Tag Archives: Allergy Precautions

EpiPens in Maine

Lawmakers in Maine are considering a bill all states should pass: “to allow pharmacists to prescribe and dispense EpiPens at no cost to the patient.”

See the article here:

MAINE LAWMAKER’S PROPOSAL TO MAKE EPIPEN MORE ACCESSIBLE

Every six months we have to shell out sooooo much money to purchase two sets of the generic version. (4 sets total: 2 for each child – one for school and one for home) While we feel thankful to be reimbursed for more than 3/4th of each set, that’s still a ridiculous amount of money!

Whenever I pick them up at the pharmacy, I always think about how many people… kids… babies don’t have the necessary protection that these devices bring because of the insanely high, immoral cost!

But like always, we must reflect on how blessed we are…

on how much TJ has improved since his first anaphylactic reaction …

and how we truly believe his body as well as Madi’s will be restored from all of these allergies.

But in the meantime, we stay prepared, always with two sets on hand.

Go Maine, let’s get more states on board!

Store Bought Favorites

Oh how busy life gets! There is always something to prep, cook or bake for, but not always the time to do so. Since TJ’s diagnosis, more and more great companies have been creating delicious treats... aka tasty time savers.

*Of course, always make sure to check ingredients and labels every time to ensure it is also safe for you and your family. Check labels with each purchase as companies do change the recipe here and there. Better safe than sorry … so cliche but true.*

Here are some of our favorite go-tos.

1) Mo’Pweeze Cupcakes: Mo/Pweeze Bakery

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2) Abe’s Crumb cake: https://www.abesmuffins.com/the-muffins

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3) Abe’s Muffins: https://www.abesmuffins.com/the-muffins

4) Azure’s Bagels: Cinnamon Raisin Bagels

 

While TJ’s teachers always have a box of Oreos as his special treat in case we don’t know about a party or event at school, we ask for a monthly schedule at the start of each month to try to prevent that.  Therefore, during the crazy weeks where dinner time is late and bedtime is even later, we are blessed to have found such amazing products and trustworthy businesses.

Guide to Holiday Hosting with Food Allergies

The following guide to hosting parties with food allergies was too amazing not to share. Smiling on to a safe and special holiday for everyone…

 

Grandma’s Guide to Holiday Hosting with Food Allergies

Source: http://www.mamacado.com/

Making The Holidays Happy AND Allergy-Friendly

Tbt – Anaphylaxis’ Abrupt Introduction & Why We Still Smile

Saturday, December 13 was a typical evening.   As I was setting up my son’s dinner, I was excited because it would be his first taste of yogurt. After two small spoonfuls, the verdict was in: he loved it!

However, within a minute it all changed.

He started to fuss and rub at his face.   Turning red, his lips and mouth swelled up as huge blotches formed all over his face, neck and chest. Although just an infant, fear was written all across his face.  After calling 911, an ambulance arrived in what felt like a lifetime.  In the ambulance, his state continued to get worse. I held an oxygen mask over his now slightly-blue lips.   As he started to zone out, I prayed that he did not lose his breath. When he cried, I felt a second of relief for he was breathing.

Asking the EMT repeatedly about his state, I now know that she too was worried.  Her silence spoke louder than any words could have. They did not have an EpiPen with them in the ambulance and called to meet up with another team on the way to the hospital. However, due to the snow, that did not happen. As the doors to the ambulance opened, they sprinted in holding my son as I ran behind them, helpless.

The hospital staff administered epinephrine, Benadryl, and a steroid then reassured me that everything would be okay.   It was 40 minutes after ingesting that tiny amount of yogurt and I now know that we were beyond lucky.  Not everyone gets those 40 minutes.

A moment of relief soon turned into the reality of what had happened. It mixed with guilt, throwing me into the most difficult place I had seen. That night, I slept on the floor next to his crib waking up every hour to check for breathing.  Yet, even in his sleep, TJ smiled on…

We soon learned that TJ was allergic to milk, eggs, wheat, oats, barley, rye, peanuts, tree nuts, coconut, sesame, soy, and peas. At first, I spent those early months trying to defend myself to others as a good person who did not eat too many peanuts or eggs during my pregnancy.  Or, explaining why I chose to continue breastfeeding despite these allergies.   I was explaining myself to everyone to try to prove that I did not cause this and I was not an awful mom.  However, it was unhealthy and I needed to shift my focus to best help TJ.

Therefore, I turned to writing, starting this blog (at first on a different site)  as an outlet for the emotions I was feeling and information that I was learning. By sharing our story, we hope to teach everyone with or without food allergies while inspiring others who wear similar shoes to smile on despite the challenges they face.   While we have just begun this journey, I have already learned to smile because:

1)      Special kinds of people wear these shoes.  Wear the label often thrown at you with pride.

