Allergic to the common cold?!?!- Part 3

In my last post (There’s something itchy going on…. – Part 2) about my son, DR’s mysterious hive reactions, we had finally got him an appointment to see someone at his allergist’s office.  It was Thursday, July 21st.  His appointment was later in the day, so I spent the morning trying to treat DR’s fourth outbreak of hives in that 10-day period, monitor for other signs of a serious reaction, and manage his paradoxical  side effects from the antihistamines I had given him.

Doctor appointments are no fun unless you dress as a superhero.

By the time we got to the allergist’s office that morning he only had hives left on his legs.  We were brought back to a room quickly.  Within 5 minutes, in walked who I thought was the other doctor in the practice.  (Quick side noted:  days later I found out that this man was a nurse practitioner at the practice.  I normally do not have preference of being seen by an nurse practitioner or physician’s assistant, but with this particular office, I have heard some awful things about this nurse practitioner.  So when I had made the appointment, I had asked not to be seen by him, and was told we would be seen by the other doctor.) He began asking questions, not about his reactions, but about whether he had been exposed to a cold.  We did have our share of the common cold spread throughout our house, but that had been almost a month before.  I then tried to turn the topic back on our current issue of hives.  I told him everything that had happened those 10 days before the appointment.  I showed him pictures.  Unfortunately, he was so focused on this idea that my son was just having a reaction to the common cold, that he didn’t even do a full work-up.  We left with the diagnosis of a viral reaction, and directions to give him tylenol or ibuprofen if he developed a fever.  I was very confused, and friends, family, and school officials could not believe it.

Since it was Thursday, we had dinner at my mother-in-law’s house like we do every week.  I had given DR another dose of his antihistamine.  As usual, the kids would run around the house and play with the grandparents after dinner.  Then it happened, minutes after eating dinner, for the fifth time in less than two weeks, DR broke out in hives.  This time it covered his entire body.  As I sat him down to examine the hives, something new happened:  he started coughing, couldn’t catch his breath.  As his grandmother try to soothe him with water, I grabbed his Epipen and called our pediatrician’s office.  The nurse-on-call advised me to administer the Epipen and called 911.  So for the first time ever, I held my child down and jabbed the auto-injector into his leg.  He squealed and looked at me as though I had betrayed him.

The next leg of our anaphylactic journey would bring even more questions as we treated what we could, fought for a diagnosis, and made new discoveries in the crazy world of food allergies.

~Lacey

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

 

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

The 5 stages of food allergy grief: a child’s emotional reaction

DR was originally diagnosed with an egg allergy at 18 months old, at which time it was easier to limit his exposure as he only ate what we gave him.  A couple months after his 2nd birthday, we discovered his peanut allergy.  It was a little more difficult to avoid this allergen as peanut butter was one of his favorite foods.  We quickly replaced all of the peanut products in our house and finally found a suitable alternative to peanut butter.  Now that he is older and is learning to eat things for pleasure/taste he starting to go through his own stages of food allergy grief, making the exposure more difficult to avoid.  As a parent, only able to watch from the sidelines, his reactions can either add to the stress or help with the overall learning process.

Denial:  To keep him from feeling left out or isolated from other children, we tried to find as many alternatives to normal foods that looked or tasted similar.  For a while, we thought we had it made.  However, in the instances that we cannot predict when food will be brought to school for surprise parties, special events, or impromptu outings, it is difficult to have equivalent alternatives.  For example, one day last week, a child in DR’s class had a birthday.  Up to this point, no parents had brought in treats for other birthdays.  On this particular day, the other child’s parents decided to bring in special cookies.  Of course DR could not have one.  The cookies looked just like allergy-free cookies I had made before, so he could not understand why he couldn’t have them.  This led to a meltdown.  At 3 years old, he cannot understand why some items have eggs and others do not, and while I try to explain it to him, I am at a loss right now.

Anger:  Before his first reaction to peanuts I would allow DR to pick out a candy treat when he was good in the grocery store.  Due to having to read all ingredients for his egg allergy, grocery trips could be 2-3 hours and his compliance was key.  After his peanut allergy was discovered, this reward system disappeared.  Even though I offered him other rewards like stickers or books, he still wanted his candy.  One day, as we were checking out after a long grocery trip, he grabbed some candy off the shelf (of course it had to be Reese Cups), and tried to open them with his teeth.  As I wrestled them away from him, he was screaming and crying angrily at me, “I WANT THEM!!!”  I tried to explain from the store to the car, on the ride home, and even after carrying all the groceries into our kitchen, but his poor little 2 year old mind could not understand why this had changed.  He was used to not getting his candy when he misbehaved, but he had been perfect during this trip (except for the angry tantrum).  Since then, I try to avoid food as a reward, giving him other options at the beginning of our trips, so food is not an option in the end. 

Bargaining:  Bargaining has a very literal meaning here.  Despite all of my preparation,  extra snacks, and explanations to DR and others, I still have to keep a close eye on DR as he eats.  I have caught him in many instances swapping food with other kids, sharing his special snacks.  When he realizes he is caught, he claims that he is sharing. I have to start my explanations all over again.  Then there are the times he sneaks foods that he KNOWS he cannot have.   A couple weeks ago, we caught him eating his dad, Justin’s donuts.  As we panicked looking for the first sign of a reaction, DR kept saying “I fine.  I not itchy.”  Unfortunately, within minutes the rash started, and again we had to explain the dangers to him. 

Depression:  Halloween was a rough time for us this past year. I was extremely vigilant in keeping him away from candies.  I purchased allergy-free snacks to switch out when he went trick-or-treating.  I donated allergy-free options to local trunk-or-treats.  I literally prepared a month in advanced for this event.  In our town, Halloween and Fall festivals spanned several weeks, so we had a good pattern going.  Unfortunately, by the time Halloween actually arrived, DR was so burnt out from all of our special treats, activities, and precautions that he didn’t want to go trick-or-treating.  It was then that I learned that there should be limits to how concerned or scared we adults appear to children with allergies.  He was beginning to mimic my depression, and this was what I had been hoping to avoid

Acceptance:  I am amazed at how quickly DR can grasp this concept.  I think because his allergies developed at such a young age, we are avoiding some of the worse emotional reactions.  I love that at 3 years old he asks if food that is presented to him has eggs or peanuts.  And most of the time he loves his special foods.  I wish that my own acceptance of the issue could come as easily.

I am very much aware that as he ages DR will repeat the cycle of food-allergy grief, but I feel hopeful that he remain the spunky, wild, vivacious boy that I love.

~Lacey

 

 

 

All it takes is one

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