Tag Archives: Peanut Allergy

Fair

Fair.

It seemed to be the theme for the day.

It started with a patient I was working with that has been battling Parkinson’s. After he informed me that he was going to be disabled for the rest of his life, I just responded with “I know, it’s not fair”. He shrugged and said “it’s life”. Seeing where the conversation could go, I said “well, the phrase isn’t ‘life is fair'”. We left it at that and continued on with therapy.

Skip ahead a few hours and I for some reason thought my whole family would enjoy a Friday night at the town carnival. Now, to be clear, by the whole family I mean “the kids”. I’ve been here way too many times to enjoy the scene as an adult, but to be fair, for a kid it’s pretty fun. 

It’s fun, but it’s loud, it’s crowded, and there are a lot of lights and things to look at. Hell, I get overstimulated. But for a 7 year old autistic child heading home 30 minutes after bedtime, it was way overstimulating. This was as lose lose situation for us. I knew the carnival would bring tears but I also knew that not going would bring tears. What brought the tears on started was the fact that her brother choose to get a fancy you gun that made lots of noise and lit up while she chose to get cotton candy, which he was unable to eat. Charlie would not shared his fun new gun and I told Molly she couldn’t play with it until she wanted her hands. We were 3 minutes from our house. In that 3 minutes we got to how it wasn’t fair that her brother’s peanut allergy was ruining her life because she couldn’t play with his fun because she ate cotton candy. (If your confused, welcome. Pour some wine and join my team). Then came the doozy…. It’s not fair that her friends get to have fun and we never do anything fun. Remember, on our way home from the carnival, ate cotton candy.

Needless to say, the night went downhill quickly. When things calmed and I held my Chardonnay, paying bills at 9:00 PM, all I could think was “shit, none of this is fair”.  It’s not fair that she can’t have a good time, having a good time. It’s not fair that he has to miss out on delicious food and events. It’s not fair that he gets blamed for ruining things because he could die and wants to be included. It’s not fair that we are raising 2 difficult children. It’s not fair that he will go under anesthesia for the third time in 5 years. It’s not fair that no matter what we do, big compromises have to be made to keep peace or someone alive. It’s not fair that I feel like several 10 minute crying fits a day is “getting better”. Life isn’t fair. 

Advertisements

Food For Thought

I’ve been doing some thinking…

Often, when non-allergic parents complain about dietary restrictions in the classroom they blame the parents. Sometimes, the child but, it’s often the parents. It’s my fault your kid can’t take peanut butter and jelly to school. I’ve heard it, I’ve heard people complain about how hard it is to send a lunch to school that doesn’t involve nuts. Believe, I know it’s difficult. It’s not impossible.

Charlie’s class is nut free. But not because I asked or demanded that it be. In fact, I didn’t even mention it. The school had a policy in effect for food allergies that stated that I would send in his food for snack time. When he started in the two year old program, I showed up to orientation with a shopping bag full of snacks, with his name on it, for the school to serve him. I was ready to comply with the set of standards. Only I was met with his teacher informing me instead of that, they would like me to provide a list of food that is safe for him to eat and they would buy class snacks based on that. They would make the class nut free and for the other kids “special days” (when the parent of the child brings in the snack) I would be responsible for coordinating with the parent and either alerting the school if they could eat it or send him something comparable. Easy.

Again, I didn’t ask for it. As it turns out, the school is staffed with teachers. They aren’t doctors, nurses or really anyone that feels comfortable giving a child an injection. They are teachers. They teach. They manage a classroom of 2, 3 and 4 year olds. They don’t want to have to inject my son with epinephrine anymore than I do. They make his class safe because it benefits him, me AND them. It’s a win-win-win.

Now, I ask you, don’t imagine that it is your child that could die or that would need to be injected as they struggle to breath, but imagine it’s you. It’s you that is holding a scared, flushed, vomiting, suffocating child that is covered in hives and YOU have to save their life by jabbing a needle into their thigh, how would you feel about allowing the peanut butter and jelly in your classroom? Something tells me you wouldn’t sign up for that situation. Schools don’t either; or teachers, or scout leaders, or camp directors, or whomever. It’s a scary as shit situation. I know, I’ve done it. I remember it like it was yesterday. I was lucky enough to have a friend react as quickly as I did and hold my burning hot, vomiting child while I jabbed his thigh. I couldn’t imagine doing it by myself in a classroom of 16 other kids. I doubt YOU would want to do it.

So instead of cursing at an innocent child or a parent that wants to protect them, try to sympathize with what the caretaker of that child would have to go through in the extreme accident if the allergen is consumed. Then, maybe we could all be a little more understanding because it affects us, not them.

Learning to trust my child around food

“I’m just looking!”

That was yelled at me in a disgusted tone after I tracked down Charlie and reminded him he couldn’t eat a piece of the animal cake served at the party.

I felt awful. I had went around and around with him that he would eat only the cake I brought and he seemed to understand but I still hovered and didn’t trust him to do the right thing. As my good friend pointed out “He’s 4. He can’t be trusted”. It’s true. It didn’t help the guilt that I felt.

Here’s the thing. As a food allergy parent, I HAVE TO TRUST MY CHILD. I need to know that he will make good choices or I will probably go insane. Quickly. I need to know that he is listening and he understands the severity of his condition.

I’ll repeat that….. my four year old needs to be responsible for his life.

Although I have a wonderful community that keeps an eye out for him and does everything in their power to keep him safe, Charlie still needs to be the person that knows what he can and can’t put in his mouth. Or up his nose for that matter. He needs to know to ask about ingredients and he needs to know what ingredients he can’t have.

