Dairy trials

A while ago I mentioned I got our allergist’s blessing to do some at home trials with P’s allergens.  For a variety of reasons I was optimistic that it would go well…First off, he was tested way back when he was 9 months old and so much time has passed.  But even more importantly, he had never actually consumed several of the foods he tested positive to so how do we know the blood tests were even accurate.  False positives and negatives are common and there’s also a large scale of immune responses so I didn’t really want to do more blood work because numbers are just numbers.  Instead, I thought I could give him oral challenges at home in a safe and cautious way.  For the record, his initial blood work revealed 2s and 3s (on a scale of 0-4) which is then based on what his symptoms were.  It’s not like a certain number corresponds to a specific reaction…it’s a very individual scale.  Since “his 3” was an anaphylactic reaction, it seems obvious that he is severely allergic to those foods.  But what about the 2s?  He had never tried any of the foods that he tested allergic to with a 2 rating (dairy, wheat/gluten, etc.) so what if that response was a mere rash?  Or what if he’d outgrown those allergies?  So many possibilities.

Another reason I chose to do this now, as opposed to waiting, was I thought it would be awesome if he DID tolerate new foods because then other people (family/friends) could help us out even more in the coming months when we have a newborn and I don’t have as much time to devote to cooking all of Patty-cakes’ food.

Our allergist suggested I start with things that he was most likely to be exposed to when out and about, or that would facilitate cooking for everyone.  And he also said the forbidden foods are usually better tolerated when baked/cooked into dishes with other safe ingredients.

For that reason I started with dairy.  Dairy is an easy source of fat and protein and would open up a ton of options for meals and snacks.  Butter is frequently hidden in dishes in restaurants and inadvertent exposure is common.  Plus, the protein content (to which his immune system reacts) in butter/cream/ghee is super low thereby giving him the safest possible trial.  I mean, it’s essentially all fat.  So he would be eating the lowest rated allergen in the lowest form.

I tried butter a few weeks ago and he showed no immediate reactions.  His skin flared up a week later, but it has random bouts all the time, so it’s hard to draw any correlations when it comes to his eczema.  I mean, he is exposed to shared toys every day of the week between library, gymnastics, “school”, swimming, music class, etc.  There’s bound to be allergens on them.  So skin reactions are a hard thing to rely on.

Next up was cream.

I made oatmeal the same way I always do (with water) and at the end added a little bit of cream to it.  Maybe one tablespoon.  I didn’t measure, but it was hardly anything because it was in a cup or so of oats.  Needless to say, it didn’t go well.

He broke out in hives on his hand and cheek nearly immediately after eating it, but he seemed fine otherwise (he wasn’t scratching the hives).  So I waited.  And watched.  Like a psycho.  (Over) analyzing every little thing.  And an hour later I thought things were all good.  The hives went away and he seemed fine.  But then he puked.  A lot.  And then an hour later again.  And this time it was all over me, which freaked him out the most.  Poor kid was so confused and scared and in shock…and me…well I was a nervous wreck.  Parents of allergy children will get it, but I don’t know how to explain it to others.  Watching your child after potential exposure takes years off your life.  The worry is insane.  While I was holding him and covered in vomit, his face started to turn blue and I immediately called Kyle to come home in case I needed to give him his epi-pen.  I needed another person there to bounce my ideas and worries off of, who could see him in person and give me a second opinion.  My calm and collected nursing self always talks my emotional mom self down, but sometimes my mom self wins.  Kyle came home and I showered (trust me it was necessary) while he held (a very freaked out) P.  And then we went to the hospital.

I won’t bother continuing the story because it was all fine and no further interventions were needed (plus I decided not to check into the ED after a certain amount of time had passed and he was proving to be his normal self again), but I will talk about how the event affected me because writing it out here is like a form of therapy.

The rest of the day I was like a hawk.  With sky high blood pressure and adrenaline constantly surging through me.  I left the door open to check his breathing at regular intervals throughout his nap (even though we have a video monitor).  I documented everything and the times at which they occurred.  And took photos of his rashes and their progression/decline.  And I asked him if he had any “owies” whenever he displayed any emotion that wasn’t happiness (omg, he’s a toddler for crying out loud!).  For the record, it definitely helps having a verbal child when allergy testing because he did tell me when his stomach hurt after eating the cream.  I asked him if he had an “owie” and he said yes and I told him to point where and he pointed to his belly.  🙁  But man oh man, it is SO freakin’ scary.  It’s so easy to second guess everything.

Now that several days have passed and I feel like my head is clear again…I can say with certainty, I have no interest in doing any more tests any time soon.  His skin is a hot mess right now and while I’m glad he didn’t have an anaphylactic reaction to the cream…it WAS JUST cream!?!  With, like, negligible amounts of dairy protein!!  The hives and massive vomiting…now that’s a very alarming reaction to the “safest” allergen trial.  Not what I was expecting at all.

Silver lining?  Now we know.

My next step is discussing a probiotic with our pediatrician and/or allergist because have you seen this study!!!

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Comments (8)

  1. Cara

    Oh wow, that sounds super scary. 🙁 *HUGE HUGS* to you all!

  2. Katie

    Thanks for a sharing… <3 Just reading this gave me goosebumps. Such a sweet boy!!!!!!

  3. Linda

    I hope you don’t mind me saying but wouldn’t it be easier to keep him on a plant based diet (see the book The China Study), maybe his body is telling you he does not want animal products? I brought my now 14 year old son up vegan and he has never been sick or had any problems. He has had muffins, cakes and biscuits in the past that have had animal products in them and never had a problem not that we have them at home.

  4. Elise (Post author)

    Hi Linda…I have a lot of thoughts about this but I’m not sure I feel up to voicing my parenting decisions for the internet to read and judge. Here’s a quick reply: He has several allergies – mostly to plant based foods (soy, peanuts, tree nuts, sesame, gluten, etc.) – many of which contain key protein sources for a vegetarian. He is not, however, allergic to eggs, fish or shellfish, and in fact loves them more than any other foods. At this point in his life, I’m trying to make sure he gets balanced and varied sources of macronutrients and micronutrients and it’s definitely more difficult on a plant based diet. I’m not saying we won’t get there eventually, but for right now, it’s most definitely not “easier” as you suggest. The foods he tolerates are extremely restrictive so I’m not inclined to even further limit them when he is so young…and while it is certainly awkward for me as an ex-vegan, I am lucky that he is a very good eater and enjoys those foods.

  5. Laura

    Poor P 🙁

  6. Ttrockwood

    Holy crap! That is SO scary!! And such an intense reaction to such a small amount too…. Yikes. Pattycakes is so lucky that you’re his mom, sounds like you somehow managed to not totally lose your shit during all this…

  7. Elise (Post author)

    your comment made me laugh because it perfectly summarizes it. exactly. i have no idea how, but yes, i somehow managed to not totally lose my shit during all of it. 🙂

  8. Shawnna

    oh my goodness, how scary!! I am so glad to hear that he’s ok. I know you’re s nurse *and* really on top of things. So, maybe I caught a typo. But it’s my understanding that anaphylaxis is a reaction involving more than one system. So, both skin rash and GI upset mean that he *did* have an anaphylactic reaction to the dairy. At any rate, I can see why you’re not moving forward with any other trials now.

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