Food Allergy Burn Out

I’ve been MIA on the blog lately and if I’m being honest I’ve kind of just been in my own little bubble for awhile…I sometimes get so bogged down with decision fatigue that I literally shut down and shut everyone out. I’m exhausted and burnt out with trying to find alternatives, new recipes, safe foods that are REALLY safe and having so many recipes that I try just flop that I’ve even stopped experimenting with baking. Baking is my happy place and I hate it right now. I make banana and applesauce bread in my bread maker a few times a week for breakfast and that’s it…

I’m burnt out from reading labels, making sure no one tries to feed or touch MH at church dinners, wiping my kids down basically from head to toe after eating anywhere away from home, explaining MH’s allergies to at least 5-10 people about 3 times per week and just ALWAYS BEING ON GUARD.

I’m mentally exhausted and I just want to quit…BUT I am a food allergy mom and quitting IS NOT an option. I will not quit protecting my child.

She’s come too far to have me throw in the towel. I will continue to read every label, wipe down all five of my amazing kiddos after they eat anything away from home, I will keep telling people as often as I need to about why they can’t give her that treat or this piece of candy. I will stay away from restaurants and as many food centered activities for a little while longer and I’ll get better. No matter how burnt out or mentally exhausted I am I will always snap out of it and protect my child. My love for baking will hopefully return and maybe this stage of food allergy mom grief will pass me by pretty soon…but for now I’ll keep my brave face plastered on and keep on going. I’m a mom and that’s just what we do! 😊

~Hope

I hate allergies

I HATE food allergies… It’s true I said it. I hate having to always worry if I have the Benadryl around… and of course the EPI pens. (Which I am so eternally thankful we’ve never had to use). I hate going to a restaurant and not being able to just order without a lengthy explanation to the waiter or waitress. I hate that almost every time it comes wrong and I can tell there is butter on the broccoli and we have to send it back. I hate assuming the worst when we eat out thinking there is a chance she will wind up needing Benadryl. I hate that at Pre-k I can’t always make my daughters snack identical to all the other kids and she has to feel different (not that she seems to care yet but I know one day she will and I will have to dry her tears). I hate that when we go to play dates I have to be the weird mom requesting strangers half bathe their children after eating a snack. I hate that lots of people don’t get it and just think we’re weird and picky. I hate that I went against my mom instinct on a “may contain milk” label tonight and she reacted and now she can’t have the dessert we made together that she was so excited about and had to have Benadryl instead (Not worry I did my best to make it up to her with allergen free ice cream but it was still so sad). I hate that I won’t sleep well tonight and may feel the need to put her in our bed because what if the reaction comes back. I HATE food allergies with everything I have.

BUT I LOVE my daughter more than life itself and I would do absolutely anything to make sure she gets to feel as normal as she can and stay healthy. I will stay awake all night and watch her breathe if that’s what it takes to be sure I’m keeping her safe. When she wants a dessert or a food she sees on one of the baking videos she loves to watch so much, you bet I will research for hours if that’s what it takes until I can make something as close as humanly possible to what she wanted to make or have and we will make it. (She may just grow up to be the best dang egg, dairy, nut, and avocado free chef there ever was! Look out for her restaurant “Pickles” in about 18 years or so haha) its so hard being a mom of a child with food allergies. Unless you live it you just don’t really understand it. Allergies are very much an invisible problem… until they aren’t and your kid is covered in hives and scratching like crazy or even worse struggling to breathe. I just needed to vent today. Tomorrow I will put on my big girl pants again and I will redo the special dessert with 100% guaranteed safe chocolate that doesn’t have a “may contain” disclaimer and all will be right with the world, even if its just for a few minutes wile I get to watch my daughter enjoy her dessert without fear of a reaction.

~Stephanie B

****Stephanie is a 26 year old mom to a 4 year old who has multiple food allergies. It used to be 12+ but they’re down to 6 (and may get to challenge out of two). It’s been hard but they’ve made it work. Stephanie also have allergies to fish and Brazil nuts so she knew a little bit about being careful, but it’s hard having some of the main things they used to eat be dangerous now.

Apologies and thank yous!

