Tag Archives: Food allergy

Dining with Charlie

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Last night I was having dinner with the kids. A meal I prepared myself, with nut free ingredients in our allergen free home. Charlie started to cough and cough and cough. Now it was the cough that sounded like something went down the wrong pipe and if that had been Molly coughing, I most likely would’ve told her to get something to drink but it was Charlie so instead I started to internally panic. I realized that most non-food allergy parents miss out on this psychosis, so I thought I would share my train of thought with you after I heard Charlie coughing for the next 5 minutes.

Why is he coughing?

Why is he still coughing

Oh God, did a factory cross contaminate?

Did I read the french fry label?

Did someone put their hand in the peanut bin and then touch the broccoli at the grocery store?

He is still coughing.

Wait, he has been coughing all day. Is he sick?

Does he need a drink?

Yes, get a drink.

Is his face red? Is it getting redder? Oh, right, he is coughing.

Has he developed a new allergy?

What did I put in the meatballs?

Is your lip swelling?

No.

Is that a hive?

Seriously, have his lips always been that puffy?

Phew, coughing stopped.

Breathe, breathe, breathe

Please don’t vomit. Please don’t vomit.

I should check for hives.

That was seriously 5 minutes. The rest of the evening was keeping one eye on him in case he started breaking out in hives or vomiting. The fun never ends here.

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When you don’t have food allergies

WHEN FOOD ALLERGIES EFFECT THE NON-ALLERGIC

When I started writing several months ago, I had little plans in mind. I knew I wanted to write about Molly and our struggles with her Sensory Processing Disorder because it takes up most of our energy every day. I wanted to include our journey with food allergies as well because they definitely play a roll in our family dynamic. Sometimes the food allergies are why I am going insane. I mean who wants to bake cupcakes every time you go to a birthday party?? What I didn’t expect is that people would read what I wrote and change their behaviors. Seriously, I am humbled. In the past 18 months our lives got turned upside down, but in the journey I have seen how our family has effected other people. I have witnessed a 4 year old hold off on taking peanut butter and jelly to his new school because he wanted to find out if any of his new friends were allergic. A 4 year old that put someone else first, that’s amazing to me. Moms have come to me and asked about taking snacks to public places and told me that they are now conscience of how their children eat on public spaces such as playgrounds. I’ve had educators reach out to me and ask about safe classroom snacks for special occasions or parties. I had no idea that Charlie and our family would raise that much awareness, I don’t think I could ever express how touched I am by people’s concern for Charlie and other children like him. I wanted to find an easy way to help those that don’t have food allergies and want be considerate of those that do. So I put together a list of what do when food allergies effect others.

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1. Ask the mom. If there is a child attending a party or in a class that has a food allergy, reach out to the parents. We are more than willing to help and answer any questions you may have. But don’t ask Stampy. He told a Charlie’s classroom parents that home baked goods are ok to serve. It will be years before I let him talk again to other parents. Other than Stampy, we can tell you what food could be avoided and food alternatives could be served.

2. Eat where you eat, not where you play. If you are at a public venue such as a playground, story time or a pool and you want to have a snack then sit and eat, clean up and return to play. Easiest way to avoid an accidental contamination.

3. Read labels. If a food contains an allergen it will be listed. This gets tough when allergens can come listed in many forms. A gluten allergy for example has to read for many types of grains and even “malt” so it does get complicated. Occasionally, food companies are nice and will list the allergen content separately. For cross contamination, I usually will pick up several packages from a similar manufacturer to see if it has a “may contain” allergen statement. If it does and your package doesn’t, you can be pretty certain that your food will not have cross contamination issues.

4. Save the packages for the parent. Honestly, I do not have all labels memorized. I barely have my name memorized most days. I read labels every time I go to the store to make sure ingredients or manufacturing methods haven’t changed so I wouldn’t even trust my memory if it worked.

5. Use clean surfaces, dishes and utensils when preparing food and keep prepared food separate. This may sound like a no-brainer, but not everyone wipes down their counter tops 24-7. I know I don’t. But I have a nut-free kitchen. If I had to cook for a milk or wheat allergic child, I would need to scrub my counter tops down first.

6. Be understanding. When a parent of a food allergy child still wants to provide their own food even when you’ve taken the allergy into consideration, don’t be offended. It’s not that we don’t trust you, but we don’t. There’s a lot at stake with one simple mistake and it’s a mistake even we can make.

As a parent we are always trying to protect our children and it’s nice to know that I have friends helping to protect mine.

We Are Supposed To Be Having Fun!

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This weekend was the Fall Festival in our town. We don’t have the standard summer carnival, instead we have a big event for 3 days that includes carnival rides, music, food, crafts and games. It’s a pretty big event for our little city and of course it seems like the perfect way to spend a Saturday morning if you have kids. Or I should say, if you don’t have our kids.

Three reasons why we should stay home:
1. Food Allergies. First and foremost pretty much all delicious carnival food is a no no. All those peanut oils and chocolates and deep fried foods are all a danger to Charlie and being in the air is enough to make me almost insane. Peanuts are one of those great food allergies that become environmental when cooked apparently so there’s the fear that random peanut proteins will jump from the fryer and into Charlie’s mouth, eyes or nose. Plus Charlie thinks ground food is equally if not more edible than normal served at the table food so I’m on extra alert.

