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.
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.
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. :grouphug: 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. :console:
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.
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
Quote from: OptimisticMom on September 07, 2014, 07:41:43 PM
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.
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?
So sorry you're going through this! Several of us have been there done that. :grouphug:
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.
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.
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?
Quotenormal 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.
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.
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.
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.
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.
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.
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.
Unfortunately, RAST (and skin testing) results do not correlate with either severity or with threshold dose.
That is, someone with a low RAST could be like my DD and need only microgram quantities of peanut to react with near-fatal anaphylaxis... or could have a RAST over 100 and not actually be clinically "allergic" at all.
History trumps test results-- period. :yes:
Also to keep in your back pocket-- RAST values tend to peak at about 4-6yo. It will be SUPER depressing if you retest in three years and don't see that one coming. Just know that RAST values can go up and down for reasons that have nothing to do with anything.
Welcome! You've already received lots of good advice here. Every family finds a different way that works best for them.
I also chose to have our home allergen free. My oldest has many allergies and asthma. My DH, myself, and other two children do not. I needed and wanted one place that was always safe, where I did not have to think, restrict my child, etc..... Those baby/toddler years are tough with not touching faces and not putting things in their mouth. Then there are the years of wiggly teeth, hands always in their mouths!
Now my baby girl is 15. She's come a long way, we both have. At this time we only have 2 of her allergens in our home, eggs and sunflower seed spread (our family peanut butter replacement). Sunflower seeds are a new allergen for her, just tested positive this past May. She's had no interest in the spread but the boys have learned to be very careful when they use that or if they are using eggs.
The boys do not mind or complain ever about not having her allergens in the home. It's the way they grew up. Their first peanut butter was at school and neither one of them thought it was any better than Sunbutter, which our schools also have. They eat melons and pineapple when they can when they are not home. Neither one of them seems to care about nuts or sesame.
It becomes a life style. At first very scary and restricting for good reasons and then a matter or routine. Over time as they grow up, less restricting. My DD is learning how to eat safely at a restaurant without me. She goes to the mall, the movies, and pizza places with her friends.
Oh and on the subject of Halloween, even to this day, DD's costume includes a pretty or scary pair of gloves! Our dentist office sends candy to the troops that the kids bring in. I give mine a small thing....these days DD gets a new pair of earrings.
Have you tried to make your own sauce? I do. My DD is allergic to garlic so I trust no jar sauce. I make a big pot and freeze containers.
One of the most important things I learned from this group early on is reactions trump testing (as CMdeux just said)! DD tests positive for apples but eats them often. She tests positive for shellfish, can not eat crab or lobster but can and does eat shrimp. Someone already said this earlier, keep a food and reaction journal. It helps a lot when they are small and can not tell you what they are feeling.
I don't trust Whole Foods labeling at all. Many mystery reactions solved. They cater more to those who have "allergies" and less for those with allergies, kwim?
Celery is a common ingredient in veggie based sauces. Dairy as well. So you are looking at shared lines. WF tends to have a too bad, so sad attitude if you have a reaction. It is frustrating as heck.
I do shop at Whole Foods but mainly to find other brands we trust - Enjoy Life, Tinkyada pasta, Lucy's Cookies, Ians (these are brands that work well for our allergy set, not necessarily yours).
We do have allergens in the house but I am dealing with a MIL who has a gluten and bean intolerance, DS1 who is allergic to wheat, rye, barley and egg, DS2 who tests positive to peanuts (no known reactions, he did outgrow a long list of allergens/intolerances) and me who is allergic to bananas, eggplant and a host of drug allergens. But we also have strict eating practices - assigned seats in the kitchen/dining room, food only at table, different colored glasses for the boys (and different colored plates when younger), DS1 has his own toaster (MIL tolerates cross contamination and her bread contains eggs), wheaty items are cooked but cannot be made from scratch (so I cannot make wheat biscuits from scratch but can make them frozen or from a can), I can cook gluten free from scratch, I buy Annie's cookies but only the GF options, etc.
We read labels every single time, even products like Enjoy Life which are free of the top-8 allergens, every single time.
I did try to make my own sauce on Saturday and it was really bland but it didn't cause a reaction in my DD at all. I need to find a good recipe, preferably one that I can let sit in the crockpot for a few hours.
