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?

Follow us on Facebook: www.facebook.com/talkformetees
We have a website! www.talkformetees.com
Is Twitter more your style? @talkformetees
Or maybe it's Instagram... @foodallergytee

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!

 

Visit us please:

https://www.facebook.com/foodallergykids

https://www.facebook.com/talkformetees

www.talkformetees.com

Instagram: @foodallergytee Twitter: @talkformetees

 

 

 

 

 

 

It's Been Called a Sisterhood

I was just getting ready to tip Mazzy back in the tub, and wash her hair, when my phone rang. "Hi Jodi, are you guys home?" came a worried voice through the phone. "Yeah! what's up?" I replied. The sweet worried mother on the other end was calling because her son appeared to be having an allergic reaction. The reaction was slow to develop, and it was hard to know for sure what was causing his symptoms. But, she just felt like something wasn't quite right. I made my way to her house, and together we talked about his symptoms. We discussed what our doctors had instructed us to do, and finally I supported her in the decision to take a trip to the E.R. Turns out, he was having a mild allergic reaction. They administered the needed treatment, and kept him for observation to make sure the reaction didn't progress.


When we first found out Mazzy had a peanut allergy, I had no idea how much this diagnosis would change our lives. One day as I scoured the internet for tips and tricks to help me navigate this complex new world I came across a comment, or post, or blog, I can't really remember what or where, but the words stuck with me...They referred to this community of Mom's working to keep their children safe as a "Sisterhood". At the time the words stuck, but I didn't truly feel their meaning. Last night as a knelt next to this loving mother, and her scared little boy, I felt the true weight of these words. I was grateful to know if I find myself in a similar situation, she would be there to walk me through my anxiety ridden thought process. I didn't do much last night, but reinforce her thoughts, and make her feel comfortable and confident in her decisions. But, I know how valuable that little bit of help can be in a confused and panicked moment.

 I am so blessed to know other Mom's that live within blocks of my home, that face the same challenges, and can offer tons of great advice and ideas. Not only am I blessed with the companionship of these wonderful sisters, but I have found wonderful support and friendship through many I have met online. It is amazing to have the ability to sign on to Facebook or Twitter, post a question, and to receive back words of wisdom and encouragement from other Moms facing the same trials within minutes.  I am so blessed to have such an amazing support system out there. It stinks that allergies have gotten so much more common than they once were, but in this has come the opportunity to be able to reach out and support each other through this trial. I know that I am not alone in this, and am grateful to be a part of this sisterhood.

The Power Of One Second.

"Just a second" I say over my shoulder as I attempt to finish wiping down the dining room table...but this is the very second my sweet 2 year old desperately needs me to find her paint brush. She is creeping into full melt down mode, and every second that ticks by gets us a touch closer to complete toddler devastation. In this moment I realize the power of the second. It's a tiny little space in time, and they pass each and every day without much thought or recognition. But in reality it only takes a split second for your life to completely change directions. It only takes this small glimpse of time for the powerful and the beautiful to take place. As I started to think on this a bit more I realized how blessed every second of my day can be if I only choose to look
for the blessings that they contain.
 The second I here "Mom" from the next bedroom in the morning. The second I get a sweet text message from my Darling wishing me a good day. And the second I step out the front door to feel the soft sun shine down on my cheeks. I realize how important it is to be here, now, in this very second. The T.V. is off, my baby is napping, and I hear nothing but the tick of the clock, and the clack of the computer keys. Right now things are at peace, and I am grateful. I spend so much of my time worrying about the future. Where will we eat on vacation this summer? It's going to be tricky to manage a food allergy outside the comfort of our home. What did the other children in her nursery class have for breakfast...and did they wash that peanut butter from their face and hands before rushing out the door? Where can I take her after our play date this weekend that will be as much fun as the Chick-fil-A play place the other little ones will be enjoying? But even as these thoughts and worries of the unforeseen, and usually manageable, future creep through my mind I am wasting tiny little seconds of my day. The truth is we will make it work. All of it. We wont starve on vacation, and she'll love to have a picnic lunch with me on the grass just as much as she would love Chick-fil-A. We could even blow some bubbles, maybe Grandma could meet us there. And truth is there is not one thing I can do to control what others have for breakfast, only what happens if she does have a reaction, so there's no use worrying about that either. I wonder how many seconds of my day are stolen away from me in a cloud of worry, doubt, and concern. I wonder how much more good I could be doing with my time, and my thoughts. So I now resolve to stop those sneaky second thieves, and allow myself to live in the present. To be here now. I promise to note the soft warm blanket that is draped across my lap. To smell the sweet bubbles drifting up from my little Scoot Boots bath. To notice, and be grateful for, the beautiful emergence of spring. And, to take those seconds back, and use them to show my loved ones that they are my world. It is up to me to teach my little one that although we must be very careful, and take certain steps to insure her safety, that the list of things in this world she can experience is so much longer than the things she can't. It is up to me to teach her how to find the beauty in the everyday, and be grateful for her many blessings. Life is beautiful. And now I am going to go live it! :)

