A Skin Test Follow-Up

A Skin Test Follow-Up

 

A little over a week ago Shaun had his summer visit to his allergist. At this point, we typically check-in 4 times a year (not including food challenges or sick visits) with the intention of looking at his allergies, asthma and eczema condition. This allows us to make any changes to his care plan that are needed and keep him up to date with challenges and therapies that would open up Shaun’s diet. 

I spent the afternoon before his appointment gathering my thoughts, paperwork, and questions. I am aware that this preparation** takes extra time, time that we could use for 1,000 other things we need to be doing. (I left our family cottage early to come home and make sure things were in order for our time with Dr. H) But experience is an excellent teacher, and I know how critical it is to show up prepared for these appointments!  

 

** Prep work is a theme of allergy life! Food prep, planning meals and grocery shopping, extra vacation prep, food product research, prep a separate lunch for a family outing, prep for the beach or the baseball game … I could go on. Prep work is another insurance policy, paid for with upfront time, that makes allergy life manageable and ultimately safer!

 

At the beginning of the appointment, a medical assistant always takes Shaun’s height and weight. And I am excited to announce that Shaun officially weighs 30lbs!!! I know, 30 lbs, it seems silly but for half of his little life, we have spent countless hours focusing and stressing over his growth. He was born small but shortly after his eczema started we began to notice he had fallen off his growth curve. Shaun’s pediatrician and allergist referred us to the pediatric GI & nutrition practice leading us on a 3-year journey that I will share with you another time. But I tell you all this because 30lbs is a big win for us, in fact, we might even throw a party! 

With the appointment off to a great start, we dove into the state of Shaun’s asthma and eczema. Dr. H was happy to see and hear that it’s well managed currently and recommend that we just continue our current care plan. I’m not going to lie, it took a long time to get to a place where the care plan didn’t change with every doctor visit but here we are, no changes to the care plan and it feels really good. 

Next up, allergies! Dr. H suggests we use the appointment to look at Shaun’s environmental allergies. It had been a while and given his struggle this past spring she wanted to have more recent data in his chart. So we agreed to do an environmental skin panel and would test his food allergies by blood work (adding his food allergies to the skin panel would have been a lot given the environmental panel required 24 skin pricks). 

 

 

This was the part of the appointment I was grateful to have John with me! Shaun is now old enough to know what was about to happen and he got incredibly upset. I held Shaun until they were ready to apply the skin test. Then I was able to pass him to John who could hold him tightly enough to give the staff a chance to administer the test. 

 

Is it hard to watch your child freak out and scream and squirm because they are upset by the skin test? 

 

Yes, it is horribly hard and frankly heartbreaking. 

 

But I am an adult. And I know that this test, although momentarily uncomfortable and upsetting (for him and me), will yield valuable information. Information that will help us as we continue to expand his world! 

So despite the screams forcing their way out of his little body, we move forward with the test. It is important. 

Once the test has been administered to his skin we do our best to comfort him as we wait the required 15 minutes for his body to react. A nigh-night (blankie/woobie/etc.), dum dum pop, a YouTube video about buoyancy and density (following up on some concepts we discussed while at the ocean) and he was calmer and we were ready for Dr. H to look at his skin. 

We lifted his shirt and I laughed a little … because sometimes in life it’s laugh or cry. 

 

An untrained eye could have looked at Shaun’s back and known that he is allergic to almost every environmental stimulus they tested him for. 

 

 

And even though I anticipated this result before we arrived for the appointment, there is something that sinks inside you when you see it painted in bright red and white splotches on your child back. 

 

Knowing this did give us the opportunity to discuss the possible benefits of allergy shots for Shaun and what that entails. So we will take the information given to us, by Dr. H, do more research and talk with Shaun about if this is something we want to start with him. This therapy is not comfortable short term (who wants to go get weekly shots?) but might provide him major relief long-term. 

We wrapped up our appointment by verifying the prescription refills he needs, getting hard copies of the necessary school forms for September and leaving with a lab order for blood work. 

Overall, it was a great appointment. We were able to cover everything we needed to discuss. We gathered updated information about Shaun’s current response to environmental allergies and we left with the forms and medications we need until we return in November. 

