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.

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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.

2~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:

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 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.

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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.

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~Lacey

The Depth of Food Allergies

As with many issues that people may not deal with, food allergies can be viewed as a simple diagnosis and treatment.  For those of us who have children with food allergies, it is far from simple.  I repeat, it is not simple.  There are many aspects to consider:  testing for all possible allergens (food and environmental), changing diets, changing routines, educating others, constant preparation, hawk-like observation of all events and outings, managing doctor’s appointments and medication costs…..The list goes on.  Even though we’ve been dealing with food allergies for almost two years, I know I cannot finish the list as everyday presents a new obstacle to add to the depth of the issue.

As an example, I suggest you take note of the fact that the two mothers running this blog have not had time to update lately.  The reason being, so many issues going on in life that we barely have time to hold ourselves together, let alone share it with the world.  But today, I need to release some of the anxiety smothering me.  Hope knows what I mean, as do many food allergy moms and dads (and parents of children with other medical issues).

 

My most recent issue started last Monday as we were traveling from NC to GA.  We had a relaxing and much needed weekend visit with my family.  As always, I kept a close eye on my son, DR’s diet.  Since my grandparents do not have sunbutter (our favorite peanut butter alternative), DR ate almond butter and jelly sandwiches.  My grandpa who is on a special diet still had to eat some peanut butter sandwiches during the day, but we took big precautions, and DR was able to avoid any contact.

Twelve hours after we returned home, DR had a small rash developing on his legs and belly.  We rubbed him down with his topical steroids like normal, and in the morning he was looking much better.  Then it happened.  Daycare called and he was covered head-to-foot in hives.  We followed our protocol for this type of reaction by dosing him with oral antihistamines and topical steroids, covering him in clothing to keep him from clawing his skin off, and watching him like a hawk praying for the best, but expecting the worst.  The next morning he seemed better.  The next 9 days included a cruel repeat of the events three more times.

The second event was after dinner at my mother-in-law’s house.  This time it started on his legs and arms.  He screamed in pain at the itching in his legs.  We repeated our protocol, and I slept (laid awake and stared at him) in bed with him that night.  When our power went out due to thunderstorms, I just surrounded the bed in flashlights. As I laid awake, I went over the possible triggers.  He was nowhere near peanuts or eggs, but he did have exposure at least two times to almonds.  Maybe that was the cause.

The third event occurred two days later at daycare right after naptime.  This time it started in his arms.  He had only eaten the food we had supplied for him, food that he had eaten before.  My sister-in-law drove to daycare and gave him his prescription meds.  My husband picked him up early from daycare, and by the time I got home at 6:30, he was out.  This boy, who normally  only sleeps for 8 to 9 hours, was out until 7am this morning (minus a delirious 4am sleepwalking/talking event).  At this point, I had hoped that he was just experiencing a biphasic reaction from the second event.

Then came the fourth event today, just one day after the third.  He had not had lunch yet and his class had only been outside for 3 minutes.  He immediately started turning red and the hives appeared.  The daycare reacted by giving him the prescription meds (which are now in the directors desk) and calling me.

I know many people will read this and think, why doesn’t she call the doctor.  That is a story in itself.  He was already scheduled with his allergist sometime late-August.  At his first reaction, I called and asked to move the appointment up; unfortunately, his doctor is on vacation until the first week of August, and they couldn’t test for anything anyway until he has been free of antihistamines for a week.  So we scheduled him for August 5th.  After the second reaction I called, but nothing could be changed.  The day of the third reaction, I called his pediatrician’s office.  For some reason, all of the doctor’s are out of the office (is July doctor vacation month???) and they scheduled him an appointment with a Nurse Practitioner who told me she was uncomfortable seeing for him an issue like this and thought he should see an allergist (well, duh!).   So with his fourth reaction today, I called the allergist office and demanded he be seen by a different doctor.  We now have an appointment for tomorrow afternoon and wonder if they will be able to do anything to help him.

Throughout all of this, I also have to coordinate and care for everyday issues:  our 1 year old is teething, previous doctor bills are due, work schedules, vacation schedules, bosses who get mad for you changing the work schedule, family visits, household chores, other doctor appointments, meal planning, not crying in public when I see the daycare’s phone number, only to name a few.

And emotionally, I feel like I’m being buried further and further from a solution, from peace-of-mind, from sanity.  But I have to hide it, because if I break down, who will handle this?  My husband probably, but he’s currently dealing with same stressors and more.  So if you ever think that food allergy parents are overly-dramatic, overly-sensitive, or overly-complicate situations, first think about with which we deal.  Your judgement only adds to the depth of our problems, but your support (especially the emotional support) can help digs us out of the pits of despair.

~ Lacey

https://fromsouptonutsallergyfree.wordpress.com/2016/07/20/the-depth-of-food-allergies

All it takes is one

From Soup to Nuts Allergy Free

One call, one email, one concerned parent, that’s all it takes to affect change for those with food allergies.

About a month ago, I sent an email in to the Tybee Island City Council expressing my concern for the fact that people carelessly discard food items like peanut shells on the beach.  I never expected the quick responses I have received.

Despite the fact that food items like peanut shells are biodegradable, discarding them in the sand is still considered litter.  By pointing out how dangerous food items can be for those with food allergies, we have given the local police force a new angle when approaching beach-goers who litter.

To get the word out, Tybee Island City Council has suggested developing a PSA to be aired on their government television channel and possibly other local news channels.  This is the exciting piece.  The daunting, more nerve-wrecking piece is the fact that we will probably need to raise funds in order to make this a reality.  We are talking about $5000.

So this mom has started looking at fundraising ideas, reaching out to other local moms, and is hoping that I can turn the concerns of one mom into the action of many moms.  Stay tuned for our  journey.

~Lacey

 

The sister-hood of mother-hood

As we have repeated throughout several of our posts, living with a food allergy is mentally and emotionally trying, difficult, and draining.   The main point of this blog, though, is to connect and create companionship for any mother having to deal with a child’s food allergy.

Meal-planning, grocery-shopping, budgeting are all chores that some adult member of the household must do, so that the family can eat.  These are often not events that you think to invite your friends along, especially if you are a food-allergy mom.  This part of dealing with food allergies can be very time consuming and very lonely.

It doesn’t have to be.  All those hours you pour over recipes and meal plans to come up with just one weeks worth of ideas, those 3+ hours spent in the grocery store scanning every ingredient list two or three times, and the countless recalculations of your budget to ensure you can afford all the peanut, tree nut, egg, milk, soy, and corn-free alternatives without having to take out a second mortgage, do not have to be done alone.  In fact, if we moms come together and share our meal plans, recipes, grocery lists, and budgeting saving secrets, then life with food allergies would be much more bearable.

If it wasn’t for my rapport with Hope – our text message successes when we find a new budget-friendly alternative, pinterest recipe, or just a kind stranger with sympathy for our struggle –  then I’m not sure how I could make it. The countless support groups available to moms both in person and online are amazing and something to be celebrated, especially in a world that is so accessible yet isolating in social media.

The issue of food allergies should never make anyone feel alone.  It is such a common occurrence nowadays, that everyone should have someone to talk to.  If you ever feel like you are alone, then please, know you’re not.  Hope and I are here for you, if no one else is. We would love the opportunity to add you to our umbrella of moms.  After all, mother-hood is only an extension of the sister-hood of life.

~Lacey