Wipe the frosting off your fingers and ponder with me a moment!

     Today I am doing a little pondering.  I do more and more of that as I mature (get older).  No reason to say just how old I am, but we all know that I'm a Grandmother and so that would mean I have put a few years behind me.    
      Anyway back to the pondering.  This past year I have learned a lot about food allergies and the past several years I have learned a lot about sugar and carbs.  I like what I have learned.  I feel like I am healthier and happier physically, more informed mentally and more empathetic emotionally.
      Over the years I have experienced food in many different ways.  It has been a part of celebrations, a reward, a companion, a comfort and a delight!  Christmas couldn't possibly be Christmas without cherry pudding.  What would a camp out be without s'mores?  I've made birthday cakes in the shape of dump trucks and Barbies.  I've entered the Pillsbury Cook off (never winning, of course) and even won a local cooking contest with my famous marshmellow brownies.  I've bought sugary popsicles for a sick child, and special treats for 100% scores on spelling test.  I've rewarded my piano students with treats for every day of practice and I've achieved reverence in my church class with suckers and tootsie rolls.  I've popped popcorn for a movie, made hot chocolate for after tubing, and always had lemonade and cookies for when we got out of the pool.  I was first to sign up for room mother and spent hours making spider cakes for Halloween and sugar cookies for Valentines day.  If a neighbor was sick or having a hard time I've baked them a treat or some homemade bread.
     My goodness as I ponder I realize that food was apart of everything.  Good?  Bad?  Maybe neither, but worth pondering and considering what I have learned and how it has changed the way I look at food.
     My husband had always been borderline diabetic.  His Mother died of complications of diabetes.  He knew he should be watching his weight and what he ate, but how could he be asked to give up his chocolate milk and Snickers bar.  Anyway, it was borderline, right?
    Then it wasn't.  One check up several years ago it tipped the scales and now he had full blown type two diabetes.  Was he really overweight.  No.  Maybe only ten or twenty pounds, but did that matter?  No.  The prognosis was still the same.  If you don't do something now you will damage your body to the extent that you will experience blindness, amputation or death.  All consequences of untreated diabetes.  Ponder that!
      We began to see food a little differently that day and over the past few years as we have watched our carbs, refined flours, and sugars we have also become educated about good foods and eating habits.  We have learned that food can make you healthy or it can kill you.  We have chosen healthy and it is good.  My husband is no longer on any meds for diabetes and his numbers are back in the healthy zone.  Does that mean that we never eat a sweet treat or share a fry?  Of course not.  But we do it sparingly and we often replace it with a nice crispy apple or a healthy serving of salad.  It's great and we hope that it will help us stay healthy and backpacking for many years to come.
     Last year we learned that our little Mazzy Mae had a peanut allergy.  Would this mean more changes to our diet?  Certainly.  Could we make them and still be happy?  Sure.  Would it take some effort?  Yes, but well worth it.  And most of all would we learn from it and become better because of it?   I hope so.
     As I ponder my experience with food these last few years I am grateful that I am being taught.  Taught that food was meant to keep our bodies healthy, not cause disease.  Taught that food doesn't need to be part of a good time.  Taught that life isn't all about food and that even if it were I would sacrifice for those that I love so that they could be safe and healthy. 
     In a society plagued with food related health problems, obesity, and a rising population of food allergic children maybe we should all take a minute to ponder what role food plays in our lives and to make adjustments if we don't like what we see.  Let's find joy in a hike, a book, a friend, a hobby, a museum, a playground, a concert, a ballgame, a sunset, a snowstorm, a quiet moment, a crowded room... let's put food in it's place and always remember that life is wonderful with or without the cupcake!

