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

 

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

Beach: a fun vacation getaway or food allergy mom’s worse nightmare?

Going to the beach, spending a day in the sun, waves and the sand, and digging for sea shells is typically a fun time even for those who live there.  My son, DR, loves the sand.  Living in Savannah, Ga, we are 20 minutes from the beautiful beach of Tybee Island.  On family days, we drive down to allow DR the freedom of running through the sand, splashing in the waves, and looking for buried treasure.  One on trip he even found this perfectly preserved dry seahorse.

Unfortunately, one trip to the beach ended all of our fun.  During this last trip he was digging through the sand and came across a mound of peanut shells.  My heart fell into my stomach.  We snatched him up and left immediately.  I have seen hundreds of people eating peanuts at the beach, and never thought anything of it.  But now I realized that it is a very common occurrence to just throw the empty shells on the sand.

Peanuts are a natural product, and the shells will eventually deteriorate over time.  For a while after this beach trip, I assumed that this was not considered littering since it was a natural item; however, the fact that we could not visit the beach because of this  bothered me.  So I recently reached out to the city council of Tybee Island, just suggesting that they post signs asking people to be thoughtful of those with food allergies and not just throw their food items on the ground.  The council’s response was quick and enlightening:  Peanut shells ARE actually considered a form of littering and warrants a ticket if caught.

I did some online-digging of Tybee Island policies, and nowhere did I find anything actually saying this is a form of littering.  The most detailed description of Tybee Island Beach Rules and Regulations* comes from Savannah.com*.  It does list food and fruit peelings as litter items which should make people think of peanuts as trash and litter, but like I pointed out before, even as a mother to a child with a severe peanut allergy I thought it was perfectly common and acceptable to throw empty peanut shells on the beach.

So what needs to be done to correct this false mindset?  I believe Tybee Island City Council is working towards a solution, but I think us moms of children with food allergies need to help.  Not just in this instant, any opportunity that presents itself to be an educator and advocate for the food allergy cause.  If we want to stop living in fear of food allergies, we need to take a stand and put into place policies and structures in our communities to make life safer and fun for everyone.

As I work with Tybee Island City Council toward a solution that benefits all I will post updates.

~Lacey

*Permission granted to link to Savannah.com

10 phrases allergy moms “love” to hear

1. How allergic is your child?  When I tell someone my child has a food allergy, I’m telling them so that my child can avoid the allergen.  It doesn’t matter “how” allergic he is.  He doesn’t need the food, and we don’t need the agony of an allergic reaction.
2. Is he really allergic or do you just not want him to have sweets? Of course I don’t want to constantly shove sweets down my child’s throat, but just because he can’t have certain foods does not mean I don’t let him have sweets.  Besides, why would you ask a mother (whether or not she has a child with food allergies) if you can give her child sweets?  Why can’t you offer my child an apple or even better a non-food item like stickers?
3. I feel bad that he can’t have the same food as other kids.  I don’t want him to feel left out.  Most moms of children with food allergies come prepared with alternative options for their children.  While the children may feel a little left out from not getting to eat certain foods it is far better than the alternative of them eating the foods and having a reaction.
4. Ugh…my life is so inconvenienced by your child’s food allergy.  Why do daycares, schools, airplanes and public buildings have to be peanut free?  First, if you seriously can’t wait until you get home to eat your peanut items, then maybe you have a bit of an issue?  Second, the severity of some allergies like peanuts differ from person to person.  Some people react just by touching an item that someone who had peanuts earlier touched.  It’s like with the flu.  If you have the flu virus you shouldn’t be bringing it out into public where it can hurt others.  Just keep your peanuts and your flu at home and to yourself.
5. How long has it been since your child has tried this food? Maybe he’s built up a tolerance.  Yes, some people may grow out of their food allergies, but some of them may get worse.  Currently, there is no way to know either way.   There are some research efforts underway to see if there is a cure for food allergies.  No, we will not test his tolerance right now in a non-medical environment without his doctor’s consent just because you want to see if he reacts.  I can tell you that I am probably losing my tolerance for you.
6. You must have eaten too much of that food during your pregnancy or while you were breastfeeding! You must be ignorant. Thank you for blaming me for my child’s medical condition though. Bless your heart. Do your own research and know that we blame ourselves enough for our children’s reactions without others trying to blame us too.
7. Giving them a little bite won’t hurt. Right, and neither will letting them hold a rattlesnake. To allergy moms those two things are equal. Both could kill our child. Let me say that again to make it clear: ONE BITE COULD KILL MY CHILD. I’m not willing to take that chance. You shouldn’t be either. Killing people is frowned upon last time I checked.
8. Oh, they’ll grow out of it. We actually want this. We desperately want our child to grow out of their food allergies. For them and for us. Unfortunately we don’t know if that will happen. Neither does my child’s allergist. I’m so glad you know though.
9. It was processed in a plant/on a conveyor belt/on a counter top with the allergen, but it doesn’t have the allergen in it.  It should be safe. If it wasn’t potentially dangerous, then why do the products have to tell you they were processed near the allergen?  What if your favorite food item said processed by someone who had the flu or TB?  Would you feel comfortable chancing contamination?
10. This one we will never hear said to our face. We’ve heard others say it about other allergy moms when they don’t realize we are listening or don’t realize we are also allergy moms. They’re just doing it for attention, I doubt their child even HAS a food allergy. Don’t be this person. This person is not a nice person to be. Please know that we are not seeking attention. Most of us HATE having to ask what ingredients are in everything when we are at a restaurant, a person’s house, on vacation, etc. I don’t like inconveniencing people. I hate it. I’m a southern girl to my core and I love making people feel at ease. I’m way out of my comfort zone when I have to seek people out to ask questions. I will do it for my child’s safety EVERY SINGLE TIME no matter how uncomfortable it makes me. I can assure you if I could take it away from them I would in a heartbeat.