For you are special.

2)      Make the most of it, don’t let challenges like food allergies define you. Only YOU can

define yourself.

3)      Ignorance is not bliss and needs to be educated.

4)      Let your faith be bigger than your fear.  Trust your instinct but always be prepared.

5)      Educating means advocating. Never apologize for it. Your child’s life never requires an

apology.

Last, but definitely not least, TJ continues to inspire me each and every day. Throughout all of our emergency room trips, endless doctor appointments, and the worst days, TJ always smiles, inspiring our blog’s name and giving others like me the courage to smile on too…


TBT(3)

The Truth Must Not Tiptoe

To You or Anyone out there that is ever asked to watch over my son for just a moment,

I must start by explaining how challenging this week has been. I stopped myself from writing this sooner because it would have had a much more angry tone. I do believe that emotions are much clearer once they have had a day or two to sort themselves out and time to be slept on…

sleep

With that being said, I can no long tiptoe around certain facts but instead I must wear “crazy mom” proud in hopes that the blatant truth even grabs your potential ignorance for a second. So while I write this, I pray for empathy…

 MOCKINGBIRD

To start, let me recap.  My little guy is not eating at daycare yet again. It started on Tuesday with two days of refusing any food from 7 am- 2:30 pm. On Tuesday, he ate nonstop when he got home though until he went to bed. That did change the later part of the week when he started to refuse many foods at home too. We are not sure what is causing this?

Is he cutting more teeth? (The bottom canines are right there about to cut through and the top canines reeked havoc a few weeks ago.)

Is it the cold and cough he had?

Is it being a toddler and going through yet another phase?

Is it all of the above?

Or, is it something else…

Heck, maybe he is bored with his restricted diet and we need to start getting more creative.


Whatever the reason for this strike is …

No matter how frustrating it may get …

No matter how challenging it is to manage a child with multiple food allergies …

There are several factors that are imperative for you to know:

1) The guidelines and safety procedures that we worked on for him during mealtimes were not created to make your life more difficult. ( Click here for daycare accommodation post.) Instead, they are meant to protect my son’s life. We do realize how challenging it is to manage many active toddlers and truly appreciate that all of you have agreed to work with us despite the allergies.

2) Please don’t tell me that my son no longer likes bananas when you haven’t even peeled it for him. I do thank you for the confirmation that my son is advanced but I am not so sure any 17 month old toddler is communicating enough at this point to inform you, “I won’t be eating bananas anymore so there’s no need to peel.” I am hoping that this is just teeth and a phase which will soon pass. I send in bananas every day because I am hopeful he will start to eat them again. Hope is what I thrive on…

3) Please don’t take it upon yourself to stop using the high chair we provided for snack and mealtimes because it is inconvenient to strap him into it then have to unstrap him five minutes later when I arrive to pick him up. Your inconvenience takes up ten seconds of your time that I am willing to take off your hands and do myself. Those ten seconds can protect his life.

4) Actually, let’s go back to the topic of actual food again.   Please refrain from telling me he no longer likes any of the food I ever provide. I can assure you that I know my son best and understand how his diet is very repetitive. I too believe he is bored with his food and I promise you we are working on it.  We don’t have as many options as most do and introducing new foods is often a frightening task.  With that being said, please also hold back from telling me to cut back on the amount of food I send in. What inconvenience does it cause if I continue to send in what he was typically eating at home during the summer?  …Once again, I am breathing on hope…

5) My son had an anaphylactic reaction to a tiny amount of yogurt. His dairy IgE levels are still very high as are the components of it that are more likely to cause anaphylaxis.  Therefore, there is a greater chance of a life-threatening reaction if he was to ingest it again. Many foods (more than you think) that people of all ages consume contain dairy.  Soooooo…..

He should never ever ever be playing next to another toddler or young child who is eating. The webcam shot is beyond terrifying especially since it wasn’t an adult who removed him from the area but instead, my 17 month old son himself. This is his life we are talking about. One taste of any of it and he needs his EpiPen or Auvi-Q administered. If he is the one removing himself and not an adult seeing this situation, I am not so sure how that can happen. It causes my fear to challenge my faith…

Please tell me how to make this easier for you to monitor him. We tried getting him a private one-to-one nurse for mealtimes … We bought him his own high chair for meal times … We will buy gates to separate the eating and playing areas if need be. I will do anything to ensure his safety and help all of you. I pray throughout each day that God guides me through all of my decisions and actions especially those that relate to my little guy. I pray you tell me how I can help you protect my son. Prayer drives my faith…

I know there will be close calls in general because of sending him to daycare.   Right now, it is not an option financially for me to stay home with him and protect him. I wish there was an easy answer to all of this. I wish that there were daycare facilities out there free of the top 8 allergens, not just tree nuts and peanuts. People don’t just have anaphylactic reactions to nuts you know? (Why aren’t there facilities like this especially with the prevalence of food allergies so high and increasing?)