Love for those that make food allergies a little easier!

Today Mazzy and I had the pleasure of attending our first Valentines Day party. My friend and neighbor Kalie put together such a sweet little Love Day themed play date, and bless her wonderful soul made it candy free so me and my little lady could attend without worries. The kids brought valentines to share that included pencils, stickers, kazoos, and glow bracelets. Not only are these items allergen free, but they last a whole lot longer than the usual candy hearts. So in honor of this affectionate holiday I thought I would give a shout out to some of the products and support teams that make my life as a food allergy Momma a little easier. So...in no particular order!

#1: F.A.R.E (aka. Food Allergy Research and Education) A year ago I had no idea what F.A.R.E was. Now I use them as a resource for dependable information, pintable's, and support. It means so much to me as a Momma that they work so hard to raise awareness, They have a big voice and are very wise in the way they use it. Thanks F.A.R.E!!

#2: Dum.Dum Suckers- Sometimes a "treat" is needed, and luckily these multi flavored suckers are free of all of the top 8 allergens. Our favorite go to for the treat bucket at the bank, we also indulge at the local post office here. I always sigh a little prayer of thanks when my little lady gets to partake right along with the other little ones.

#3: Kids With Food Allergies Foundation- I remember watching my first webinar on eating out with food allergies... After watching and absorbing as much info as I could, I felt so much more confident and hopeful. I now call ahead, carry our chef cards, and work directly with the manager any time we eat out. They have provided me with countless resources and valuable tools to keep my little lady safe. The support forums are a wonderful way to connect and collect advise from the experiences of others.

#4: Culvers- Looking for a place for a really good hamburger and fries? I was so surprised and excited when I informed the cashier of Mazzy's allergy. The cashier was obviously well trained, and promptly entered the allergen info into her computer...up on the screen in big red letters pops up PEANUT ALLERGY. The cooks note the heads up and quickly wash all prep surfaces, change their aprons, and wash their hands. This was not what I expected from a "fast food" joint, but I was so grateful I almost cried (literally).

#5: Sunbutter- A most delicious and healthy alternative to the traditional peanut butter. Our house is never without a jar or two...ever had a Sunbutter cookie? Sooooo good! Free of not only those pesky peanuts, but tree nut and gluten as well. This company not only makes a great product, but has made such a loving effort to reach out and support the food allergy community. I think I need a Sunbutter and honey sandwich :)

What are your favorite go to brands, products, and support teams? I can use all the tips I can get.
Please comment, or shout it out on the old FB page....

https://www.facebook.com/foodallergykids

Or maybe twitter is more your style...

https://twitter.com/TalkForMeTees

Why Not? I mean....it's only a childs life I guess.

 

 

So, something I have noticed, not only in myself but also as a recurring sentiment from other food allergy parents, is that there is often a feeling of guilt for "inconveniencing" everybody that might have to accommodate our child's special diet. I find myself cringing at the annoyance we must be creating, and hoping that this wont prevent further invitations for my little lady to participate. An easy example, and current hot button issue that I have yet to face, but will in time, is making school a safe place for a child with food allergies. I was talking to my Mom about this just the other day, and I heard myself say "I understand they can't make everyone change because one child has a food allergy". My very wise mother then stated plainly..."why not?"

Think about it. If you stop and think about what is at stake how can you argue any other way? It's not just a matter of a rash, or hurt feelings. In so many cases a child's life is at risk! What could be more pressing and important than a CHILDS LIFE!! Go ahead, I dare you, to give me a legitimate argument against banning food from the classroom (not the lunchroom) when you look at things in that context. In fact I would love to hear what is rolling around in your mind, I am open to hearing and learning from your point of view.

