creating a safe home

[Tightropewalker]

Many of you may avoid having your childs allergens in your home, I understand that. My daughter is allergic to dairy, eggs, nuts, soy, ham, seeds and fish. We have other kids who have allergies to dairy so soy has been a staple for them. We generally have food with her allergens in the house. To be honest with her list I find it hard to feed everyone else if we all avoid her allergens. She is on some supplements to help with the lost vits and minerals, protein etc. 

My other kids seemed to have an awareness from an early age regarding what they were allergic to. They had anaphylactic reactions but also some minor exposures that resulted in vomiting, the latter seemed to make exposures a scary thing hence they were cautious and asked before eating. My youngest has had 3 anaphylatic reactions. She will eat anything handed to her. When we are out we actually have stickers on her with her allergens and she is glued to one of us. 

My youngest has no idea what she is allergic to. She can recite the list but she doesn't get it.

If she finds some food she will eat it. So we don't leave food around. She understands that she shouldn't do this, she runs to a room and locks the door while inside with the food. This is very disturbing. I have resorted to scaring her with tales of doctors and needles, clearly this isn't ideal (worse than that it is likely to backfire and it doesn't even work).

So far we have been lucky, we are careful and she hasn't managed to grab something that she is allergic to. I hope we are always this lucky. We have rearranged the house so her food is accessible to her and her sibs food is not (for now- she is creative).

Any ideas or advice? How have you dealth with this?

[booandbrimom]

Welcome!

You don't say how old your daughter is, but the scare tactics generally don't work well until 9 or 10. They just don't have enough cognitive development until that point to understand dire consequences.

I think the trick is to have foods that your daughter considers her own. We have a special cupboard for my son (even still, and he's 17!) that contains things he can grab without thinking about it. Over the years, I worked hard to find special things that he thought were cool - Divvies, Amanda's Own, Indie Chocolates, Clearbrook Farms, etc. He could take whatever he wanted. (He always was underweight, so the whole watching calories thing was silly.) Even though his sister had things he couldn't have, he didn't feel deprived.

The other thing we did was to keep the house mostly allergen-free. We didn't allow peanut butter - too sticky. My daughter (no allergies) grew up on Sunbutter. All the milk-containing things were on a special shelf in the fridge and almost all our joint dinners were cooked without. (My son is not allergic to egg, which made things easier, but his other allergies are similar to your daughter's.)

You know you have a risk-taker...so you're going to have to do whatever you can to make your life easier for yourself!

[GoingNuts]

Welcome Tightropewalker!  (Great moniker, BTW!)

A little more information please - how old are your children?  Genders of each?  Any learning difficulties?

I had similar concerns about my younger son until he was about 3 1/2 - 4 years old.  I wouldn't say that he would eat anything that was handed to him, but if it was something particularly tempting, like a woman handing him a sample of a cookie in the supermarket  , he'd go for it.

Until the day we were in the supermarket with his friend, who shared the same allergies and was the same age.  When he started to go for the offered cookie, she screamed at him "Don't do that.  Do you want to die?"  And that was the last time he went for something on impulse.  His peer not only mentioned the "d" word, but he listened to her waaaaayyyyy better than he would ever listen to us.

Give us some more background, and maybe we can come up with something better than having a 4 year old threaten her with death. 

[booandbrimom]

Give us some more background, and maybe we can come up with something better than having a 4 year old threaten her with death. 

BAH! (snort!)

[Mfamom]

Welcome!! 
I only have one child, and his allergies are pretty straightforward.  We don't have anything in our house he's allergic to. 
I'll be interested to hear more about your kids ages etc.  and hopefully we can help you.

[Tightropewalker]

Thank you.  I will use whatever threats will work, but they don't mean anything to her. Instilling a fear of doctors is counter-intuitive anyhow. It is my REaction but isn't a good plan.

I avoid the allergens that are common across kids- dairy, eggs and nuts. But my youngest has the most exhaustive list, we have her allergens in the house.

