Tag Archives: Allergy Misconceptions

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 2 (SESAME)

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 SESAME 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.)


1) SESAME ALLERGY

In the United States, sesame is one of the top 10 most common food allergies; however, currently only the top 8 are required by law to be listed on food labels.   Therefore, it is often trickier to manage. Those with a sesame allergy need to be aware of the other names for sesame.

Here are some of these other names for sesame: Anjonjoli, Til, Benne, Gingelly, Simsim, Teel

Also, with a sesame allergy, one must avoid all sesame seed and sesame oil products.  Sesame oil is usually not refined like many other oils.  Because sesame is a difficult allergy to manage, I have listed both the obvious and more hidden places where sesame seeds/oil may be found.

SESAME

Someone with a sesame allergy must avoid and understand the following words:

  • Sesame seed and sesame oil
  • Sesame Seeds = Sesamum indicum (The scientific name for sesame)
  • Sesame = Simsim (Name for sesame in East Africa)
  • Sesame salt = Gomasio
  • Sesame seed paste = Tahini
  • Halvah =sesame flour + honey; a Middle Eastern confection
  • Sesamol = component of sesame oil
  • Gingelly oil = another name for sesame oil
  • Hummus = spread or paste made from sesame seeds, chickpeas, olive oil, lemon, garlic (and other added ingredients based on variety)

Sesame may be hidden behind labeled ingredients of:

  • spices
  • natural flavors
  • seeds

Food items that sesame may sometimes be found in: (Very important to read every label and inquire when dining out.)

SESAME SUSHI

  • dips and spreads like chutney
  • falafel and related products
  • rices, noodles, stews, stir fry, risotto
  • sauces
  • processed meats, chicken, sausage, veggie burgers
  • breads, bagels, rolls, pastries,
  • bread crumbs, bread sticks
  • cereals and muesli
  • crackers, pita chips
  • cakes, granola bars, protein bars
  • candy and trail mix
  • appetizers (not just sesame chicken)
  • Asian cuisine (like sushi)
  • Middle Eastern cuisine (like halvah &tahini)
  • Gluten free products
  • And the list goes on…

Non-food items that may contain sesame oil:

  • lip gloss & products (Sometimes listed as sesamum indicum -sesame seed oil)
  • skin cream

Additional Sesame Seed/Oil Allergy Information

(Source: Allergy Experts US Website )

Sesame Allergy

(Source: Kids with Food Allergies Website)


Since I know I learned a lot by writing this post, I am confident that others will also find it informational so we 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 –


tbt- Looking Back at “Pre-Allergy” Moments

While food allergies have always been around, they are continuing to become a growing concern in our country. Before TJ’s anaphylactic reaction to yogurt in December 2014, like everyone, I knew what I felt like was enough about food allergies…

  • I knew food allergies existed.
  • I knew some people had life-threatening ones especially to fish and peanuts.
  • I knew people carried Epi-Pens for these life-threatening ones.
  • I knew that I had to check which students in my class had them and check in with the nurse before classroom parties if a class had any major allergies.
  • I knew my husband had a minor walnut allergy and fish allergy, but could eat shellfish.
  • I knew how annoying seasonal allergies could be since I had experienced a few bad years of needing Allegra D almost every day back in my 20s.

With all of these “knows,” I thought I had enough insight to this world of food allergies.   However, today as I look back on certain moments before TJ’s initial reaction, it is eye-opening on how naive I really was, without meaning to be.


MEMORY 1: Our Honeymoon “Your Salmon Looks Sooo Delicious”

In going to Aruba for our honeymoon, we had heard about the amazing restaurants and food. In fact, it was night one where we had one of the best meals of our lives. Back then, when we went out to dinner, Timmy would usually order filet mignon and I would enjoy fish. During dinner on one of the first nights there, I ordered a delicious salmon. When we were almost done, Timmy asked if he could try some because it looked too good not to. I questioned, “Aren’t you allergic?” To which Timmy said it had been years since he had ever tried it and who knew if he was still allergic. So he took a bite.  I worried a bit because I’m a natural worrier but not to the extend at which I should have.

Within minutes, Timmy’s lip started to swell up and he said his mouth was getting very itchy. So we paid and went back to our room. At the room,  he complained that his throat was feeling a bit weird while his lip was still quite red and swollen. We were both more scared now. All I had was my seasonal allergy medication, so he took an Allegra-D and we waited to go to sleep to make sure he was okay. He doesn’t have an Epi-pen.

The next morning we woke up, went to the gym and pool all day, enjoying cocktails while laughing at the previous night’s experience.

Now, after TJ’s reaction to yogurt, I would NEVER ever let something like that happen again and react so relaxed like that. Knowing what I know now about how severe and unpredictable food allergies and reactions can be, I know we were lucky.  Thank you God.

 


MEMORY 2: Wedding Walnuts

As if that experience with Timmy’s ” fish experiment” wasn’t enough, there was also some walnuts tried. Timmy and I have been to 37 weddings together to date ( Yes, I’m weird and keep a count in my phone). There was a period of a few years where we had anywhere from 5-9 weddings a year to attend. In going to many of these beautiful events, we learned how common it was for them to serve a salad with walnuts. Most times, Timmy asked for his salad without these or didn’t eat the walnuts in it since he was allergic. However, twice he forgot or didn’t see them, eating some walnuts. In those moments, because nothing happened, we laughed and told friends at the table about our honeymoon fish story.

However, after learning through TJ’s experience, he should NEVER have done that even though both those times he had no reaction to walnuts. Sure, he may have outgrown his allergy to walnut, but I would urge him to go to an allergist and be tested before he ever tried anything else he was or may still be allergic to.  Food allergies and reactions can be sooo unpredictable and even life- threatening. You could have a minor reaction to an unsafe food twenty times and then the twenty-first time you ingest it,  it could be severe. Therefore, no one should experiment on their own  and always ask for a salad that has not been handled with the allergen. (Don’t just pick out the walnuts if you are allergic.) Wedding venues are now becoming more educated about all of this. At one of the last weddings I attended, they mentioned food allergies on the invitation’s menu even.

 


MEMORY 3: Peanut Free Classrooms

While I was still on maternity last September and October, I heard through colleagues about a new student who would be attending our middle school. From what I had been hearing, she had an allergic reaction to peanuts as a young child and now her parents hired a lawyer to make our school peanut free. Everyone, including myself (I must admit), thought it was a little too much. While I am very empathetic to everyone’s situations, I did enjoy eating peanut butter and banana sandwiches many days for lunch and stressed about what I would eat if I couldn’t bring this to school. ( It’s crazy to look back at what I was worried about back then and how much I have changed in regards to what I focus on now.)

During a conversation with my breastfeeding group moms, I brought this situation up, still feeling that it was a bit overboard. One of the other moms nicely mentioned that she understood where the parents were coming from since her oldest daughter had multiple food allergies including peanuts. She brought up very good points that really got me thinking.

That was the end of October and just around the time when TJ started to have random hive and rash outbreaks. Soon, these parents’ motive and experience would become one very close to my heart. I just didn’t know what we were soon in store for. Now, I  relate to these parents.  In fact, it gives me a deeper sense of respect to not only them, but all parents out there who are speaking up and doing whatever they need to do to be their child’s biggest advocate. You are all heroes in my eyes.

MEMORY 4:

 

Because we continue to learn more and more, we realized how lucky we are and smile on…