 People would be shocked if a school refused to provide a wheelchair ramp. A school would literally be shut down if they failed to maintain and comply with current fire safety standards. And how about we just get rid of recess aids and crossing guards. We do so many things as parents, teachers, and caregivers to keep children safe. But I can't help but feeling that we are failing miserably in an extremely critical area.

 I understand that many out there don't understand the science of cross contamination. And others are facing their own dietary challenges. But I would hope that we as adults can learn to understand and support each other as we all learn how to deal with this life threatening condition.

Let's find new ways to celebrate birthdays. And instead of having a Dad's and doughnuts day, lets take dad out and plant some trees or flowers. Lets get creative and find new ways to award our children for their achievements. I'm going to say it once and for all... The classroom is just not the place for food anymore.

So, food allergic parents, we need to stop apologizing and feeling guilt for protecting our child's life. It is expected of you as the guardian of your child's life and wellbeing. And, non-food allergic parents, you are blessed not to face this challenge, and please be patient with us as we do. Let's work together to create a safe and happy environment for all children to learn and grow.

Again I would love to hear your thoughts, I am sure there is much to be learned and considered.

What am I so afraid of?

 

The last year of my life has been so different than anything I've ever experienced. It feels like the rug was pulled out from under me but I still haven't hit the floor. I've been waiting for things to finally settle. I've been waiting for the thud, but instead I seem to be moving in slow motion not sure what to grab onto to prevent the crash. Don't get me wrong, my life is incredibly beautiful. I look about and can see rich blessings everywhere I turn. And on a day to day basis I am happy and hopeful and content. But, last night it hit me... I'm scared of so many things. At first when I realized this I was annoyed by my weakness, but then It came to my mind that if I wasn't growing and learning and changing I would have nothing to fear. So, what is it you ask that haunts my thoughts as I sweep the floors and do the dishes? What is it that creeps into the shadows of my dreams? I am afraid that I will not be able to provide the full and wonderful life my sweet daughter deserves. I am afraid I will fail at being successful, and I'll have to face giving up on building my own business. I am afraid that people wont understand that even a trace amount of a peanut can kill my daughter. I'm afraid of putting myself out there for people I don't know, or maybe even worse that I do know, to see me for who I really am. I'm afraid to speak out about something I am so passionate about, and to have it rejected. I'm afraid to speak up and educate people about food allergies because I don't want my actions to cause Mazzy any harm, such as bullying or exclusion from activities. I'm afraid say to much and risk annoying others or being a burden. When I look at this list I can't help but think of the scripture

"For God hath not given us the spirit of fear; but of power, and of love, and of a sound mind." (2 Timothy 1:7)

As I switch my mind set into this new perspective I find great wisdom and comfort. It is out of pure love for my daughter that I have started this journey, and those that don't see it that way are just not in a place to truly understand what I am facing. I am ready to take hold of the power I do have to protect her, and hope to be of sound mind as I go forth to do so. I am ready to speak for her when she cannot, and will be there as she learns to navigate and accept the challenges that come with a food allergy. I am ready to extend an arm of love and support for those that have not been able to find it elsewhere, or are fighting a battle to further the cause at the cost of their own strength. I am ready to show and learn from my vulnerabilities in order to help others find their way down the right path.

As I do this I cannot guarantee to always be right, I still have a lot to learn. And I cannot guarantee I wont stumble and be fearful again. But to those of you that understand the challenges I am facing I am hopeful that we can come together to support and guide each other. And to those of you that don't understand, and may find my constant push for this cause an annoyance, please understand it is my child's life at stake, and you would do the same.

So for now I plan to push forward. I will look for every opportunity I can to speak up at church, through the schools, at community functions etc... You will see me with my little booth complete with safe "treats" and a demonstration on cross contamination. I will post everything I find informative and useful on Facebook, Instagram, Pinterest, Twitter, and any other SM outlet I think might get some attention. I will continue to create awareness t-shirts for my little lady to wear to help keep her safe. I promise to be "That Mom" Because for every person that I can reach and educate there is one more child that is a little bit safer. The more I talk, the more people will understand, and the safer our children will be.