My kids are 8, 5 and 3. The 3-year-old is the risk taker. No apparent learning issues. She is reckless, it's her personality to try things.  Today alone she cut her hair in the bathroom, locked herself in my office with some mints (safe but she didn't know), tried to escape from a violin recitial through an air vent in the wall, climbed from a step stool to a chair onto a kitchen counter to get a lighbulb which she then tried to place into a lamp, she raided her grandmothers purse and found gum, her grand finale was finding condoms in my husbands bedside locker- she opened each and brought them downstairs for us all to see. Mercifully there was no latex issues for her and my mother-in-law seemed not to know what she was being offered or was gracious enough not to comment.  That's just what I can remember.

Even if the house is safe I need to teach her the world is not. I like the idea of the seperate cupboard for her food, thanks. I am eager to hear what other things have worked for families in the past.

[AllergyMum]

Welcome.

I have an only child so our house is fully allergy free.

The only thing I can offer would be to practice role playing with her.  Role play what to do in different social situations.  Make it a fun game & perhaps she will learn some food safety.

[YouKnowWho]

Welcome - we have multiple allergies and all allergens in the house.  Okay, maybe not eggplant because sadly I am the one who both loves it and is allergic to it.

So we have me - allergic to bananas and eggplants with multiple drug allergies.  I will say depending on the illness, I may not be quick to grab the ibuprofen for my kids because I don't really want to deal with cleaning up allergy laden barf, kwim?  Even DH has to be careful and upfront with his drug usage because I umm, have found out the hard way 

DS1 - has had to eliminate gluten, oats, rice, corn, eggs, soy, dairy, peanuts and tree nuts at various periods in his life thanks to a large variety of false positives. However with DS1, I couldn't have asked for a better child who handles food allergies with grace.  I joke that before he was verbal, he would crawl over to a Cheerio and asked with his eyes - "Is this okay for me?"  With each test (I had a kooky allergist who was convinced he was allergic to everything because he was so small - okay cut his diet in half and expect him to gain weight) and each removed food he handled it with much more maturity than I as a grown adult would have.

I giggled when you explained your younger child and thought wow, you have met DS2.  Ask my MIL about the day he decided to crawl through the bunk bed ladder and get stuck to the point she was steps away from calling 911 and my MIL doesn't call 911 for nothing.  Just before his 2nd birthday, our world imploded with him.  I had always joked that thank goodness DS1 had the food allergies with his cautious nature and not DS2 with his throw caution to the wind attitude.  And then he started reacting to foods that he had eaten all his life with no issues.  We sat there watching him swell, grabbing the plate of food away and listening to him cry because he wanted it back on so many occassions it was more sick than sad.  He was truly the child that ate first and asked questions later.  Unfortunately his list of foods he was allergic to was not only the exact opposite of DS1's but the ultimate kicker, were the ingredients in DS1's gluten and egg free food - beans, peanuts and possibly tree nuts.

So we did the labels on foods - lots of color coordination about what was safe for DS1, DS2, mom, family, etc.  I will say that DS2 did understand a bit from day one that food purchased for DS1 was DS1's and was not generally served to the family (specialty cereals, waffles, breads, etc) but the struggle was more with the sweets end of things - so we made some concessions to the Enjoy Life brand even with the added expense because it was safe for both.  At the same time though, we had to make rules about foods being confined to the kitchen, questions asked to an adult before eating.  Since DS2 was younger, I actually had the kitchen gated off so that I could cook safely (plus he was an escaper so limiting his ability to get to the back door was helpful.)  And yes, some of those treats that were safe for DS1 and not DS2 confined to upper shelves.  And with that same train of thought, for every treat DS1 had, a safe one purchased for DS2 because while DS2 didn't realize how limited DS1's allergies made his life, I think he wanted to feel like he had special food as well.