If you or anyone out there is ever asked to watch over my son for just a moment, I pray that you can stop focusing on me as the crazy mom that I know you have labeled me as already.  Instead, I pray that you turn that focus to my son’s best interest and when you have questions ask me or suggestions suggest them to me.  Trust me that I am more than you think I am….

DAVID GOKEY

Instead, put aside your ignorance for a second and remind yourself that this is about life. My son’s life depends on it. So, open your minds and hearts by first tuning in your ears and actions.There are already too many “what ifs” in life to have to worry about factors that can be controlled.  Is it wrong of me to expect this? Are my expectations too high?

Until I have more answers next week, I am challenged by some fears. I fear that I will start to hear daycare facilities tell us that they cannot have my son. I worry that he will not be able to have the same experiences in life as others his age. I want to make his life as amazing as possible and teach him that food allergies like any challenge in life, can’t define you.   Only YOU can define yourself! 

But I need your help…

I am no longer angry at anyone… for I never stay that way for long. Instead, I am more motivated than ever to continue this journey of advocating and protecting my little “Cutes.”

LOVE

I hope that my honesty can help shut the door on ignorance for at least one person.  In the meantime, we thank you God because it is very evident that you are walking right beside our son, holding his hand through this valley, this journey that we can’t tiptoe around.  But with your strength and the truth, we can battle and smile on…


See more about allergy levels here:

Allergy Level Post

Dairy Components

Tbt – Coconut Milk Food Challenge (Take 1)

It was March 4, 2015.  The day that I had internally dreaded and battled for weeks and weeks now had arrived. Today would be TJ’s first food challenge where he would ingest coconut for the first time.

COCONUT

But before we recap that day, what is a food challenge?

According to Foodallergy.org, an oral food challenge is a highly accurate diagnostic test for a food allergy.” It is done with an allergist at a medical facility due to the potential risk of an allergic reaction. See more here: 

Oral Food Challenge – Resource 1

FOOD CHALLENGES

(Check out the link below for this awesome resource…)

Oral Food Challenge – Resource 2

(Source: http://www.kidswithfoodallergies.org/)


Since TJ was 10 months and allergic to most varieties of milk (almond, soy, cow’s, goat, oat, coconut), we were trying to figure out what route to take after I stopped breastfeeding. I do not regret for one second doing that crazy strict elimination diet from December through June to continue breastfeeding as I know that it was best for TJ’s health and safety during that time. However, we prayed that TJ’s body would mature and be able to thrive on another option as well. I could not breastfeed forever.

Therefore, his doctors analyzed his blood work to devise a plan. To complicate matters, testing for allergies via blood work is not always accurate. People can have false negatives and false positives within their results. (For more about blood tests and its accuracy, click here.) Because of his dermographism, skin testing is not an option right now. His skin reacts to many substances due to being hyper-sensitive, not only due to allergies. According to blood work IgE levels, coconut was his lowest level of his allergies.  Therefore, in theory, he had the least chance of having a reaction to coconut.

(Despite that, it is important to note that there is ALWAYS a chance of a mild or even severe reaction at any level. With an IgE level of 0.6, I was never told to eliminate coconut from my diet during the six months of the elimination diet.   Our doctor, allergists, and nutritionist all agreed, this was PROBABLY not a true allergy.)

Click here to see my post on Allergy Classification.

Still I did not find comfort in the “probably.” Actually, I’ve never found comfort in the “probablys” in life. (Ask my parents…  I drove them crazy growing up, insisting on a “definitely” if I was ever told “probably.” Now, I am still that same persistent self…. my poor husband … )

EMBARASSED

Anyways, I prayed and prayed that God would guide us and protect TJ.

FAITH 10

On the morning of the challenge, TJ woke up and he nursed like usual. After feeding for a few minutes, he unlatched and puked all over.  This had never happened before even before our elimination diet. This was different. It was not allergy related. It was his first stomach bug. The food challenge had to be postponed, and later cancelled until further testing.