I’m so grateful for Dr. H and the staff at CTA&A. I know Shaun has the best care! And as an allergy mom, I can’t ask for anything more. 

 

To great doctors, 

 

~ LC 

 

P.S. – (Is a ps a thing in a blog?) Shaun and I went this week to get his blood work done. The screams were worse than the skin test but we both survived. Nothing a game of mini-golf can’t fix! Results will be in soon, I will keep you posted! 

 

 

 

 

This post may contain affiliate links. Please read our disclosure for more info.

 

How to Meal Plan and Why It Matters!

How to Meal Plan and Why It Matters!

 

It’s 4:30 in the afternoon on my way home from work. I slow down for a red light and Shaun pipes up from the back, “mom what’s for dinner tonight?” 

 

Nothing is defrosted. 

 

I haven’t been shopping in at least a week and a half. 

And we are out of our allergy-friendly staples. 

 

Can you relate? 

 

Food allergies or not I feel like at some point we all struggle with staying ahead of the “what’s for dinner” question. Though having food allergies definitely complicates this problem. (I can’t just pick up a pizza on the way home and call it a day.) 

And although I am aware of a helpful solution I don’t always choose to take advantage of it …

 

The solution?! 

 

Meal Planning!!!! 

 

Here is how I look at it …

When I put the time and effort into making a weekly meal plan I save time & money, eliminate frustration and eat healthier! 

I save time trying to scrape something together for dinner at the last second. And instead, I can spend that time with my family!

I save money when I use a meal plan. I know what and how much food to buy each week. Thus spending less and wasting less. 

I eliminate the frustration of last-minute scrambling to make a meal that is Shaun safe and balanced in nutrition. Instead, I jump into the meal; often finding places for Shaun to help me cook! (When I don’t know what my plan is it is hard to let Shaun help with the cooking, which he loves and is a necessary skill for him to learn) 

We eat healthier because I have more whole foods in my kitchen! 

 

The upshot, meal planning for the win. 

 

So here is my method: 
  1. Block off time on your calendar to plan your meals before the start of each week.
  2. Keep all your favorite allergy-friendly recipes together. This makes it easy to reference them.
  3. Grab your blank weekly meal plan worksheet. 
  4. Start with the first column of the worksheet: menu.  Identify days you don’t need to cook or will eat leftovers (eating out, dinner at moms house, soccer practice) 
  5. Then for the days that remain pick from your recipes to complete your meals for the week. 
  6. Next, pull the recipes you have chosen for the week ahead and figure out what ingredients you need. Use the second column, shopping, to record what and how much you need. 
  7. Cut the columns apart, the menu goes on the frigid with the recipe cards for the week. And the shopping list goes with you … well … shopping. 

 

 

A few tips …
  • I fill out my worksheet on Saturday for the Monday ahead. (That’s why my meal plan page starts with Monday.) You can adjust this by starting with any day that works for you. 
  • I tend to cook extra servings for a meal. I like to have leftovers! Both for the purpose of eating the meal again (John takes leftovers for lunch) or in some cases to use the ingredients in a new dish. (ie. roasted chicken on Monday can be used in a chicken wrap on Wednesday). This type of efficiency is really helpful now that we live with food allergies. 
  • I print my meal plan worksheet a week ahead of the planning. I leave it on the kitchen counter so as we run out of something I can just put it into the shopping list. Then when Saturday rolls around I plan my meals and complete my shopping list. 
  • I do a combination of shopping in the store and online (Yeah for Instacart!!) but in both cases, I fill out my paper shopping list. It helps me stay organized; I have found that if I try to input my list right to the computer I always miss a key ingredient leaving me running out to the store. 

 

Right now, I only plan dinners and leave breakfast and lunch more open. I know what we like to have in the house and make sure it gets included on my shopping list if we are low on something. It works for my family. 

Having said that you can easily plan breakfasts and lunches on your menu sheet if you decide that is what works for you!

As with anything in life, I cycle in and out of meal planning but when I stick to it my week is much more enjoyable! 

So let’s start together, right now! 

Let’s put in the extra time upfront, save money, ease the stress of dinnertime and eat healthier!!  

 

Happy Planning! 

