Im not crazy!!...Im Educated

I don't know about you...but sometimes people think I'm a little on the crazy end of the spectrum when it comes to my daughters peanut allergy. When I decided to start Talk For Me Tees, a line of food allergy alert t-shirts, I had no idea how immersed I would need to become in this crazy world of food allergies. In order to reach other allergy families I became a member of every group, community, and foundation I could think of. I have since found some of my greatest support, and some really wonderful friends as a result. Also, I find myself reading ALOT. And because of this reading I find I tend to err on the side of caution much more often than I would otherwise. This overly cautious behavior has even gotten "you must be crazy" looks from other allergy moms. I then find myself wondering..."have I taken this to far" or "maybe I should relax a little". But one day as I mulled over this burning question in my mind it hit me. I'M NOT CRAZY!! :) I'm educated. So I am here to defend my craziness, and explain why I make some of those back and forth crazy decisions.

1- I do not carry Benadryl: My daughter is anaphylactic to peanuts, and as far as my little ladies allergy goes I choose to pass on the Benadryl as the first line of defense. I was casually reading a post on facebook one day when a comment from Georgina Cornago mother of Giovanni Cipriano came up. Giovanni tragically passed away at 14 years old from a food allergic reaction. Georgina has become an active and valuable advocate for our community, and is working tirelessly to educate others so we don't have to suffer the way her family has. I couldn't find the post. But the question was about when it would be appropriate to use Benadryl. Her heartbreaking response pleaded with others to use the Epi first and always when an allergic reaction is occurring.

From the Mayo Clinic Website:
If you're with someone having signs and symptoms of anaphylaxis, don't wait to see whether symptoms get better. Seek emergency treatment right away. In severe cases, untreated anaphylaxis can lead to death within half an hour. An antihistamine pill, such as diphenhydramine (Benadryl), isn't sufficient to treat anaphylaxis. These medications can help relieve allergy symptoms, but work too slowly in a severe reaction. http://mayocl.in/1a7iGXX

I counseled with my allergist at our last appointment, and he confirmed Benadryl was not something he recommended I have in my allergy bag. That if I suspected an allergic reaction, I should follow the action plan, and administer epi if two systems, or one life-threatening system were effected. And that Benadryl could actually mask the symptoms of anaphylaxis. So, I decided to remove this extra question, and step from my emergency plan.

2- I pretend I also have a peanut allergy: I realize this sounds at best kooky. But I don't pretend in a creepy carry an epi, and tell people I have an allergy kind of way. I simply choose to eat as if I had a peanut allergy myself. This way I know I'm always safe to give goodnight snuggles and kisses, I can share a bite with little miss, She knows I am supporting her every step of the way, and I could if needed offer CPR without questioning what I ate last. Did you know food proteins stay in your saliva  up to 4.5 hours after consumption? I've even read it is recommended you wait 8 hours to be safe. Here's what WebMD has to say about it: http://www.webmd.com/allergies/news/20060306/kissing-peanut-allergy-dangerous Even if you brush and floss, you still have the protein in your system.

3- We do not eat food processed in the same plant as peanuts: This is a tricky one...I know even some allergists give the green light on eating from the same plant. Not mine. He tends to lean on the cautious side of everything (which I am so grateful for). I have never been comfortable with sharing a plant, but my ultimate deciding factor was when I was talking to a friend that works in a food processing factory...She confirmed they do have incredibly strict cleaning guidelines and processes they are required to follow. But amongst all the regulations there will always be one unique factor. The human factor. How do I know the person assigned to clean the equipment that day wasn't distracted, or in a hurry to get to lunch. Maybe it's the new guy, and it's his first time going solo, and he misses a step or two on accident. When it comes to anaphylaxis, I choose to not take the risk. We would rather skip the treat, or find one we know and trust to be safe.

4- Generic brands are a no for us: The tricky thing about generic brands is that they are processed all over the place, generally for several different companies and brands, and often with a large variety of other products. Sometimes they are labeled (usually as not safe), but most of the time they are not. To me it seems the risk of cross contamination is higher in these products, and the $1 or $2 savings are not worth it.

I am not an expert. I am just a label reading, info finding, baby loving momma. I am still learning everyday, and know there is allot I don't know. I would love to hear from you guys! What are some of the tough decisions you have had to make, and how did you finally decide what was best? Has anyone ever given you that...look?

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Auvi-q vs. EpiPen From a Food Allergy Moms Perspective

 

Ever wonder what the differences between Auvi-Q and EpiPenjr. are? Well I'm here to give you the short version...because lets face it nobody has all day to sit around and read about auto-injectors. I've also included a link to each companies website. They both have great instructional videos, that can clear up some of the confusion.