Join me in my cause....

Visit and like our FaceBook Pages:
https://www.facebook.com/foodallergykids
https://www.facebook.com/pages/Talk-For-Me-Tees/215850248581440

Follow us on Twitter:
https://twitter.com/TalkForMeTees @talkformetees

Follow me on Instagram:
#talkformetees

Buy a shirt for you little food allergy cutie!
https://www.etsy.com/shop/TalkForMeTees?ref=si_shop

The Case of the Frozen Epi....

 

It all started one evening that was much like any other evening. The Hubs and I had just returned from the grocery store, and little miss was in a state of tragic exhaustion. As you know, when two year olds get tired, they also get very irritable, and when a two year old gets irritable they are very good at expressing said irritation. So my Mom brain instantly switches to survive until she's in sleep mode. The plan...I take Mazzy into the house kicking and screaming, preferably without injury to either one of us. Pin her down long enough to change into p.j.s, and snuggle her to sleep. While I'm doing this my sweetheart has volunteered to carry in the groceries. After a hectic 45 min. little lady is sleeping, and my sweetie and I are headed to bed ourselves.

So, here in Utah it is very cold in the winter. It often gets down into to teens during the night. In fact on the night of this incident I believe the low was about 15 degrees. And, as anyone with an epi pen knows, it should not be allowed to get below 67 degrees.

When I woke up the next morning it just felt like a good day. The sky was blue, and the ground a crisp and sparkly white from a light dusting of snow. Mazzy woke in a sweet and excited mood, I was having a particularly good hair day, and my darling was giggling and teasing with Mazzy while I got ready to go to our Sunday services. I was just thinking to myself what a lovely morning we are having when I reached for my lip gloss...where is it? Oh! I left it in my purse...where is my purse? After marching between my different "purse spots" several times, I finally stopped and let the dred set in. The only place I hadn't checked was the car. Without even putting a coat on, I slipped my husbands giant snow boots on and clumsily tromped out to our car. With a groan I saw it there on the other side of the car seat. My purse/ the epi pens had officially spent the night in the car freezing. It's okay, I got this I told myself...the pharmacy has another rx on file. I'll just run pick it up, and we'll be off to church as usual.  This might have been the case if our insurance hadn't just switched, but after 2 hours trying to track down our new insurance number on a Sunday, and a couple trips to the pharmacy to sort things out we still didn't have all the info we needed, and would have to wait until our insurance opened back up on Monday. The thought of living with out an epi for 24 hours terrified me.

 Mazzy stayed with us in the adult classes that Sunday, and had to miss out on her beloved nursery. And then the family party later on was an even bigger source of anxiety than usual. When it all comes down to it we were able to replace the epi's. But, I definitely learned a couple gems of wisdom in the whole fiasco of it all...

1. Have a set of "take along" epi's that stay with us on our outings. As well as a back up set that stays home in a temp controlled medicine cabinet.

2. We are so blessed to have insurance. The cash price of $876.00 almost made me faint when I heard it. My heart goes out to those that struggle to find a way of having this life saving medication on hand.

3. I need to find a way on reminding myself, even in the hectic moments, to make sure the epi's are accounted for and usable. I set an alarm on my phone. Here's to hoping that works.

And last, I learned that if my husband and I work together as a team we can take the steps needed to keep our most precious treasure safe.

The End.

What clever ways have you come up with to keep your epi's close at hand? Please tell me I'm not the only one that struggles with this. Let us know in the comment,s or on our Facebook page: https://www.facebook.com/pages/Talk-For-Me-Tees/215850248581440

New Graphic Available from Talk For Me Tee's!

Ta Da!! New graphic ready to go. SO excited to get this one out there. Mazzy was so pleased with her new shirt I had to bribe her to take it off for her bath. My Mom and I started this line of graphic t-shirts to help alert people of Mazzy's allergy...But we quickly realized it is so much more powerful than that. These t-shirts start a conversation, and give us the opportunity to help educate and raise awareness. Find our shirts in our Etsy shop at https://www.etsy.com/shop/TalkForMeTees?ref=si_shop. Will also be available on Amazon soon.