To the parent with the perfectly healthy child, to the parent whose child does not have food allergies, to the parent who doesn’t watch your child like a hawk before, during, and after meals, to the parent who does not have to inconvenience others because of your child’s issues:

 APOLOGY

I am sorry that my child’s medical needs inconvenience you.  I am sorry that you are limited in your choices for your child’s lunch.  I am sorry that our school constantly sends out reminders about which foods can and cannot be brought to school.  I am sorry that you are sometimes late for work due to the long lines at drop-off in the morning due to the school-enforced rule that everyone wash their hands.  And I’m sorry that I can often sound harsh and repetitive when talking to you over and over about my child’s allergies, the dangers surrounding him daily, and my expectations of you as a fellow parent.  I know you are bombarded with demands from your life.  I know that you may have your own unknown issues going on.  I know life may be difficult for you because of other issues, and I’m sorry.

I will continue to be an advocate for my child, working to bring awareness to this issue in order to protect him and many others facing this scary issue; however, I promise to work on my delivery.  I promise to respect your feelings and come at you in a better way than my renowned attack-dog-like method.  I ask for your respect and understanding as well and hope that we can find a way to collaborate and find a solution that works for everyone.

THANK YOU

Thank you for checking in on me after my son’s hive breakout.  Thank you for the prayers sent our way each day.  Thank you for your quick actions when he reacts while in your care.  Thank you for calling/texting to ask what you can fix or bring to a party or class event.  Thank you for noticing the difficulties that come with having a child with food allergies even though your child does not.  Thank you for teaching your child kindness and respect when dealing with my child’s allergy.

While there are many out there who complain and criticize our situation, you are there, supporting us, reminding us that there are still kind people in the world.  You encourage us not to bubble our child up and never let him out of the house, out of our sight.  You make my children and me feel welcome in your home. You give me hope for our lives.  I know because of people like you we can survive food allergies, cope with them, and hopefully one day over come them.

~Lacey

Easy allergy-free (top 8 allergens) cupcakes

For almost two years we have discovered that our 3 year-old, DR has developed new and increasingly difficult-to-avoid food allergies.  His first was eggs, so I had to learn to bake a lot the foods that we once could purchase pre-made from the stores.  The second was peanuts, which limited us further in items we could bake with that were not processed with peanuts.  The third and most recent, milk, sent us reeling again.  It’s only been 6 days, but my research and experimentation led me to the most amazing and easy cupcake recipe that is completely free of the top 8 allergens.

While all I wanted to do this weekend was keep DR next to me and hover over him while he ate, I knew it wasn’t possible.  As 3 year olds go, he’s very independent and active.  He hates for me to tell him what to eat, and he most definitely does not like to be confined to our house when he’s done nothing wrong.  So when it came to a family get together on Monday for his cousin’s first birthday I had to make a plan.  There were no bakeries in the area that could make dairy, egg, and peanut free cupcakes on short notice (not that I have the ability to trust anyone to do that right now).  So I half-heartedly started my research expecting to have to go out hunting for weird ingredients like xantham gum to make somewhat decent cupcakes.  However, in all of my research I found an amazingly easy combination of ingredients with the only “weird” one being vinegar.  The cupcakes turned out moist and springy like you want and the frosting was easy to make and apply.

So here is the ahhh-mazing recipe:

Cake:

Ingredients

• 1 cup sugar
• 2 cups coconut* flour
• 1 tsp baking powder
• 1 tsp baking soda
• 1/2 tsp salt
• 1/2 cup Earth Balance vegan soy-free baking sticks melted
• 1 cup coconut* milk
• 2 Tbsp vanilla
• 1 Tbsp vinegar

Directions

1. Preheat oven to 350.
2. In one bowl whisk together sugar, coconut* flour, baking powder, baking soda, and salt.  Set aside.
3. In a second bowl whisk together butter, coconut* milk, vanilla, and vinegar.
4. Pour the second bowl contents into the first bowl and mix until just combined.
5. Line a cupcake pan with cupcake liners. Fill the liners two-thirds full.
6. Bake in oven 20-25 minutes.
7. Cool completely.
8. Frost as desired.