In some ways we are lucky. Charlie had his first allergic reaction at the ripe old age of 13 months. He doesn’t know what life is without an allergy. The rules and habits we’ve established are all he’s ever known. He doesn’t long for his favorite candy bar or ice cream he can no longer eat. He won’t know what it is like to go somewhere without his epipen. He will always be the kid with the “special snack”. That’s just his life.

At the age of four, he knows he can’t eat peanuts. He knows how to administer an epipen. HE KNOWS HOW TO SAVE HIS LIFE. The amount of responsibility and trust that we put onto that little person is astounding. A four year old needs to have the self control of an adult, and more depending on the adult. (I’m looking at you, Stampy).

I think that is one thing that is majorly overlooked when we talk about these “food allergy kids” and “food allergy parents”. We miss the amount of trust and responsibility that these kids have at such a young age. And the amount of trust that parents put into their kids at such a young age.

It’s not because we want to or even have to. No one is making us trust our children or dole out this responsibility to them, it just comes with the territory. It comes with the epipen. It comes with the allergy.

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.

Image

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!

Image

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.

Food Allergy Thoughts

I’ve now scrapped about 4 beginnings to a blog about food allergies. I just can’t quite put my thoughts into words. I hate them. They make me feel sick. They add stress to joyous occasion and there’s a part of me that has actually considered home-schooling. Now, the home schooling part comes from the crazy irrational side of me, but also the side that fears for her son’s life. Food allergies stole one of my favorite foods from me. Don’t get me wrong, I would pick the Wild Card over a peanut butter cup any day of the week, but there are days where I really really want that peanut butter cup. I know I could eat one, but it doesn’t taste as good anymore. And I haven’t figured out to make stress a calorie burning exercise so for the most part I stay away.

Yesterday I donned one of my favorite new t-shirts and noticed a weird reddish-brownish stain on the front. At first I was bummed because I can’t seem to own anything nice (yes, I used the words t-shirt and nice together) and then I felt sick and started to cry. After a second of “what is that??”, I realized it was dried blood. I remembered it was the shirt that I was wearing the day I gave my first epi-pen.  It’s no longer a fun new t-shirt I got for running a 5K while being pelted with powered paint, it’s a shirt that is stained with my son’s blood and has been vomited on. That’s the thing with allergies, they never leave. They are a stain on our lives. I will never go somewhere and not worry that it will end in another thigh stabbing and I will worry everyday he leaves the house that someone won’t fully understand the nature of his allergy and accidentally poison him. We went hiking and Charlie found an acorn, I spent the next hour worrying if acorns were a “tree nut” in the allergy sense and if we were going to have to book it to the ER. The good news, Charlie is not allergic to acorns, but it doesn’t change the fact that something as simple as a hike is stressful since a fury woodland creature has dropped part of it’s hibernation stash on our path. Our neighbors fed the squirrels shelled peanuts and our backyard became a stressful scavenger hunt every time we went out to play. There are still some days I find myself checking around the yard, just in case.

So, instead of dwelling on things I can’t change such as the child that will bring peanut butter and jelly to the lunch table or the playground mom that feeds her child peanut butter crackers, I’ve decided to focus on the things I can grow from. I can only become more knowledgeable on food allergies and how to educate others. I can have confidence in my reactions to his reactions and I can teach my child the joy in made-from-scratch brownies. Then hopefully, Charlie will learn from my confidence in his allergy and gain his own confidence. Yup, the best I can do is teach and lead by example and hope that he gains the necessary respect for the peanut so he doesn’t live with the same fear I do.

20 Questions To Dine With Food Allergies

It’s rare that you get to talk to an owner manager or chef of a restaurant while not in their restaurant or while they are working. I’m trying to ask all kinds of questions to find out if the Wild Card can safely eat while they are tending to me and other customers. Sometimes I feel like I get memorized answers. I think several restaurants go through the same “food allergy training” seminar. Yesterday I got the undivided attention of an owner chef of a local eatery outside of work and I jumped on the chance to question him inside and out of his allergy practices. The good thing is that he is a small deli and he is the main person preparing food so I know he is on top of what is what. It’s also from a place which I love to eat. I sent my labor coach/friend there after I delivered the Wild Card to get me a cold cut sub for lunch, no doubt the best in town. I needed this place to meet my standards and it did! For those of you that have never asked about food allergies, here is a list of some of the questions ER have to think about to ask.

1. Do you have any peanut or tree nut ingredients in your food?
2. Where are these ingredients stored in comparison to your non-nut ingredients?
3. Do you clean your meat slicer after each user?
4. How?
5. Do you fry anything?
6. Do you have desserts?
7. Are all desserts made on premise?
8. Where do you get your chocolate from?
9. Do you know for certain their plant does not handle nut products?
10. Do you mix your homemade cookies with outside cookies for packaging?
11. Do you wah your hands in between handling different types of food?
12. What you’re of oil do you use?
13. Do you bake your own bread?
14. Where does your bread come from?
15. What else does the bakery make?
16. Are you sure they only make bread?
17. Can I have their info to talk to them about food handling and allergen information?
18. Are you tired of my questions?
19. When are you having pit beef again?
20. Are you going to hide the next time you see me?

See the problem is that most people only know the handling and preparations of their restaurants, not their food suppliers and since you don’t have to label for contamination, many people don’t realize if products have been tainted. I’m glad that owner Bill took my concerns seriously and answered my questions thoroughly. It’s nice to know we can get a good meal that wasn’t home made and support local businesses at the same time. This place got an A+ in my book.

Disclaimer: this is not an entire list of questions that need to be asked, it’s dependent on the type of food and “yes” answers.