EpiPenjr.
- Tried and true, this injector has been on the market for a very long time, and has had plenty of time to prove themselves.
- Come in sets of two, with a handy clip to keep them together. Also includes a trainer for practice.
- Larger and not as convenient to carry, but there are tons of carrier cases you can buy that make them a bit easier to keep with you.
- Solution window allows you to check for discoloration of medication.
- Administration includes a swinging motion into your thigh (kind of like stabbing yourself, or your child, in the leg)
- Requires 10 second injection. ( No big deal unless your injecting a squirming and terrified toddler)
- After injection an orange safety guard drops down to cover the exposed needle. However, the needle does not retract, and I've heard it can break off in you leg. :(

https://www.epipen.com/en/about-epipen/how-to-use-epipen

Auvi-Q
- New kid on the block, still working to spread education, and prove themselves.
- Come in sets of two, with a trainer. But no handy clip...so they often roll around separately in the bottom of my purse.
- Small in size, making them the perfect size to stick in your pocket.
- Solution window allows you to check for discoloration of medication.
- Administration includes simply placing the item on your outer thigh, and pressing firmly until you hear a click. (Quite a bit less intimidating to me)
- Requires a 5 second injection.
- Needle retracts automatically so it's not likely to break off.
- Auvi-Q also has an automated voice that walks you through each step of the injection. (great for caretakers, or panicky moms)

https://www.auvi-q.com/auvi-q-demo


I am not a physician, allergist, pharmacist, or expert...I am just a food allergy Mom. I am simply putting things as a see them, and of course you should always counsel with a doctor to know what's best for you and your little one.

Are you an Epi or Auvi family? and Why?

You know your a Food Allergy Mom when...

Recently I participated in a group conversation held in a community of food allergy moms. The post was a simple fill in the blank question "You know your a food allergy mom when..." In the end there was almost 300 comments, and it was a fascinating peek into the lives of these food allergy families. Some of the comments made me laugh out loud, some made me want to cry, but all of them showed how much these kids are loved. I picked a sampling of some of my favorites, and included a layman's translation for those that may not be as familiar with the food allergy world...what would you add to the list?

- You do more research now than you ever did in highschool and college combined!
(Because you literally need to know what ingredients are in every single bite of food your child eats. And you also need to know if it was prepped anywhere near their allergen in case of cross contamination...think cooking with raw chicken, same concept.)

-You read the label on a box of Ziploc sandwich bags.
(Those sneaky allergens are hiding EVERYWHERE!)

-You would rather step in goose poop than step on the pistachio shells in the grass at the park...
(While poop is very gross, pistachio shells could trigger a life threatening reaction for some kids.)

-The school nurse calls to tell you your child fell off her chair and hit her head on the floor, and you're relieved.

-You know multiple ways to explain cross contact contamination in case they don't seem to get it the first time. (Again, cooking with raw chicken...)

-You volunteer for lunch duty for 6 years, every day, until you see that the school truly understands and gets it.

-When you have prayed each and every night for your child to outgrow or be cured of his allergy. Every night.

-You're reading a news headline (just this week) that states a man working at a local bakery was secretly putting 'nuts & bolts' inside of the baked goods and your first thought was 'phew....i thought they were talking about peanuts'  True story! (I thought the same thing, and was also relived! HAHA!)

-You dread every food laden event...
(We not only dread them, but often just don't go)

-You never leave the house without epis, baby wipes, cell phone, safe food/treats.
( The purpose of baby wipes is to wipe down surfaces your child might touch that could have residue...think picnic tables for example.)

-You go without a treat because you cannot eat it in front of your child and make them feel left out.

-When you have to console your child after they weren't invited to an event because of their allergies.
(Already had to face this, and little miss is only 3. Broke my heart.)

-You attempt to make your homemade birthday cakes look like the bakery's!

-Your kitchen now has a bread maker, a waffle maker, a ice cream maker, a crock pot, etc.
(This way you do know EVERTHING that is in their food, and you can get super creative substituting ingredients to make safe forms of classic food for your little one.)

-You dread having to be "that mom" but you know you have no choice.
( You know...that crazy ingredient demanding, snack verifying, epi-pen wielding mom...)

-You cry regularly because your very young child has to deal with so much anxiety and fear of food instead of just getting to be a kid.

-You wrap the Auvi-Q's in a pair of socks and sleep with them down your pants, so they didn't get to cold while camping. (Auvi-Q is another form of Epi-Pen AKA: lifesaving drug in case of exposure to allergen. They must be kept at room temperature. This my friends is much trickier than you would think.)

-You memorize the labeling practices of companies.
(My heartfelt thanks goes out to all those companies that voluntarily label for cross contamination...and for those of you that don't, Duncan Hines, you can kiss my big toe)

-It's January and you're already planning for summer camp by making LOTS of calls.
(Nothing more terrifying than sending your child off for an extended period of time, and letting someone else feed them...nothing.)