 

~ LC 

 

 

This post may contain affiliate links. Please read our disclosure for more info.

 

 

 

When Planning Your Beach Trip Still Falls Short

When Planning Your Beach Trip Still Falls Short

 

What’s that saying about “the best-laid plans”…?

 

As an allergy momma, I understand this sentiment intimately. 

Vigilance and planning make it so Shaun can have happy, healthy experiences out in the world. But you see sometimes even our best-laid plans (the ones based on trial and error, research and our care plan), fall short and end with some type of reaction. 

Last week, we shared some ideas about How to Enjoy a Beach Day with Food Allergies. It seemed like a timely blog post as we were headed to our family cottage to enjoy the beach for a few days. 

 

 

The day after our post went up, my mom (Shaun’s Mimi) and I began to plan and pack to take Shaun down to the shore for the afternoon. 

Shaun safe food …. Check
Medication and care plan … Check
Blue Lizard Sunscreen … Check
Sand chair, sand toys & umbrella … Check 
Long sleeve rash guard shirt … Check
Full coverage beach hat … Check 
Extra 100% cotton, clean, dry clothes … Check 

 

Finally, we have the car packed up and we head down to the beach. 

We Arrive. Unpack the car, off to the sand to scope out a spot that seems open, close enough to the water, but not too far from the bathrooms and that will allow for easy egress should we need to head out in a hurry. 

My mom and Shaun headed down to the water’s edge as I set up our little space. I put in the umbrella, got some towels set up and put our medications and food cooler in the shade. 

 

 

I walked down to the water …  and I took a nice deep breath of ocean air! I enjoyed the interaction between Shaun and Mimi as they waded a little deeper into the waves. Feeling grateful and peaceful I returned to our spot on the sand, settled into my chair and grabbed my book. 

 

Not even one page of reading and Shaun was standing in front of me shivering. Bouncing up and down at his knees just a little bit … he was clearly uncomfortable. I suggested he lay in the sun, on the towel, so he could warm up and dry off a bit. But he continued to bounce and tell me “momma I can’t lay down.” 

Finally, after a few minutes of frustrating back and forth about laying down to warm up, he asked to go to the potty. Off we went back up the sand toward the bathhouse, used the potty and then back to the sand we marched. 

Hopeful that Shaun was now content, I planned on picking my book back up while he spent some time building in the sand! 

 

Unfortunately, as soon as we arrived back at our spot on the beach Shaun started itching. For Shaun itching happens often so there was no need to panic or pack up. 

 

Me: “Hey buddy, what’s going on?’ (I try to keep my questions open-ended so I am not giving him words he will just repeat back to me) 
Shaun: “My knee pits itch” 
Me: “I see that … any other spots itchy?”
Shaun: “No” 

 

But I could see he had already started scratching around his waistband and his crotch … 

 

I decided we needed to take off his clothes to get a look at all his skin. Mimi and I help him get off his wet shirt and hold up a blanket as we take off his bathing suit (we are trying to teach him he can’t just be naked anywhere he wants … ahhhh parenthood)

The creases of his knees were red and puffy with hives but the rest of his body seemed okay. I wrapped him in the towel, sat in the shade with him lying across me while Mimi got us some ice packs from the cooler in an attempt to calm down his hives. 

 

 

For the next few minutes, I tried to settle him. He rolled this way and that. He squirmed. He began to itch his ears and eyes. So I stood him back up and opened the towel to look at him again … he had hives on his torso, behind his ears and in the creases of his thighs. So I scooped him up in the towel and quickly made my way to the bathhouse where they have freshwater showers. 

As soon as I turned the handle to rinse Shaun off he darted out of the water screaming “its ice-cold!!!”

 

Yes, it was time to go home … 

 

We had not even been there for 30 minutes. 

 

I knew with the way the hives were spreading that if we didn’t rinse him in freshwater and get his skin covered in clean dry clothes the hives were not going to calm down. 

 

 

So back to the sand we went to get Mimi and pack up all the stuff. I didn’t want to bring Shaun back onto the sand so I sat him at the entrance (that was in my view 100% of the time), with a lifeguard. 