This post is not intended for people who genuinely care about our children’s safety. If you are asking us questions that are intended to really help our child or if you are wanting to know details so that you can make them or give them a safe treat we welcome that. We always know your intentions as soon as you speak though. We can tell when you are a caring person and when you’re just trying to be a busybody or a tush.

~Hope & Lacey~

 

“MH” Part II: NICU

The first 24 hours after MH was born was miserable. I felt like I couldn’t breathe I was hurting so bad. Not from the pain of just having gone through 18 1/2 hours of labor or the fact that I had been cut open from hip to hip, but because I didn’t have my baby in my arms. My heart felt like it had been ripped out. I’m the mom who doesn’t let anyone take my babies out of the room without me or my husband going with them during our hospital stay after our babies are born. Now, I was having to trust strangers, very amazing and capable strangers, to care for my fighting baby girl. My husband was the first to hold our sweet baby. He went up to the NICU as often as he could while I wasn’t able to. I was a very sick mess for the first 24 hours after her birth. I finally made it up to the NICU to hold her and she was stable but fighting. She had transitioned from a c-pap to regular oxygen but still wasn’t doing the best. I honestly can’t remember all of the terms they used to describe what all was wrong, I just knew she was fighting. After my first visit with her they gave me fluids and a blood transfusion then unhooked me from my IV. I was able to shower, change clothes and blow dry my hair. I felt like a completely new person. During my second visit with her I was able to stay a lot longer and I was able to do kangaroo care with her. It was good for the both of us. She was beautiful. She had a million wires and IV’s hooked to her but she was beautiful. Each time I had to leave was gut wrenching. J went up there very often and I went as often as possible. My sole mission at that point was to provide as much of my milk to her as possible. I became a pumping machine! We got to feed her for the first time when she was a little over two days old. Tiny little drops through a syringe. 1cc of liquid gold. She slowly improved each day and on the Sunday after the Thursday that she was born I was discharged. Those few weeks before, during and after her birth were filled with days that seemed to be the worse days of my life.
I’d do it all over in a heartbeat to have my sweet girl.
Leaving her was hard. One of the hardest moments of my life. I was thrilled to see my kiddos at home though!! I had missed them so so bad!!! That Monday was bittersweet and miserable. I had desperately missed my kids so I was happy to spend time with them but I was honestly really worried and stressed because I couldn’t take care of MH. My parents came to sit with our kids so that we could go visit her around 3pm. We live an hour away from the hospital. That morning when we had called to check on her the nurses told us she was stable but had not improved. I had prayed all. day. long.

Prayer is a powerful thing.
When we got to her on the main NICU floor we were met by a nurse who asked if we were ready to take her to a transition room!!! We had NO IDEA that she was doing so well!!! Her oxygen was gone, she was down to only one IV line and she was very stable! After only a second she was being wheeled into her own room and I was told that either I or my husband could stay with her 24 hours a day if we chose to!!
I was staying. No one could have pulled me away. My husband was instantaneous in his decision. He knew I needed to stay with her, I needed it with every fiber of my being. It was the best news I could have ever heard.

We left for an hour to go get a few things at a local store because I hadn’t packed anything. I was planning on staying with her as long as she had to be there and I needed necessities and comfortable clothes to keep myself clean, comfortable and keep my milk supply strong for her. A couple of bags of toiletries, food, yoga pants, t-shirts and a giant mason jar water bottle later I was set. When we got back J was able to feed her her very first bottle!! He stayed as long as he could and then left to care for our other sweet kiddos. Then, it was just Mommy and MH. That was the first time I had been able to be alone with my sweet tiny girl.