I took it as a sign back then that his body wasn’t ready for any food challenges and that we would wait until his allergies were retested around his first birthday to come up with a plan.  For me, the exact timing of the stomach bug was not a coincidence. Instead, it confirmed that this was indeed God’s way of protecting TJ and showing us not to put him in the food challenge back in early March.   How amazing is that!

god is good

4 months later (in July)…

After his first birthday, TJ passed both a soy and pea oral food challenge. He was and continues to do wonderfully with both. It was recommended that he also participate in a coconut milk challenge then at 14 months old.  This time around I was not as worried as I had been in the past.  His body seemed to be making such progress with allergies. But we would soon learn why that word probably is often used…

TJ’s blood IgE level for soy was higher than coconut ever was. He passed soy and consumes it every day since. However, his body would reject coconut milk and cause him to mildly vomit and develop an itchy mouth when he went on to challenge it with his allergist. Therefore, despite levels, coconut is a true allergy and soy may have never been.  It is either crazy frustrating or fascinating … but all depends how you chose to look at it. All of this drove me crazy for awhile but now I accept it as part of this world of food allergies…

Looking back, I truly believe TJ would have had a worse reaction to coconut if he had challenged it back in March. Thank God for that “”perfectly-timed” stomach bug… . Never thought I’d say that

Most importantly, thank God for protecting him not only that day but every day, giving us more reasons to smile on even if it is without coconut…


What are your thoughts on or experiences with food challenges?  

Looking back, has anything negative like a stomach bug ever come at the “perfect” time for you?

 I’d love to hear what you have to say. 

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TIPSy TUESDAYS: Always Read Labels – The Reality of Hidden Allergens – PART 3 (EGGS)

From food to non-food products, it is extremely crucial to be on the look out for hidden allergens. Reading food labels and learning about ingredients becomes second nature when living with food allergies.   However, even when you are comfortable with a product, it is important still double check the label especially since companies can change the makeup of their products. In addition, the ingredients in many everyday items will amaze you at times.   I know that I continue to be surprised by many of the components of common foods and non-food products.

Here is some of the information about EGGS that I have learned throughout the course of this journey so far. (It does NOT include every location of these allergens as we are still learning.)

EGGS 2


1) EGG ALLERGY

In the United States, egg is one of the top 8 most common food allergies and second most common allergies among children. Like any allergy, it is important to once again read all labels, checking for any ingredients that may contain eggs.  According to the Food Allergen Labeling Consumer Protection Act (FALCPA), companies are required to label their products for the presence of eggs.  However,  there are some products that are not covered by these FDA allergen labeling laws and therefore, are exempt.

Some include:

  • Foods that are not regulated by the FDA
  • Prescription & over-the-counter drugs
  • Cosmetics, shampoo, mouthwash, toothpaste, shaving cream
  • Alcoholic beverages and tobacco products
  • Pet foods and supplies
  • Toys and crafts
  • And others….

For more information about product labeling, click here.

To read the complete law, click here.


EGG ALLERGY AVOIDANCE LIST & RESOURCE

The following link is an amazing resource for those with an egg allergy.   The link contains an egg allergy avoidance list and travel-size cards.  It also includes the hidden names for eggs.

Egg-Allergy-Avoidance-List-Hidden-Names

Source: http://www.kidswithfoodallergies.org


This second link contains food avoidance lists for the top 8 allergens.

Tips For Avoiding Your Allergen

Source: http://www.foodallergy.org/home


Eggs and Vaccinations

Some vaccines contain egg protein. Read more about this here.   This is why TJ now gets some of his vaccines at his allergist’s office. For example, about a month ago, he received the MMR (measles-mumps-rubella) shot by a nurse at this office.   While I was so anxious about him having this vaccine and any potential reactions it may cause, he was safely administered it with no reactions, minus a slight eczema flare-up. Unfortunately, we will soon need to schedule to get his flu shot there too since daycare requires it by law. Since the egg-free version Flublok is only FDA approved for people 18 years of age or older, this is not an option.

Egg Allergy & the Flu Vaccine


Eggs in my Wine?!?!?

Here is an example of just how important it is to read every single label.

Last May, I was on the elimination diet of all of TJ’s allergies in order to continue breastfeeding.  One Friday night as I waited for my husband to get home from picking up food, I poured some wine. Just when I was about to have a sip, I noticed its label…

WINE BLOG

“This wine was produced with the aid of egg fining, and traces may remain.”

This just goes to show everyone who is dealing with food allergies to read every single label even when it seems irrational to do so!


Since we want to educate others on the world of food allergies and believe sharing is caring, we continue to smile on…


Disclaimer: This blog is a personal blog and used as a way of sharing and connecting with other readers. The posts, articles, and stories shared on the site are meant as a source of encouragement. In this challenging world of food allergies, I have found reaching out to other parents and people in my shoes to be extremely resourceful and inspiring. Therefore, I want to give back and do the same. The information on my blog is not intended as medical advice so as always, please consult with your doctor.

TIPSy TUESDAYS – Always Read Labels –