13 month old went into shock

[OptimisticMom]

Last week my 13 month old went into anaphylactic shock. I've had her blood tested for a few allergens, soy being one of them, and she came back positive for everything that I presumed that she was allergic to with the exception of soy. Soy came back negative which shocked me because she's breastfed and when I consume soy she always seems to have the biggest reactions. Well, that was a few months ago and I'm really struggling to find foods that she can eat, she has a LOT of smoothies with lots of dark greens, apples, pears, bananas, blueberries, etc. and then chicken, beef, grains etc. at dinner.

Anyway, last week I picked up a marinara sauce that had soybean oil listed as a minor ingredient. I wasn't going to buy it but then thought I was being TOO cautious because she tested negatively for soy. Well, the test was wrong and I should have trusted my gut. Her eyes were swollen shut, ears swelled to twice their normal size, projectile vomiting EVERYWHERE. I completely 100% freaked out. I called 911 and gave her an Epipen Jr. shot. I'm not sure which one of us was crying harder. My wonderful 2 year old was holding her baby sister's hand though all of this, sweet thing that she is and was excited to meet all of the emergency people who responded to my 911 call.

Our follow appointment with her allergist is coming up this Tuesday and I'm honestly so lost on what to ask and what to do. My almost 3 year old, myself and my husband have absolutely no food allergies and our 13 month old is allergic to dairy, eggs, peanuts, pistachios, cashews, and obviously soy.

This makes meal planning and cooking so difficult, especially since the almost 3 year old wants to share all of her treats with her baby sister. I want to attempt to try cooking meals with vegan and soy free butters or coconut substitutions but I'm truly terrified of even giving her a taste of something that will cause another major allergic reaction.

How do other parents deal with this stuff?

TIA! And thank you so much for this board. Other parents that have never experienced their own child going into anaphylactic shock simply don't understand the terror that food allergies presents into something so seemingly harmless.

[momma2boys]

I'm so sorry, how scary. I think for now you will have to go as basic as you can. Think clean eating. Chicken breast, veggies, potatoes, fruits. Did they do any skin testing? When my ds was that age they would only do skin tests and only four foods, egg, milk, peanut and dairy. He said at that age testing isn't real reliable.

[CMdeux]

How do other parents deal with this stuff?

Exactly as you have, I fear-- with a lot of tears and eventual grey hairs to show for the stress.     I'm so sorry-- just know that I remember that horrible time in my life as a parent. 

Once you adjust, it's not so bad-- at least until something rocks the boat by taking you out of your routine that keeps things safe and manageable.

One thing to note-- I never found anything "vegan" that truly worked for my DD when she was soy- and nut- allergic.  What I did find was that "vegan" seemed to almost be CODE for "contains soy.  And is at the very least highly contaminated with one or more tree nuts"

I don't know if that is still strictly true, of course, since that was years and years ago now (DD is 15).

I've held my baby during a horrific reaction-- and experienced that horrible, deadened sense of just, well-- awfulness when she quit screaming, too-- I know how you feel.  PLEASE know that it gets better.  Even if the allergies persist-- it gets better.   


As Momma2boys suggests-- VERY simple foods, as unprocessed/whole as you can find them-- that is the key.  PLAIN chicken, steamed veggies mashed with potatoes, that kind of thing.

We found that olive oil was pretty much useful in anything that called for another fat-- and we used to put it in smoothies, too.  I'll caution you about coconut products-- we've been wary since DD reacted to some that was sourced from Thailand when she was 2.  That was one UGLY reaction.  I think it was probably peanut, but the company and I simply couldn't figure out HOW the contamination could have occurred.

[OptimisticMom]

Thank you so much for your replies!!

We had skin testing done when she was 8 or so months old and that was for the top 7 allergens (dairy, soy, corn, fish, peanuts, eggs, and something else) but the only one that tested positive was dairy. At 11 months she had some blood testing done but holding a baby while her blood is being drawn is torture for all involved. I've been breastfeeding her too so I've mostly restricted my diet (silver lining: a very basic diet and breastfeeding is a surefire way to drop the baby weight! LOL) but I had a glass of wine last night and then breastfed her this morning and she broke out into terrible hives. It's like what is it NOW? Ugh.