Lugging Shaun and all our stuff back to the car as quickly as possible so we could return to the cottage to get his hives under control. 

When we arrived it was straight to the shower, a dose of hydroxyzine, ointment and cotton PJs (long pants / long sleeves) And within about 30 minutes he was finally more comfortable. 

 

Shaun stayed amazingly calm and happy despite the discomfort of the hives. 
Was it life-threatening? No, not this time, thank God! 

 

However, it was uncomfortable. It was stressful. It ended our afternoon at the beach before it even really began. It was disappointing and frustrating but it will not stop us from going back! 

What caused his hives? Almost impossible to answer. Often with Shaun’s hives, we don’t know the exact trigger: too hot, too cold, something in the ocean, the detergent residue on his bathing suit, the sand, something on the toilet seat that contacted his skin? And yes, this makes me crazy because without knowing the cause we can’t modify our plan to prevent it next time. 

See, allergy living can put you into a bubble if you let it. You must be relentless and determined to keep engaging even when, despite your careful, thoughtful preparation, you end up having a reaction. 

John and I feel it is critical to teach Shaun how to avoid becoming isolated! How to live a full safe life even though sometimes his beach trip will be cut short due to hives. 

 

Here is to a hive free beach trip next time, 

 

~ LC 

 

 

 

This post may contain affiliate links. Please read our disclosure for more info.

 

 

How to Get the Most Out of Your Doctors Appointments

How to Get the Most Out of Your Doctors Appointments

 

Until I had an allergy child, I didn’t realize the skill and planning required to have a successful and worthwhile visit to the doctor’s office.  It takes time to learn the skills and understand what you need to plan before each appointment! 

 

I know, it was a surprise to me too! 

 

My health has always been good … no major, chronic issues that affect my day to day life. I am very grateful for my good health, but my experience of yearly well visits or sick trips to address an ear infection or the flu left me utterly unprepared. The experience of working with doctors to diagnose and control a chronic health issue requires more than just showing up. 

Shaun, at about 3 months old, after 4 weeks of no improvement with angry eczema covering his skin (check it out here), was referred by our pediatrician to a pediatric dermatologist and then to an allergist. And at this point, I realized I was in over my head. 

3 different doctors, in 3 various offices all trying to help my little child. And although I was grateful for the team of experts we were assembling, everything felt repetitive and disjointed. 

 

I would show up to appointments with Shaun, ready for the doctor to come up with a plan to help us, but I was unprepared. I couldn’t remember (or pronounce) the name of the medications we were trying. I forgot what test the allergist recommended when I met with the dermatologist just a few short days later. I did my best but got distracted by my infant’s needs and, at times, fussiness causing me to miss important information. Each appointment I left with a new “plan of action” for Shaun’s care. 

My head was spinning, and my heart was aching. I wanted my son to be healthy! I wanted to be able to help him.

I realized I needed a more practical approach. To better advocate for my son. 

 

I needed to become a resource to the doctors providing them with the information, treatment plans, and tests the other doctors were trying.  

 

 

Step 1; and I know this sounds silly, but this is experience talking, double check all your appointment information with the office staff!

  • Write everything down or get a print out with the appointment information. This will help you remember the details, and you can refer to it if there is a conflict when you arrive at the doctors’ office.
  • Keep a record of who gave you the information. Taking down the name of who you spoke with will help if you need to talk to them again to adjust or confirm something. 

 

Because you will be working with the office staff a reasonable amount, especially in the beginning, it will also help you learn who is who. In some cases, all the office staff is excellent to work with, and this isn’t as necessary, but in other situations, you want to know who to ask for when you need to get something accomplished!  

 

Verify all aspects of the appointment: date and time, the doctor you will see, the office location (many allergists are spread across multiple offices depending on the day of the week if they’re doing food challenges that day, etc.) and the nature of the appointment.  

 

There is nothing more infuriating and devastating than showing up to your doctor’s office, carrying an infant with bleeding skin, in the dead of winter, desperate for help only to be told by the receptionist that you showed up on the wrong day! (At one office this happened to me several times) 

In those moments, my tired, momma heart fell flat! However, learning to keep this information organized gave me an advantage and the confidence to speak up to the office staff and explain that I was in the right place at the right time and that someone would see Shaun before I left the office. 