I have picked up the Enjoy Life chocolate chips recently and they were great and I was shocked at them being dairy, egg, nut AND soy free. At this point, because my allergic DD is still so young, I'm really just trying to curb my non-allergic DD to allergy friendly foods because I do make her muffins and pancakes and we make cookies (I'm a stay at home mom, so we bake something together once a week during baby DD's nap time). I also have an Earth Balance vegan and soy free butter here that taste EXACTLY like real butter and it's heaven, but I'm not anywhere near brave enough to allow allergic DD to come near it.
After it was confirmed with the skin test that she was allergic to dairy, I committed our family to a strict Paleo diet. Which was great, but Paleo still has lots of nuts and eggs and soy. So that's out. I have tons of coconut flour, almond meal and coconut oil that I'm afraid to use. I found a site yesterday that said it caters to recipes for those with allergies but I swear each recipe has something in it that I can't use. Lately, I've been using http://minimalistbaker.com (http://minimalistbaker.com) for recipes, which is good because she uses Flax Eggs as her egg sub and I can do grape seed oil in lieu of butter or coconut oil but I'm so stumped when it comes to milk.
In regards to reactions being the Golden Rule instead of testing, then soy is her biggest trigger. Anytime I've consumed soy and then breastfed her she flares up big time. Hives all over her little neck, arms and tummy. I thought soy frapaccinos from Starbucks would be a good dairy substitute, wrong. I thought Cinnaholic would make allergy friendly cinnamon roll treats for our family, wrong - those things are chock full of soy. Marinara with soy was the worst experience ever however that could have pretty much been a trigger of something else or multiple things. But each time I'm stumped because she's tested negatively for soy both in the original skin test and recently in the blood test. And that has all been after I have consumed it and then breastfed her, with the exception of the marinara sauce, that was first hand contact.
I think moving forward, I just need to resign myself to the fact that I need to do a lot more cooking from scratch and freezing batches to keep things simple around here.
And I love that idea of a halloween costume with gloves! Genius!
Subs for milk are hard. I am only lactose intolerant.
I have not found a coffee creamer I like that does not make my coffee taste weird.
I have not found an ice cream I like that is creamy. (there are some coconut based ones that are suppose to be good but my kiddo is allergic to coconut.
In mashed potatoes, I use some of the starchy potato water with safe margarine. My kids actually do not like mashed potatoes with milk, they say they don't taste like potato.
In frosting I love to play with liqueurs and juices. I even once made blueberry frosting with blueberry syrup (for pancakes) and my kids loved it! If I don't want a flavor other than vanilla I use iced water.
Baked goods I use juices or water and I adore chocolate cake with cointreau or for really chocolate taste, a chocolate liqueur.
For Egg, I always had good luck with flax gel for things like meatloaf, meatballs, and heavier baking like pumpkin breads. For lighter baking I had some luck with applesauce. Both changed the flavor of lighter tasting pastry or cookies. For those I played....a lot......some very bad experiments. And then I discovered making cake with 7-up! Vanilla cake tasted so good again! Sometimes just adding extra baking powder to get more lift was enough. Sometimes corn starch helped hold baked goods together. There are some egg free baking cookbooks out there. I had mixed luck with them but that is where I started and then experimented from there.
As for pancakes.....I just left out the egg and upped the baking soda or powder depending on what the recipe called for. They are not as fluffy, but they are good. Heart healthy Bisquick makes up nicely without the eggs. I don't have a box right now but the website ingredient list is: Enriched Flour Bleached (wheat flour, niacin, iron, thiamin mononitrate, riboflavin, folic acid), Canola Oil, Leavening (baking soda, sodium aluminum phosphate, monocalcium phosphate), Dextrose, Sugar, Tricalcium Phosphate, Salt, DATEM, Corn Starch.
For me no two sauces are the same because I just put whatever I'm in the mood for in it. And I don't measure. There are a few things I always do. I always start by sauteing some kind of an onion (no garlic for us) and once in awhile I'll add peppers (not a favorite flavor of mine). I use shredded carrots, yep, dump the bag in or shred my own right into the pot - that's my sweetener. Salt and pepper or red pepper flakes. If I am using dry herbs I add them before a long simmer. If I am using my favorite - fresh basil, I add it for the last half hour only as the flavor seems better. I use to start from tomatoes....ummm, really did not have to start there - LOL. Now I mix some cans of crushed tomatoes, some diced tomatoes, and tomato paste (for me they have to be plain, no herbs, or spices, etc....so there is no garlic). Sometimes I add beef broth, sometimes I add red wine, those just change the flavor a bit. That's it. Mine sits on the stove for hours on low. I don't use the crock pot because it is too small for the amount I make.