-You get a pit in your stomach when you see the school calling.
(This could mean any number of things...someone's having a birthday, your child is getting bullied, or worst of all your child is having a reaction.)

-You find yourself unexpectedly overcome with emotion when you finally take your child into a bakery or ice cream shop that can accomodate them. Something so many parents take for granted, I'm sure.

-You figure out where the closest hospital is and have their address/directions on hand - on all your trips. (No matter where you are in the world, you still have to eat. And when traveling your regular safe spots are removed from the equation...things get very tricky.)

-You are relieved when its just a bug you found in their mouth.

I hope this has given everyone a little insight into what it means to live with a life threatening food allergy in the family. For those of you that are managing an allergy, may you feel a little less alone. There are so many of us facing the same challenges, lets stick together. And for those of you that are not, be patient with us
. As you can see it gets a little tricky.

Food Allergy Tips For the Newly Diagnosed

I was busily prepping dinner the other day when I got a text from my good friend. "Thanks for referring us to Dr.Jones, we just got done meeting with him, and it looks like May does have a peanut allergy." I offered her some positive encouragement, and told her we would get together soon so I could unload all my peanut allergy knowledge on her. That night I started making a mental list of things I would share with her, and decided to send her a quick tip email. Some of the tips are so second nature to me now I hardly remember a time I lived without them. But, for those that are newly diagnosed this is an unknown, and totally scary and intimidating time. So, what did I tell her? I'll tell you...

1- Things are labeled so much better than they used to be. In 2006 they passed a law that requires food manufacturers to list the top 8 allergens clearly on their packaging, if the allergen is one of the actual ingredients. They do not however have to list if the product was processed on the same equipment, or in the same factory as the allergen. Many companies choose to be wonderful and list if there is a possibility of cross contamination or not, but many don't ...There is a website I reference ALL THE TIME called Trust The Label www.trustthelabel.com You can check different brands on this site to find out if they label for cross contamination or not.

 

2-When eating out...Check the website prior to your visit. Check to see if they have an allergen menu you can view ahead of time, and get an idea of what you plan to order. Call ahead, and speak to a manager, ask them if they will be comfortable serving you. If they hesitate at all go somewhere else, it's not worth the risk. Try not to go during peak times when the staff is super busy and stressed. I make sure the food I order is also safe for Mazzy. I don't want to have to worry about sharing, or even giving her kisses later on. Also if she ever, heaven forbid, needed CPR I would need to be able to give it to her. Also, recheck things often menus are always changing.

 

3-Some great apps you can get on your phone:

Allergy Eats- You can search for restaurants in the area, and see how others have rated them for food allergy safety.

Content Checked- You can scan bar codes on your food, and if it's in their data base it will tell you if it's safe or not.

 

4-DONT LEAVE YOUR EPI PEN/ AUVI Q IN THE CAR!!! It has to be kept at room temperature.(I have sadly frozen a couple) If it freezes, or gets to hot the epinephrine can be compromised, and may no longer be effective. Always carry 2 in case the first one fails, or there is a biphasic reaction.

 

5- When working with a babysitter:

You can print a babysitter info sheet from kidswithfoodallergies.org (http://community.kidswithfoodallergies.org/clip/food-allergy-babysitter-drop-off-emergency-form). I always make sure Mazzy has eaten, so they wont have to worry about a full meal, and then provide a couple safe snacks so they don't have to wonder about what is okay to give her. I give them a full run down of symptoms, and how to admin the epi. I feel like they need to fully understand what is expected of them, if it makes them uncomfortable, them I'm not comfortable leaving Mazzy with them.

 

6- Don't be afraid to advocate for your daughter. I struggled with this in the beginning. I don't want to be an inconvenience. But I needed to push past this, and tap into my inner mamma bear sometimes. I find that 99.9% of people are more than willing to make adjustments to accommodate Mazzy's allergy, and for that .1% that isn't....Haters gonna hate.

 

7- There are some great support groups on facebook. Search for food allergies and a whole list will come up. You might want to start with Food Allergy Kids Clubhouse ;).

 

8- Make sure you check out the resources available from Food Allergy Research and Education (FARE) http://www.foodallergy.org/home and Kids With Food Allergies http://community.kidswithfoodallergies.org  Both are amazing resources for anyone facing the unique challenges that come with a food allergy.

 

And finally...

 

9- YOU CAN DO IT!! You can make this work, and give your little May a happy, full, and safe way of living. There are literally millions of people living wonderful and fulfilling lives while managing a food allergy, and so will you.

 

Love, Jodi

 

What are some of your tips for the newcomers? Comment below!

 

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