The Lessons of 2013

Well we have officially been a "Food Allergy Family" for a year now, and I have certainly learned a lot in the last 12 months. It seems appropriate to make note of some of these lessons as the new year approaches. Hopefully someone out there will find some wisdom here that will help them as they navigate the world of allergies. I have narrowed it down to my top 5 (in no particular order)...

1. I am surrounded by wonderful and loving people! So many people have gone above and beyond to help keep my little lady safe. My Mom went through her cupboards and threw out anything peanut, or processed with peanuts or tree nuts. The nursery leader at our church not only switched out the snacks, educated all adults that would be using the space and supplies, and made sure all those that would be around my Mazzy were trained to recognize a reaction and could use an epi pen. He then went through and cleaned all the toys to insure no residue from previous use was possible! And a  good friend of ours only packs safe snacks for her little one so they can safely share a treat. Just a few examples of the kind acts that have made my life a little sweeter this year.

2. What would I do without the internet?! My hat is off to all those that had to face the world of a food allergy before the internet, and more specific labeling practices. Armed with my smart phone I head out the door on a regular bases ready to pull up allergen menus and product info at the drop of a hat. I can't tell you how many times I've googled this year. Not to mention the incredibly valuable support system I find in the many blogs, forums, and groups scattered about. The internet is such a powerful tool for us to utilize as we strive to get the word out, and educate people about this growing issue. Yay internet!!

3. I can be creative! I'm not just going to tuck my tail and run from some silly food allergy, and I don't want Mazzy to ever feel like she should either. With great products out there like Sun Cups and Skeeter Snacks we are able to enjoy a yummy treat with the best of them. Hand me a recipe and I can substitute it to peanut friendly perfection. I read the things other parents go through to create milk, egg, or gluten free goodies in awe.  Things are just getting going, and I'm sure I'll need to keep my creative thinking cap active as we face our little obstacles here and there.

4. Get Involved. I'll be the first one to admit I have found my patience more than tried when people just don't seem to understand... Like when someone puts leftover peanut butter bars on my plate of safe cookies I planned to take home. Or when I go to another party where the same beloved family member has forgotten to check the ingredients, and always manages to buy something that isn't safe. So, instead of just heading home and grumbling about it to my husband I decided I need to be more involved in the solution. Make T-shirts, start a blog, have a Facebook interest page, create a Pinterest board, volunteer to do a presentation for the PTA, ask to be on the food committee for community or church functions...JUST DO SOMETHING! Because the more we talk, the better people will understand, and the safer our children will be.

5. We can do this!! When we got the official peanut allergy diagnosis I didn't have any idea how much my life would really change. But, to be honest if I look at the bright side our whole family is healthier and more aware than ever. We cook more whole food from scratch now, instead of buying boxed up processed stuff. And eating out is a rare and planned event rather than a quick impromptu meal. Also my Mom and I have started a line of baby and toddler t-shirts to help raise awareness. And as a family we have started to focus our celebrations and holidays on non food activities cutting out loads of junk food.

In all this has been a tremendous year of growth for us, and I have much to be very grateful for. So here's to the year 2014. I can't wait to see what adventures you have in store for us!!

