a food allergy in the first place".  How can you know if that will be the case for your child?  Well, you certainly can't know for sure, but I found an article on, that concisely summarizes what I am always telling people about the predisposing factors for a potentially food-allergic child:

So, given what I've experienced, I'm still not sure what one should do, if they suspect their future child is "at risk" for food allergies.  I joked with a friend, the other day, that perhaps they should just eat some rare food, say, rutabagas, that they don't really like, and hardly ever encounter, so their child would end up allergic to that, and then they could easily avoid that down the road.

I know that's not a realistic solution, however, but I was just trying to bring a little levity to the situation, as I often do.  There are so many recommendations, and we may never know for sure which one is the "right" one, and I really don't think there is such a thing, since every "body" is different, but I just wanted to share my experience and see if it triggered any light bulbs for anyone else, who might have more insights.

I'd also like to share this other helpful article I found on, about feeding an at-risk infant:

I wish I had this article back when my daughter was born...That, and the knowledge I have now about food allergies!

Thursday, September 27, 2012

Top 25 Food Allergy Mom Blogs - Please Vote!

Good morning! Amazing & Atopic has been nominated, as one of the Top 25 Food Allergy Mom Blogs for 2012 on Circle of Moms!  I remember when I was nominated, last year.  I was so humbled and incredulous, being listed next to so many great bloggers, given that I was just starting out.  I still feel like a "newbie" in this blogging world, but being on this list helps me further my cause - sharing information with others, letting them know that they are not alone...telling them the things that nobody ever told me...I want to continue to share what I learn, as I go along, with as many people as I can, to hopefully save others from making the mistakes I have made, sharing stories and the occasional recipe, or cool find along the way.


So, if you'd like my blog, or would like to help me put my blog in front of more people, please click on the badge above and vote for me!  I am grateful for every click!

Please note that you can vote once per day, through October 17th and daily votes are crucial and much appreciated.  ♥ 

While you're there, you will see a list of some wonderful blogs, with a wealth of information for your perusal! 

Thursday, September 20, 2012

Anaphylaxis Posing as Asthma

In the 2011 Special Edition of Allergy & Asthma Today by the Allergy & Asthma Network Mothers of Asthmatics, there was an article titled, "When Anaphylaxis Looks Like Asthma".  The article shared the heart-breaking stories of Sabrina Shannon and Emily Vonder Meulen, who died after suffering what appeared to be severe asthma attacks, yet turned out to be anaphylactic reactions to accidental food allergen exposures.

As I wrote in one of my previous posts, my daughter had an anaphylactic reaction, after eating a few corn muffins that I made with flax seed in it (I was unaware of her severe flax allergy at the time), when she was 3 weeks shy of her second birthday.  The thing is, I had no idea that what was what was happening to her.  We are so incredibly lucky that she survived the reaction, and I wanted to take the time to go over the events of that incident, as a learning experience for others.

I was about 5 months into life as a "food allergy mom", getting used to baking with substitutes and such, and trying out new recipes.  Since my daughter was highly allergic to egg, I was trying out one of the options, which was flax seed.  I had tried it once before, in a cupcake and it made the cupcake nice and fluffy.  I thought it made my daughter a little itchy, but I wasn't entirely sure, so we were going to give it another try in a batch of corn muffins.  My daughter thought they were delicious and gobbled down a few mini-muffins.

A little while later, she threw up her corn muffins all over me.  (Thanks, as always, to Facebook, for helping me keep track of the was my status update from that moment: "Well, I think it's safe to say that Morgan's sick...she threw up copious amounts of corn muffins, all over me...I think giving birth shut off my gag-reflex, because it didn't faze me one bit...")  That was at around 6:30 p.m.  By around 8:30 p.m. I was posting on Facebook that she was all smiles.

Then, there's another post from me around 11:00 p.m. about some random news article, which reminded me that I was up, messing around on the computer.  That's when the memories came back to me...

We have (and still use) a baby monitor and even without it, I could hear with my "Mommy ears" the most unsettling noise, coming from my daughter's room.  I could hear an odd sound in her breathing.  She was making this "kuh" sound.  It reminded me of the sound my mother would make (a heavy smoker and NOT the sound I wanted to hear from my precious baby).  She sounded like she was having a little trouble breathing, so I went in to check on her.  I got my husband up and we both went in there and turned on the lights.

She was sleepy, but usually if I had come in there, she would have wanted to talk to me and would have been more alert (she has never been much of a "sleep through the night" kind of child and would love any excuse to get up).  She was a little wheezy and we were certainly nervous.  We were still learning about how to manage her asthma and I thought she was coming down with something, like a virus.  My husband and I were talking it over, like should we turn on the hot shower, should we do a breathing treatment, etc.  I decided to go get her puffer-spacer and do a breathing treatment and we did the warm shower thing, thinking it was an asthma flare.  That helped only marginally, but we thought it was all we could do.  She seemed stuffy, as well, so I decided to hold her upright in the glider, because there was no way I was going to put her back down in the crib.  

I took her to the changing table to see if she needed a fresh diaper and to let her cool off a little, because she seemed warm.  When I opened her pajamas, her chest was sucking slightly inward and I told my husband that didn't look right and it looked like she was working hard to breathe.  When we offered her the (non-dairy) milk bottle (her favorite thing in the world) she could barely hold it up to her mouth and we knew something was wrong.

I called the nurse line and this was her advice: "If the child is wheezing, flaring nostrils, labored breathing, rapid shallow breaths, but no blue lips, then go to the ER.  If their lips turn blue and/or there's wheezing that can be heard across the room - dial 911!"

We took her to the ER and as you might have read in the other post, she was diagnosed with an ear infection and bronchitis, but I now know it was an anaphylactic reaction to the flax seed.  The "dipping in" that her chest was doing was "retracting".  (For an excellent article, check out: How to Detect Breathing Problems in Children)  That can be very dangerous, especially for a child with asthma and one who is experiencing an allergic reaction.  Those are the images that stick in my mind.  I was just standing there, looking at her chest suck inward, perplexed, not knowing what to do.  The problem was, we were looking at this from purely a breathing/asthma perspective and forgetting that we are assessing an allergic child, here.  We were missing the bigger picture.  What about the fact that she had eaten muffins, then thrown up, and was now progressing to breathing issues?  Instead of missing the "forest for the trees", we couldn't see the "anaphylaxis for the asthma".  Luckily for us, we got her to the hospital, and it didn't escalate very rapidly, and she was OK.

In the article I mentioned at the beginning of this post, their advice is, "If patients with a food allergy and asthma have a sudden onset of severe asthma symptoms following food ingestion, they should presume that they had an accidental ingestion of their food allergen and immediately use their epinephrine."

Now, we didn't know she was allergic to flax at the time, but that really should not have mattered, because the signs of a reaction were there (vomiting, then breathing difficulties), and that is what would have happened with an accidental exposure, or in her case, exposure to an undiagnosed allergen.  I had no reason to expect a reaction from those muffins, yet there it was, happening in front of me.  We have to learn to react to what is happening in front of us, and not what we expect (or don't expect) to happen.  The problem is, we're not born knowing what to look for, so that's why I'm sharing this information, so hopefully we can all learn.  My daughter's experience was not as clear-cut as the examples in the AANMA article, but I still wanted to share the story and the information, because it's something of which we must be acutely aware, for those of us with children with food allergies AND asthma.

On FAAN's Food Allergy Action Plan, it reads: 
"*Antihistamines & inhalers/bronchodilators are not to be depended upon to treat a severe reaction (anaphylaxis). USE EPINEPHRINE."