I've been trying to go very basic with her diet. I made chicken noodle soup from scratch, with corn noodles and seriously starting with a whole chicken and water in a pot. Turns out she's allergic to celery too. She had MASSIVE hives from my allowing her to teethe on a celery stalk while I was cooking. Mommy fail. Yesterday we had plain tomatoes as a side with dinner and those gave her a topical rash all around her mouth. Tonight its plain brown rice, plain black beans, corn tortillas and plain chicken but no hives, no rashes.

Is everyone in your family eating really clean too? I guess the other thing I'm concerned about it making her feel polarized. I want our home and our meals here to always be safe for her, especially since as she gets older I imagine that she's going to be singled out somewhat when it comes to gatherings and events where meals occur.

What do you guys do for milk substitutions or do you skip it altogether? I tried giving her quinoa milk and she HATES it. Which I thought was significant coming from a kid on pretty strict fruit and veggie diet. LOL

[hezzier]

Yesterday we had plain tomatoes as a side with dinner and those gave her a topical rash all around her mouth.

I'm not sure what to say about the celery, but this could be purely due to the acid content of tomatoes...especially if she's got sensitive skin/twitchy skin.  That being said, I just reread your first post and it was a marinara sauce that she reacted too...maybe it's worth investigating tomato a little further.  Make sure to write all these things down so you can keep track for the next time you see or talk to your allergist.

[OptimisticMom]

Yeah the celery allergy reaction really threw me but because I gave her a lone stalk there was nothing else it could have been. I was even more surprised when I read that celery allergies are becoming an increasingly common thing. Per Wikipedia:

Celery is among a small group of foods (headed by peanuts) that appear to provoke the most severe allergic reactions; for people with celery allergy, exposure can cause potentially fatal anaphylactic shock.[16] The allergen does not appear to be destroyed at cooking temperatures. Celery root—commonly eaten as celeriac, or put into drinks—is known to contain more allergen than the stalk. Seeds contain the highest levels of allergen content. Exercise-induced anaphylaxis may be exacerbated. An allergic reaction also may be triggered by eating foods that have been processed with machines that have previously processed celery, making avoiding such foods difficult. In contrast with peanut allergy being most prevalent in the US, celery allergy is most prevalent in Central Europe.[17] In the European Union, foods that contain or may contain celery, even in trace amounts, must be clearly marked as such.[18]

We've successfully done marinara in the past, that's how I know it was the soybean oil in it this last time. I'm a thorough label reader when I know she'll be eating processed foods. Maybe raw tomatoes are more acidic than cooked ones?

[rebekahc]

So sorry you're going through this!  Several of us have been there done that. 

A couple of questions/observations...

1.  Who has done her testing?  If they told you corn was a top allergen, they were wrong.  The top 8 are wheat, soy, dairy, egg, peanut, tree nut, fish, shellfish.  A long time ago (like 20 years), corn was considered a top 10 allergen, but they dropped that.  Since you mentioned corn as a top allergen, it made me wonder if the doctor is not up to date on food allergies.

2.  Although the sauce had soybean oil, I wouldn't assume that caused the reaction though it is a possibility.  I don't think it would hurt to explore other ingredients and cross-contamination just in case since soybean oil has very little soy protein.  We've found many packaged marinara sauces contain cheese, so even if it's not listed cross contamination could be a possibility - same with contamination from nut-containing pestos.  The seasoning in the sauce may have had celery, too (if that's an allergen for her and not just due to twitchiness as mentioned below).

3.  Coming off a recent reaction, her system is "primed" and you may see her hiving/reacting to things she's not really allergic to for a few weeks until things calm down again.

ETA:  just because you've done the marinara before doesn't mean it wasn't cross contaminated or that she hasn't developed an allergy to one of the ingredients.

[CMdeux]

To add to Rebekah's excellent post-- yes, when DD was so sensitive and little, most of her allergens simply weren't in the house at all.  The reason for this was/is twofold:  number one, it was my own selfish need to have SOMEWHERE that I could let down my guard just a little-- the years from 0 to five probably took two decades off of my own life, I swear-- and secondly, I wanted a place that was safe enough that I could allow DD some normal developmental space.  EVERYTHING else, EVERYWHERE else, I was constantly snatching her up and away from dangers.  It was crazy-making.  I had to have a place where I knew the risk was minimal, where I could allow her to play just out of sight, and roam around touching/mouthing things like a normal toddler. 