With school coming into the situation, we basically just had to drill into both of their heads that only mommy, daddy (and okay they even question that because Daddy calls me with questions often) and granny (my MIL lived with us for many years) have safe food for them. 

Telling DS2 that he would get a shot would have excited him - he's the kid that loves getting his blood drawn.  Telling him he would go to the hospital, woo hoo - DS1 gets to go all the time (croup, pneumonia, dehydration, DS1 goes and jokes that he hasn't been in this room in a few months, or he was there last year).  I could tell him he would get sick, but he basically only remembers ever getting colds until that point.  Add in that his worst reactions included larger doses of Benadryl which causes him to black out so he either blocks it out or just can't connect the dots.

It's a day by day process but at the same time, I couldn't remove the food which would further limit the diets of either child.

[twinturbo]

The cross street of multiple kids with opposing allergens? I live there. Fair warning my system is not perfect.

Older boy anaphylactic to peanut in microscopic amounts, thus far 'mildly' allergic to egg. Most likely will outgrow egg.

Younger boy allergic to 7/8 top 8 plus barley plus temperature changes plus cold urticaria (any iced item like a snow cone is out) plus possible reactions to some fruits/veg. Huge reactions extremely low thresholds.

Mine are fresh fruits, soy, coconut, rather high thresholds, I can be around them no problem.

The only banned substance in EVERY form from the house is peanut. The protein is too durable for too long and the reactions to it have been too severe.

All the rest I evaluate on a case by case basis taking in to account the following

• protein durability, ability to break down with cooking
• kids tolerance, reaction history
• form factor: sticky, aerosol from cooking method, powdered form that can be agitated, etc.
• nutritional impact, ability for safe, nutritionally equal or greater substitute, or just "treat"
• can the family follow a protocol to eat the allergen in a contained manner?

Cooking with eggs, milk, wheat, barley is out. Not only will it release proteins either through heat or mechanical agitation, my cooking utensils and dishwasher will become major sources of cross-contamination. We are an anomalous case in how sensitive our younger boy is but unfortunately it was a change necessary to cut down on reactions, eczema. It proved to be a problem rather than assuming it was.

Older boy still gets milk, milkshakes, cheese sticks, pizza, yogurt, etc., mainly away from home. Cheese sticks come individually wrapped and go straight in to his lunch box, same with milk... I only buy sealed 8 oz. single servings that he drinks with dad in the 'milky' car. We're also big on picnics on sunny days ordering a pizza for delivery to eat outside. After that it's a hazmat style clean up complete with clothing change, mouth washed by parent, chew xylitol gum, brush teeth, clorox wipes on any surface indoors that may have had contact.

Wheat we've found that our younger boy can actually pick up (hands only immediately washed) for very short periods of time without reacting -- sometimes. Even though his RAST for wheat is well over 100 and barley is a class 5 with history of anaphylaxis from ingestion, unlike milk he seems to really need to ingest it to provoke a reaction. So wheat items either without milk or high heat treated milk are allowed if they are pre made like sandwich bread or Divvies cookies.

We use a lot of soy sauce which is brewed soy and wheat, in dedicated pans for our own food. One reason is that GF "soy sauce" is tamari which is different from light soy sauce, the other is that it's mostly amino acids and very little proteins. For us in particular it is low risk.

Egg we hope to eventually get both boys on baked but that's down the road. For now I occasionally allow myself a store bought item with baked egg & milk in extremely low amounts. I eat standing up in a designated area in my kitchen, wash up after, wash up my area after.

In general I go through an insane amount of nitrile gloves, hand soap when I'm dealing with allergens. We're assessing our garbage can placement because guess where contaminated paper plates and cups go, yeah.