Frosting:

Ingredients

• 1/2 cup Earth Balance vegan soy-free baking sticks  softened/room temperature
• 3 & 1/2 cup powdered sugar
• 1 tsp vanilla extract
• 2 Tbsp coconut* milk

Directions

1. Using mixer, beat butter until light and airy.
2. With the mixer on low, add the powdered sugar, vanilla, and coconut* milk and mix until smooth.
3. Beat on high for another 2 minutes until light and fluffy.

 

*While coconut does grow on trees it is not typically listed as a tree nut.  It is considered a botanical nut and placed in a fruit category.

~Lacey

 

There’s something itchy going on…. – Part 2

As you may recall in my previous post The beginning: a very good place to start – part 1, DR had developed a little rash that we were not concerned about.  That quickly changed.

We got home on Monday, and his rash continued to worsen.  We had seen this many times before, and from our experience his eczema had just been triggered. We followed our eczema medication protocol Monday night, and when he woke up Tuesday it seemed to be resolving.  That is until his daycare called me Tuesday afternoon.  He had woken up from nap-time red, itchy, and covered in hives.  I called my sister-in-law and she picked up his prescription antihistamine and took it to daycare to give him.   His hives started to go away.  We continued medicating him until Wednesday afternoon when his hives completely disappeared.  Knowing too well how his eczema flares after a reaction, we continued to treat his eczema.

Relieved that he was better, we looked for the source of the hives.  After finding no known exposure to or ingestion of eggs and peanuts, we attributed his reaction to a possible contact reaction.  That was until the same thing happened again on Sunday, the next Tuesday, Wednesday, and Thursday.   Each reaction was during a different time of day, at a different location, sometimes before a meal, sometimes after.  His hives also started in different areas each time.  We were baffled and would treat it like we were taught, constantly terrified he would have more serious symptoms.

During that we week we called our pediatrician and our allergist’s offices trying to get him checked out.  Our allergist was on vacation and we were scheduled to see her 2 weeks later on August 5th.  Our pediatrician was also on vacation, and we could only get in to see the nurse practitioner at the end of the week.   After his 4th hive outbreak and what felt like hundreds of calls from me, the allergist’s office said they could get us in with another doctor that Thursday.

We were hopeful for some answers and relief, but we could have never predicted what would happen next.

~Lacey

The beginning: a very good place to start – part 1

It has been a while since I’ve had the opportunity to blog.  I sit down at the computer when I have a few minutes and I start to type, but I haven’t been able to make sense of the past couple of months. So I’m going to break it down into several parts to better explain and, hopefully, understand and come to terms with it myself.

My three year old, DR, has been diagnosed with both egg and peanuts allergies.  He also has some pretty severe eczema.  However, over the past year we have worked to maintain a healthy and safe environment for him, so his skin was clearing up and he hadn’t had a reaction in months.  We were going out more, had found some great sitters who understood his needs, and our daycare was on board and on top of all of his food intake while he was in their care.  We were feeling pretty good about our allergy-restricted life.

The second weekend of July, I took a trip with DR and his one-year-old brother JN from Savannah, GA to Burnsville, NC.  Because of other medical issues, it had been months since we had seen my family, and that weekend was much needed.  We enjoyed the fresh mountain air, took a dip in a local river, played outside in the breezy summer heat, and ate to our hearts content of my grandmothers amazing food.

We stuck to our food guidelines the entire time, even when my grandpa made himself a peanut butter sandwich.  He is on a diet, so peanut butter is one of the few nutritionally valuable items he can eat.  Because of this, his contact with DR was limited for about 8 hours after the sandwich, all surfaces were cleaned several times, and he ate it outside in an area where DR would/could not go.  The plate and other utensils were disposed of in a trash can outside and isolated from the rest of the house. This was two days before we left, and all seemed fine.  I had prepared for instances like this, and we came through it without any issue.

As we got ready to leave on Monday we noticed DR had a small rash.  We assumed that it was the difference in weather and the fact that he had been in the river the evening before.  Little did we know that the rash was just the tip of the iceberg and far from over.

From that moment on the next 4 weeks would include 5 scary hives outbreaks, an anaphylactic reaction, an ambulance ride and hospital stay, a unexpected but necessary allergist change, a new allergy diagnosis, and a potentially delightful surprise.

~Lacey