I still recall a friend stating to me when my DD was nearly three and I'd just slapped a hand and snatched her up into my arms that "you can't stop them from picking things up off the ground-- it's a developmental thing" and then she and I just stared at one another, and she realized that my choices were pretty bleak, there-- normal development or a living child.  I chose the latter, obviously, but it was at the cost of some normal developmental exploration.  At least in an allergen-free home, they can still be toddlers.

Anything that has triggered anaphylaxis from cross-contamination, (for any member of the household) is an off-limits thing in the house.  That's just sort of our house policy, though.  We do occasionally bring in allergens for direct consumption, though-- for example, I will sometimes have a sandwich that has mayo on it.  But I'm VERY careful, and I didn't even do that back when DD was still so allergic to egg that she couldn't do things made on shared lines at all.  When DD outgrew her wheat allergy, I can still remember buying a bag of flour, which was something I hadn't done in four years. 

Our house is now peanut, walnut, pistachio, cashew, and shellfish free.  We're not entirely soy free, nor milk-free, nor egg-free (anymore).   But there are still some things that some household members can't/don't eat, and we're careful.     

[OptimisticMom]

Skin testing was with the first allergist. We're now onto a new one, he was the one that suggested blood testing. He's basically said that we need to wait until she's a little older (which was a few months ago) to do more accurate testing. He also told me that because she's so young she could very realistically develop more allergies.

My jaw dropped at cheese being in marinara but then not because I check labels. This was a Whole Foods brand organic marinara and the allergen information on the back of the jar listed soy as the only allergen. It said that it was possible that cross contamination could have occurred with tree nuts and I think milk. But I think EVERYTHING has cross contamination warnings. Even the Organic Rice MumMums that I give her (which blessedly, she does not react to in the slightest) has a possible milk cross contamination warning on it. But I didn't know that about soybean oil and soy protein. Now I'm kind of scratching my head again, but the celery observation is a good point too but I'm pretty sure I didn't see it listed in the ingredients but that's not to say the cross contamination didn't happen and/or wasn't enough to cause her reaction. Do you guys just stay away from processed foods entirely? How are there not entire lines of food product out there that are specifically geared towards food allergy kids? Or are there and I just don't know about them yet?

Your 3rd bullet point is totally new information to me and thank you so much! Following a major reaction are you supposed to stick to really low allergen foods like rice and chicken just to give their system a break or prevent additional flare ups?

normal development or a living child

This is pretty much how I feel about it moving forward, except because my daughters are so close in age (20 month age difference) I feel jaded as to if I'm preventing the older one from experiencing foods to keep the younger one safe. But obviously safety has to come first. That's why I'm kind of desperately looking for some kind of hack around this allergy stuff. I want to make my 2 year old pancakes and let her have cereal and not worry about what may drop on the floor that the other one could possibly encounter and, God forbid, possibly ingest and have a reaction from. I'm fine with a restricted diet for myself, but I'm her mom. I'd do anything for her, ditto for my husband. But I want to still allow my older daughter (and really both of them) to have treats every now and then. Like some kind of hypoallergenic sugar cookie or something. I'm too worried to even let her come near bread. I think all bread has either eggs, soy, or dairy in it. I have no idea what I'm going to do in regards to Halloween candy and trick or treating. Talk about a non allergy friendly holiday. Holy crap.

[rebekahc]

Cross contamination warnings are voluntary and not regulated in any way.  However, studies have shown that items labeled as may contain actually do contain about 25% of the time. You're playing Russian Roulette when eating those items unless you have a known high threshold or other mitigating factor like heated protein tolerance.  Do some reading in the manufacturers section here to get an idea of which companies have better or worse labeling practices. If I remember correctly, the 365 brand is one considered not trustworthy by many members.

The only ingredients required to be on the label are top 8 allergens (if they're intentionally included).  Other things, like celery, can be listed as natural flavoring, spices, etc.

Our experience has been that after a reaction, there's no real rhyme nor reason to what will trigger symptoms, so I don't know if further limiting the diet really makes much of a difference.

[momma2boys]

I always put cheese in my sauce.  I think for now, take it one day at a time.  She may be reacting to foods she is only mildly allergic to because of recent reactions. Yes she may develop more, but lots of kids outgrow allergies too.  Now it is easy because she has no clue.what she is missing out on and we can help you come up with safe treats once things are clearer.

Hang in there, we all understand how stressful and frightening this is.