I don't want to rattle on much further since I've covered what we live with in what form, but in closing I would like to say that what we've done for the sake of easier shopping, cooking, quality of life, safety is a voluntary simplicity based on whole foods we can all consume so we can still have family dinners, save $$$ (hard to do with so many allergens), increase safety. Our typical dinners consist of either brown rice/quinoa or white rice, chicken or beef or pork shredded with onion/green onions, rice wine, salt, spinach or broccoli sautéed with garlic, or cabbage like items with ginger. We go through a ton of berries, bananas and oranges.

We keep eating to the table. No one wanders with food due to allergies and pest control.

As far as behavior my oldest is super cautious and THANKFULLY cool eating his own food even at birthday parties. Problem is you can't hold such young kids responsible for allergen management, and again THANKFULLY he doesn't care if he's eating Cravings Place mix cupcakes (free of all top 8), he's game. My oldest also has a slighter build, absent-minded professor mentality. He's appropriately fearful of his allergens and unknown food.

My youngest is barbaric warlord in the making. He's a take-no-prisoners tank set on conquest. During his milk challenge he anaphylaxed after the first round, took the epi from the allergist, napped on me in the office then got back up to finish playing like nothing happened. He's the type if threatened with his allergens by another kid would pause to give himself the adrenaline shot before handing out 5 minutes of payback beatdown. He's probably going to eat stuff on purpose just to see if he still reacts. Unlike my older child he wants to eat what everyone else is eating.

I'm hoping in about 5 years time when they are both able to understand better we could live with almost any allergen in any form, excluding peanuts but including some more tree nuts.

[Ra3chel]

I don't have kids, so, grain of salt, but I'm surprised no one else cued in on this:

No matter what direction you take with the rest, I'd start by removing or disabling the locks on your interior doors, ASAP. That your three-year-old locks herself into rooms to eat potentially allergenic food is terrifying.

[Tightropewalker]

So much to consider. Thanks for the advice. The fact that others can navigate similiar situations safely helps (it may be possible for us afterall).

I don't want to think about b-day parties or school. My other kids went to preschool.

We confine food to kitchen & dining room but we have relaxed this, for ex. the mints in my daughters desk.

I may see someone who can help me come up with dinners that are safe for us all. It would make dinner less fraught and perhaps more social than it is right now.

The locked doors- it is terrifying. Her bedroom door is taped over so it can't lock. We are slowly doing this on the upstairs rooms on an as needed basis but you are correct, this needs to be done to all of the doors.

With kids who are getting bigger I think you do things incrementally as you need to, it is helpful to hear advice from others who can see the big picture.

[Mfamom]

we used to keep the bathroom doors locked when ds was toddler. we kept the tool to unlock it (small flat screwdriver thingy) above the door on the trim.

[Linden]

Hi Tightropewalker,

So sorry you have to be dealing with all this.  I used to work in the prevention field, and I hung around experts in child development.  From what I understand, kids this age (and older, actually) don't have much ability to control their impulses.  This makes scare tactics hard to use.  Even if you could get her brain to understand the concept of danger, her brain might have trouble stopping her from her impulse to eat the allergens.     

I totally understand you can't keep every allergen out of the home.  I have a multi-food allergic child myself, so I know it just gets impossible. 

Just to share personal experience.  I have found it helpful to make a dinner that is safe for everyone.  Not always possible, but helpful in reducing the stress level at meal times.  It has taken a while but I have slowly built up a repertoire of recipies that everyone can enjoy.  The allergens are then eaten discretely, often when the allergic toddler is not paying attention or is asleep.

The other thing I do is try to make parallel foods for my toddler that *look* like what everyone else is eating.  It may or may not taste like what everyone else is eating, but at least my toddler feels included.  (He knows it's his own version, but he is okay with that.)  I think this has cut down somewhat on the appeal of everyone else's food. 

[twinturbo]

I don't have kids, so, grain of salt, but I'm surprised no one else cued in on this:

No matter what direction you take with the rest, I'd start by removing or disabling the locks on your interior doors, ASAP. That your three-year-old locks herself into rooms to eat potentially allergenic food is terrifying.

Saw it, responded, but in a different manner.