Then when I want something different, from there it's my mood, mushrooms, sausage or other meat, olives, zucchini or other veggie.
One extra word of advice when making sauce in a crock pot (yes this really did happen in my single days). If you start your sauce in the morning and go to work and your friend calls with tickets to see Carlos Santana and you don't go home, by the time the concert is over and you get home.......sauce looks like baked beans! LOL! You mean my crock pot doesn't turn off by itself????
I use this site for baked goods, pancakes, etc
http://artofdessert.blogspot.com/ (http://artofdessert.blogspot.com/)
Not everything is dairy free but often times she gives subs that you can use instead. We've liked everything we've tried from this blog.
You got a lot of good info already. As people said, testing by itself can't diagnose a food allergy. A person can test positive and not be allergic and can test negative and be very allergic.
The examples you gave of her flaring after you having soy and nursing are concerning. Hives from exposure through nursing means she is pretty sensitive! However, I see most of the things you listed as examples are things with multiple ingredients so I think it would be hard to say for sure that soy is the cause. It would be a lot more telling if you ate edamame or tofu by itself and she reacted. When products have more than one ingredient it can be very tricky to find the cause of reactions. I was convinced my son was allergic to a particular food when he was little and it turned out it wasn't that food at all.
You said, '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.'
Testing when older doesn't mean it will be more accurate. Testing has a high false positive rate. If there are things you are avoiding based only on test results then you may be avoiding some things needlessly. A good allergist will work with you to figure out what you really must avoid and what might be a false positive.
As for 'she could develop more allergies' that is true of anyone. But most people develop all of them that they are going to deal with by the age your daughter is already so I wouldn't worry about that now. I'd worry about avoiding totally what you must avoid and figuring out if maybe you have some false positives.
A very good cookbook that is almost completely top 8 free is 'The Whole Foods Cookbook' by Cybele Pascal. She has two other cookbooks as well which are both great.
You asked about clean eating. I grew up eating natural, whole foods. It was frustrating to find that many organic and natural food products were not safe for my child but he could eat what I grew up thinking of as 'junky brands' such as Nabisco. Skittles are allergy-free for my son! They are totally cr*p but they are safe as can be from a food allergy point of view.
I tend to cook from scratch but if I have to choose between a safe brand that isn't so healthy and something with an allergen warning on it I'm going with the unhealthy food choice. This happens most often when we are traveling or out and about without a snack and run into being out of the house longer than planned. Usually I cook from scratch. I still don't like junk food but DS has to eat and if he is hungry a safe option is important.
You guys seriously rock!
QuoteI use to start from tomatoes....ummm, really did not have to start there - LOL. Now I mix some cans of crushed tomatoes, some diced tomatoes, and tomato paste (for me they have to be plain, no herbs, or spices, etc....so there is no garlic).
I think I have to start with tomatoes only, it seemed like all of the cans of crushed tomatoes in Whole Foods had cross contamination warnings for Dairy. Grrr…I may have to hunt down a good reliable brand. Thank you for the tips. I feel like printing them off and putting them in my kitchen! :)
Hezzier, thank you for the link! I'm going to check it out.
QuoteAs people said, testing by itself can't diagnose a food allergy. A person can test positive and not be allergic and can test negative and be very allergic.
We met with her allergist today and he said nearly this exact same thing. He said keep her away from soy, keep her on a very restricted diet and because her reaction to soy seems to be so severe that I can use her Epipens liberally. (Personally, I think he's a good doctor and we're in the near Stanford and that's where he went to med school. He also suggested that there is a child allergy study going on at Packard Children's Hospital that I could opt to include my daughter in but I don't know how comfortable I feel about that because she's so young. I just don't know, my knowledge of food allergies still feels severely limited.)