[CMdeux]

Do you guys just stay away from processed foods entirely? How are there not entire lines of food product out there that are specifically geared towards food allergy kids? Or are there and I just don't know about them yet?


Yeah, because the bummer is-- there IS no hack when your allergen list includes soy, milk, and eggs.  That is, in my experience (and I've lived it) the evil trinity of food allergy, basically.  You could maybe substitute wheat in for one of the three and wind up in nearly as awful a place, but honestly-- any three of those four (wheat/milk/eggs/soy) is a living nightmare in many ways.

It means that about 99% of anything that comes in a can, bag, or box is automatically off-limits unless you KNOW that there's no cross-contamination in processing that food.  The only way to really know that is to call the manufacturer and hope that they are helpful.

Sorry about that. 

It will probably help you to know that it's LIKELY that one or more of your child's allergens is high-enough-threshold (that is, needs a larger triggering dose to cause reactions) meaning that you might be able to get away with foods that have a known but low level contamination risk (like a milk substitute run on shared lines with soy, for example).  That kind of thing DOES make it easier, but it's also often trial and error to figure it out over a long period of time.  I was very lucky that when my DD was your child's age, milk and soy were both like that for her.    UN-luckily, peanuts and treenuts were most emphatically NOT like that, and neither was egg, which meant that about 90% of the gluten free stuff that I could have used for her... I couldn't.  I was forced to take some calculated risks in order to feed her at all, because I had to find protein and grain (or grain-substitutes) that she could tolerate and which were high enough in vitamins and minerals to keep her out of a FTT diagnosis... which, um... she actually DID earn anyway briefly when she was two.

I don't recommend that people use bulk foods if they have food allergies, for example, but if you are dealing with multiple life-threatening food allergies, and you have at least two of the unholy four mentioned above, all bets are off-- you do what WORKS.



Potatoes, chicken, and carrots were a staple meal at our house during those years, btw.  That was my "I need to not be staring at my kid for the next five hours" meal.    It's low allergen risk, and EVERY aspect of it is lower risk still due to lack of processing and the ability to scrub/wash the ingredients thoroughly beforehand.  That and a little Morton's salt was about all that DD ate after a reaction of any magnitude-- at least until things settled down again in a week or two.

[Macabre]

Welcome and ((hugs)).

My 16 year old DS has been allergic to raw celery. He does fine with it cooked, though I honestly would not try that at this point. We always picnic at Easter, and once about dice years ago he reacted with hives around his mouth to a good that was cross contaminated with celery that DH and I packed for ourselves.

It does get better.

And your child is likely to outgrow at least a couple of these.

It does cause some problems at school. But there is something that can help. Tuck this info away in a folder for school: a 504 plan is a legal document that will give your child both safety AND inclusion. You'll want to talk to school before Kindy, but you can get one later.

[OptimisticMom]

Thank you so much for your replies. I don't know any other parents that have allergies similar to my daughters'. I either run into parents that are dealing with really severe peanut allergies on levels that I haven't encountered personally or parents that have kids with a mild dairy or mild egg allergy and they kind of minimize food allergies. Then there is everyone else and they don't understand why peanut butter shouldn't be allowed in schools, which is fair, 13 months ago I didn't get it either but now I do and I'm pretty sure my close friends get it now by knowing me and my daughter. Anyway, it's comforting to know that there are people here who have been doing this a long time and your kids are in schools and healthy and eating. Yay!

In regards to food tolerance levels and whether or not she may outgrow her allergies, is that at all related to the scores that she was given when she did the allergen blood testing? I think it's a RAST score? Her levels were relatively low on everything but her allergist gave me the impression that it's likely that the nut allergies are more or less here to stay regardless of score. I'm wondering if celery is the same way but that's developed since the last time we saw him. She scored highest on dairy, which sucks, but scored nothing on soy and I swear she is allergic to soy.

[Macabre]

You'll manage Halloween when that time comes.

Many families have a Great Pumpkin or a Halloween fairy. We let our child go truck or treating with a cheapo basket. He'd bring it home and trade it for something better: safe candy (you will find some) and a prize--less than "Santa Claus main gift level" but better than an every day toy.

I would throw the TOT candy in a bag and then in the trash in the garage. Many of the safe stuff he collected was rendered unsafe by being mixes with the other stuff. And repackaged can y is really dangerous.

Often times family members don't get it. That may be one is the most difficult things.