Because I'm A Grandma

     Dealing with a food allergy is a family affair!  Not only does it have an impact on the child with the food allergy, their parents and siblings it also impacts grandparents, aunts and uncles, cousins, and even the family dog.  No more peanut butter doggie treats for Kookie. 
     Let me introduce myself.  My name is Jeanne, or more affectionately known as Grandma Jeanne.  I will be posting on this blog along with my daughter Jodi.  Our perspectives will differ but our concerns and motivation will be the same.  We want to make life better and easier for little Mazzy Mae as she deals with a peanut allergy and as we do we want to reach out and  share what we learn with others who have kiddos with food allergies.  I have 13 grandchildren right now and will be welcoming another one in April.  They range in age from 21 to 18 months.  Right now there are 8 boys and 5 girls. The one on the way will be kept a secret until it is born. 
     With twenty-one years of experience as a grandmother I have learned a lot.  I know how to quiet a crying baby,  build a fort for four year old twins, patch a torn football jersey,  backpack in the wilderness with teenage boys, have an indoor hot dog roast by the wood burning stove and a camp out on the living room floor, give advice about girls, give advice about boys, take their side when they need someone too, attend a concert, attend a wrestling match, attend a primary program, attend a soccer game... I know how to do so many wonderful things because I am lucky enough to be called Grandma.  Now I am learning how to do something else.  I am learning how to understand and live with a food allergy.
      Bright, beautiful, and simply perfect (as may I add are all my grandchildren) little Mazzy Mae is helping me to understand and empathize with families and children who are dealing with a food allergy.
      Since we found out about Mazzy's peanut allergy my eating and shopping habits have changed.  The first thing I did was remove all, yes all, food items in my house that contained peanuts, or were processed in a plant that also processed peanuts.  Next I began reading the labels of everything that I purchased and brought into my house.  No more peanut butter for sure, but also no more of many other items that I had never realized would be a problem.  Cereals, granola bars, cake and brownie mixes, breads, all bakery and deli items; the list goes on and on.  Does it sound hard?  Yes, but it is so doable and such a small effort to make to help ensure Mazzy's safety.
      I have put fences around my yard, acted as lifeguard for my pool, buckled car seats into my car, bought helmets for the bikes, said be careful and look both ways more times than I can count
... and I will  learn everything I can about food allergies!  After all, life isn't all about food, and it can be wonderful with or without that peanut topped doughnut. 
     We hope you will join us on our journey as we strive to make this blog a place where food allergies take a backseat and experiencing life with our wonderful children and grandchildren takes center stage!  I am looking forward to sharing, growing, and learning together.

Food Allergy Kid's Clubhouse: Welcome to our clubhouse!

Food Allergy Kid's Clubhouse: Welcome to our clubhouse!: It was November of 2012, and it had been one of those perfect sunny fall days. My sweet little Mazzy Mae had played happily all morning, e...

Welcome to our clubhouse!

It was November of 2012, and it had been one of those perfect sunny fall days. My sweet little Mazzy Mae had played happily all morning, eaten lunch like a champ, and was now settling down for her afternoon nap. She was 1 year old at the time, and we had decided to mix things up a bit for her lunch. Her pediatrician had given the green light for peanuts, so we decided to spread a little peanut butter on her toast...About 20 minutes into a nice quiet nap my little sweetie woke up quite agitated. Now at this point one would probably assume I would link it to the peanut butter I had just fed her, but I failed to make this connection right away.

Maybe it was because it was a good 20-30 minutes after she had eaten it. Or maybe it was the fact that it was cold out, so she was fully bundled from head to toe, causing me to miss the hives that covered her little body. And when babies cry their faces get red and swollen right? So, in an effort to calm her we bundled up even more and headed out for a brisk walk. Mazzy loves to be outside, and walking is one of her most favorite things to do. Into the stroller I put her, and she seemed to settle right down. As we where walking I noticed she had developed a little cough..."poor thing maybe that's why she can't sleep" I thought.

It wasn't until we got home about 30 minutes later that I started to peel back the several warm layers. Underneath to my horror I found big red hives covering her back, stomach, and down both legs. I called her pediatrician immediately, and was instructed to get to the E.R. right away. How could I have missed this? What if she had passed out on our walk, I would have just thought she had fallen back asleep? What testing will they need to do on my baby? How is this going to affect us/her for the rest of our lives? These are just a few of the questions that flooded my mind on the way to the hospital. A couple weeks later it was confirmed...My Mazzy has a peanut allergy.

Chances are, if you've found us it's because you have a similar story to tell. And you now find yourself trying to navigate the world of food allergies. I don't need to list statistics for you, because you've already read them all. And I don't need to tell you again how tricky/scary it can be to have a little one with a food allergy...you already know. So, let's try this a different way. We've created the Food Allergy Kids Clubhouse to be a positive resource. A place to come and find non food ways of celebrating. A place we can post positive food allergy articles and stories. A place for me and I'm hoping you to post your little everyday triumphs. Because we simply need to hear that our kiddos are going to grow up just as happily and fulfilled as the next kid.