It. Was. Blissful.

~Hope

“MH” Part I: Birth Story

Throughout my four pregnancies before MH I never had any serious issues. My blood pressure was always good, so was everything else. I always had amazingly easy deliveries even through a couple of small complications during the birth of two of my sons. When I went in for a routine checkup at 19 weeks during my pregnancy with MH my blood pressure was very high. My doctor admitted me to the hospital for an overnight observation to check for more signs of pre-eclampsia. All of my tests came back fine, my blood pressure was normal for the full 24 hours after and we found out that day that we were having a girl! I went home with high hopes and thankful that it seemed to be just my nerves that caused the issue. Everything was fine for the next few weeks. Then at another routine appointment at 36 weeks my blood pressure spiked again and I was admitted again. This time the tests weren’t great. I had pre-eclampsia. I had to stay in the hospital under observation. My amazing husband stayed by my side the entire time. Our kiddos are very blessed to have awesome grandparents and close family friends that they stayed with during this time. I was induced at 37 weeks. The day before the ultrasound tech told me that MH should be perfectly healthy and she measured over 6lbs. My labor was 18 1/2 hours long. Sometime during the morning I remember feeling a huge movement that felt like she flipped but I didn’t give it much thought in the moment. When I finally reached 10cm my water still hadn’t broke. As the doctors and nurse checked my progress my nurse noticed that she wasn’t feeling the baby’s head, she was feeling the umbilical cord. I was immediately rushed to surgery for an emergency c-section. The big flip I felt was just that. MH was breach and I had a prolapsed cord. I lost a lot of blood during the procedure and felt myself going in and out the whole time. Once they got her out something was very wrong. I couldn’t her her crying and they didn’t immediately let me see her like they normally do. I honestly was so out of sorts that I didn’t fully understand everything that was going on. I became very sick and my blood pressure wouldn’t stabilize. My husband came to my side and I remember my anesthesiologist telling him to stay because he was making me stable. He is my rock. I finally heard MH crying and I knew there were a lot of people in the room. I didn’t know what was wrong. In recovery J, my husband, told me that MH had to be taken to the NICU. She was very small and had breathing problems among other medical issues. I was able to see her for a minute after recovery but I didn’t get to hold her. I know this isn’t food allergy related but it is MH related. To tell her story without explaining everything she went through, fought through, before her diagnosis would not give her the credit she deserves. She is my fighter.

~Hope

Just when you think you’re winning

DR’s egg allergy was diagnosed in October of 2014.  While we were devastated, we were also motivated to cut out all egg products immediately.  It was very much a learning process as so many products we do not think about contain eggs.

About 3 weeks into our egg-free diet, we had a scary reaction.  I was baffled, as I was sure he did not have any egg products.  I called my husband, Justin on the way to the pediatrician’s office to ask if he knew of anything they could have added to chicken salad that would cause this reaction.  There was a pause on the other end, and then Justin calmly said “Well, mayonnaise is made out of eggs.  Everyone knows that.”  No, not everyone knows that, and even those who do, don’t always think of it as an egg product.  I had never made mayonnaise in my life, and I hardly ever used it except in potato, tuna, and chicken salads.  The day before I had fed him tuna salad.  Couple that with the school lunch of chicken salad, and his poor immune system was under attack.

For weeks I beat myself up over this incident, but I learned to be even more vigilant.  We scoured every ingredient list we could find.  We researched every food item that could possibly contain eggs.  We were prepared for any food question.  We were prepared!

Or so we thought.  When you think of food allergies, most people only think of food products.  We were in that mindset, until one day when I went to pick up DR from school and he was covered in hives.  We looked over the food list that day, and as we were doing so, a new teacher from one of the older kid classes approached me.  During recess, one of her students had passed pieces of chalk to DR.  As a one year old, his initial thought was to put it in his mouth.  The teachers caught him half-way through the piece of chalk, and washed it out of his mouth.  No one thought to check the ingredients, though, until he started breaking out.  Believe it or not, the non-toxic chalk being used in the school was made out of eggs.  This prompted us to look at other non-food objects like crayons.

Another random incident with packing peanuts, brought us to the realization that these bio-degradable items could also be made from eggs.  As the list continues to grow, I become less comfortable with the world around us.   I have become a hover-mom, never letting him out of my site, constantly checking to see if he’s chewing on something.  I feel that even with all our hard work, we will never win.

~Lacey