2. Motion Sickness. Charlie gets car sick. He has now vomited twice in the car and complained of being sick and hot numerous times while driving. Needless to say, one ride and he was done. I’m honestly amazed he made it on one. It’s the first time he’s been on a carnival ride by himself. And probably the last time.

3. Molly.

I can’t tell you how many times we do things that are “family fun” oriented and end up leaving stressed, tired and with cranky kids. Molly tries her best but when push comes to shove, she can’t regulate that much stimulation so she ends up trying to soothe herself which means she ends up trying to hang from all my limbs or asking to be carried. Have you ever carried a 35 pound 4 year old for a prolonged period of time? I have. More than once. I have carried her through the zoo, I have carried her through the tractor show, I have carried her on walks around the block and I saw myself carrying her from our Fall Fest. It was coming: the whining, the hanging and the carrying. You could see it in her deteriorating behavior and we quickly opted to leave, unused ride tickets and all.

Then there it was…. the playground.

An entire carnival the kids want nothing to do it with but a playground?? Hells yeah! After 10 minutes and Charlie trying to play in a near by dumpster and throwing himself on the mulch face first in a fit, we quickly gathered the kids and headed for home.

I hope the kids remember these times fondly, as we have no real pictures of the kids not enjoying are family fun outings.

Need Vs. Want

I was in the minority growing up. I grew up knowing about food allergies. In the 80’s I was aware of them and even though they weren’t mine, I understood that they could be deadly. My brother was plagued with several. None of which were Epi-pen worthy, but they still needed to be addressed. His were pretty easy to navigate around: citrus, melons and tree nuts. My aunt’s allergy to oranges was Epi-pen worthy. Although we only saw her several times a year, we knew that oranges weren’t allowed. At restaurants we requested they weren’t on our plates and we never had them in our house when she came to visit. For our wedding I didn’t need to be reminded about her allergy, I knew to request that oranges be removed from the premises. This was an easy request because it meant my aunt could safely attend my wedding. But did I need to do it or did I want to do it? I guess you could say both. I wanted to do it because I wanted her to attend our wedding and I needed to do it in order for her to be there.

Skip ahead 5 years and we are plagued with another familial food allergy. Only this time it is my son. I watched his face go from 1 one hive to twice it’s size in less than 10 minutes and I pinned him down in the ER while they put an IV in him. I watched the staff buzz around him and even move his room to in front of the nurses station and the entire time I was in denial. I didn’t want to believe that we were facing a food allergy. Over the next 4 months I read, talked to other moms dealing with food allergies, and called manufacturers to discuss allergy policies and contamination concerns. Did I need to do this or did I want to? I guess both. I wanted to be proactive and I needed to keep my child safe.

At this point, we have lived through 2 allergic reactions and in both cases Charlie has ingested less than 1/8 tsp of peanut butter. In fact he probably ate the tiniest little smear of the stuff. His second reaction happened at one of my friend’s home that is very allergy aware. She calls to find out about food she could get to serve Charlie, she asks about allergy friendly eating in public places so her children don’t possibly harm other children and makes sure that she scrubs down her kids before playing with mine and Charlie had his second reaction in her house. It didn’t happen because someone was being malicious or uncaring, but because sometimes accidents happen when you venture into a peanut filled world. That being said, does she need or want to be this conscience about a diagnosis that does not directly impact her. I guess both. She wants to have her Godson in her life (technically both her Godsons have food allergies) so she understands the needs that go with that.

We’ve only gone peanut free for a little over a year now and in that time I’ve been told that I was being ridiculous, I’ve had people act like I was hurting their feelings because I brought food to their house for Charlie to eat, and people that have told me that I want to pack his food wherever we go. Maybe all of these things are true, but maybe it’s because I need to value Charlie’s health over their feelings. Imagine you go to eat at a restaurant and your server tells you that the food being served has a 10% chance of making you terribly ill and/or killing you. What do you do? Do you throw caution to the wind and eat it anyway? Or do you go home and eat food that is 100% safe? Now imagine you have to feed that food to your child, do you give it to him? Remember, one bite could kill him and you know this giving it to him. If I had to guess, you would probably return home and eat the safe food. You would probably also start packing a lot of your own food when you went to places and you may even sneak food into places that say they don’t allow outside food. Theoretically you don’t need to. So are you needing or wanting to bring your own food?

Here’s my answer: I need to bring food. I need to bring my own food because I love my son and I want to keep him around for awhile. I need to call ahead to your birthday party and ask about the menu and I need to read food labels. Believe me, I don’t want to do any of these things. My life would be 1,000 times easier and grocery shopping would be much faster if I didn’t have to do these things. I don’t want to call Betty Crocker from the baking aisle of the grocery store and talk about cookie mix ingredients and then ultimately decide to bake them from scratch. I don’t want to ask to speak to managers or chefs at restaurants and then trust them to not kill my son. I don’t want to worry when he goes to preschool and I don’t want to sit and discuss emergency action plans with his teachers. These are things I need to do. I need to do them because I don’t want to go to the ER today, I don’t want to jab my son in the thigh with his Epi-pen and I sure as hell don’t want him to die.

As a mom to a child with food allergies, I don’t expect you to really understand the difference between need vs. want. It’s really something you can’t empathize with unless you have been there and have made the choice, do I NEED to do this or do I WANT to do this? I do ask though that you don’t question my judgement of my needs vs. wants or take it personally if I don’t 100% trust you to meet my child’s allergic needs because his diet is not a choice that I wanted to make.