The items that I've had her blood tested for are ones that I suspect her to be allergic to based upon my consuming them, breastfeeding her and her having either a skin or GI reaction. When she had her first skin test (which feel like ages ago now!) I strongly suspected dairy, soy and peanuts. Nothing else. I have a 2 year old, we were eating lots of kid friendly foods, PB&J, Greek Yogurt, cheeses (cheese used to be one of my primary food groups) and my poor baby DD was having bowel movements constantly. I couldn't figure out what was going on. Her pedi just told me that some babies poop a lot. Ooooooookay. After 6 months I had figured out the correlation of my diet and her near immediate reactions and made an appointment with an allergist on my own and he did the skin test. I was floored that only Dairy was the ONLY positive because I KNEW that when I cheated and ate something that I suspected was not okay, like a soy frap, then she'd had a GI reaction. The hives and itchiness are a more recent symptom, or maybe I'm looking for them now, I don't know.
Breastfeeding her has been a blessing because I'm sort of doing allergy testing on her to a degree without having to directly expose her to anything. However, her allergist said today that I can give her Neocate Jr. so I can finally (FINALLY!) stop breastfeeding her. I want her to receive the nutrition that she needs and I just don't know how I can accomplish that when I can't give her formula or put her on milk. Apparently Neocate is the answer to that so I ordered some today and Amazon is delivering it tomorrow. Today he also said that we'll do more testing on her in a year, not anytime soon. In the meantime, I need to stick to fruits, veggies, chicken, beef, rice, pasta and black beans. I asked if I could try to give her some coconut stuff and he said I could VERY cautiously try to. I'm too afraid to do it though. I just need to adapt to what her body can accept and stop trying to add for the time being. He was pretty firm with making sure that I understood that if her body is saying she can't handle it, then she can't handle it. Soy is out. Dairy is out. Eggs are out (I tried to give her eggs 2 - 3 months ago, because that's what you do with babies and we ended up in Urgent Care because she started raspy breathing/coughing after I gave her eggs, plain eggs.) Nuts are only out because of the blood test but you don't really give a baby nuts anyway, so that one is kind of a wash anyway.
I'm really conscious about what I feed my older daughter especially, we do almost exclusively organic everything, I try to not buy anything in cans because of BPA, I'm super picky about meats, eggs and milk (when eggs and milk were still staples in our house) and try to do as local and fresh as possible (thankfully being in California makes that easier). But taking out dairy, eggs and nuts really limits what I can do. I was staying away from soy in general because of the hormonal aspect of it but it's the number one substitute for dairy but it doesn't even matter anyway because soy is out. I'm just going to learn how to do clean eating done right. I'll check out that cookbook you mentioned, thank you for the suggestion!
Btw, what is the general rule that you guys follow regarding epipens? I'm pretty liberal with Children's Benadryl, if hives appear at all I give her a dose of Benadryl, if she's itchy I let her itch unless she's REALLY itchy, then I do Benadryl. I've only done the Epipen that one time and it was really terrifying for the both of us. I don't want to ever give her another Epipen shot. That stuff is not for the faint hearted. My husband would have had a panic attack if it would have been him instead of me.
P.S. Sorry for the novel and thank you for reading it and all of your wonderful advice and wisdom!
For us our general rule of thumb is one symptom, Benedryl, two or more symptoms Epi.
If asthma flares and there is know ingestion, Epi.
If after Benedryl, the single symptom does not improve, I'm on the phone with urgent care getting advice on the next step.
Again, experience will guide you on this over time. It is so hard with babies. They can not tell you anything. It was huge when my DD could start to tell me what she was feeling. So, if in doubt if something else is going on, always Epi. Over time I got to read my DD's expressions and her behavior and I knew what was going on. My DD's anaphylaxis is different depending on what allergen she ingested. Certain allergens for her cause immediate stomach pain. Others start with itchiness.
Follow your allergists suggestions and trust your instincts. Mother's instincts are typically right!
I know you may not want to use the epi but the epi is very safe. Anaphylaxis (a systemic reaction) that is left untreated is potentially deadly so I hope you are able to give the epi if your child needs it. It is a big pain in the butt to have to go to the ER by ambulance (which is how you should go--not to urgent care becuase they don't have the safe life saving equip ERs do). You should call 911 if you epi.
Here is a link to a sample emergency action plan.
Plans vary a bit but this is an average plan.
http://www.foodallergy.org/document.doc?id=234 (http://www.foodallergy.org/document.doc?id=234)
Your allergist should have provided you with a written plan and the fact that he did not is a big red flag.