These days, now that we have a better handle on Shaun’s overall condition, I do not feel quite as desperate, but I still maintain this practice. Time is a valuable commodity that I never seem to have enough of and making this small investment to be sure to verify and keep a record of this information will only benefit me. 

 

 

Step 2; show up to the appointment prepared. 

Google Docs became my best friend! (not an ad, just really useful) I started keeping a record of all interactions concerning Shaun’s health condition and storing it on Google made it accessible on any computer or device. This made it easy to update several times a day if needed. 

Although I kept everything digitally, I also kept a physical binder. The binder came with me EVERYWHERE because you never know when the doctor is going to return your phone call. I have pulled to the side of the road many times to answer a call from Shaun’s doctor and check the numbers on the blood work results in “the binder.”  

 

Have your current care plan on hand! 

 

I began to notice that at the beginning of each appointment, we would be asked the same questions. So I walked into the exam room with a printed copy of my Google document, and I would give it to the doctor or staff. 

 

Some of the things I had included on the page were: 

  • Name and date of birth 
  • Current height and weight  
  • All current medications (including strength, dose, and frequency)
  • Known allergens 
  • Any other conditions that would need to be considered (in our case eczema and eventually asthma) 

 

Often the doctor or staff would copy the form and put it in their file. This saved us precious minutes with the doctor.

 

  • Bring written questions. Yes, have them written down, as many as you can think of. Understanding food allergies is essential to staying safe. One of the best ways to learn is by asking questions. I promise if you don’t write them down before the appointment, you will forget them! 

 

  • If the appointment is for a child, have books, toys and, if possible, a second adult. It can be hard to keep your child calm an occupied while trying to discuss and understand relevant information that is new to you. Having distractions and extra help will allow you to stay more engaged with the conversation. 

 

 

Step 3; take notes and keep copies! Write important things down during the appointment and ask for copies of care plans and test results.  

  • Any change(s) to the care plan 
  • Answers to your questions
  • Prep requirements for future testing 
  • Red flag symptoms and what response you should take 
  • Medication adjustments 

 

I took notes with a pen during the appointment and transferred it to my digital copy when I got home. (Not the most elegant, but it worked through the chaos) 

Yes, all this took a tremendous amount of time! 

 

But it helped to make the most of our time with Shaun’s doctors. We became efficient and effective! The doctors appreciated the preparation. And honestly, skills and planning allowed Shaun’s care team to get his eczema under control and food allergies diagnosed as quickly as possible. 

 

I am grateful to have learned the benefits of this kind of preparation before a doctors appointment! It is an important life skill to have. And maybe some of my tricks will leave you a few steps ahead during your next doctor’s visit. 

Be Well, 

~LC  

 

 

 

This post may contain affiliate links. Please read our disclosure for more info.

 

 

Food Challenges and What to Expect

Food Challenges and What to Expect

 

Food challenges are part of allergy living, and like most things in allergy life, it is stressful, nuanced, and rewarding all at the same time! A food challenge is considered “the gold standard” test to determine if a person is allergic or not to a specific food.

 

3 years ago this month, Shaun (at 19mo old) had his first food challenge (Soy) that ended in success! We left the allergy office that day with the OKAY to add soy products to his diet. (If you live with strict avoidance of soy, you know how huge this win was for us! Soy is in a tremendous amount of food.)   

 

 

Shaun has gone through 4 food challenges with a 75% success rate.

 

We have challenged:

Soy: Passed

Egg: Passed

Rice: Passed

Baked Cows Milk: Failed  (a post all its own)

Each time Shaun passes a food challenge, our menu opens up, and we feel a little lighter!

 

So what is a food challenge?

A food challenge is when an allergic person under the supervision of their allergist, in a highly controlled environment, eats food they have previously been diagnosed as allergic to and are strictly avoiding.

Our allergist looks at IEG blood work results along with results from skin tests to determine if a food MIGHT be successfully added to a person’s diet if it is challenged. The recommendations an allergist make varies depending on patient history, age, ability to communicate, etc.    

The entire food challenge process is very structured and highly monitored because although there is a chance that the outcome can be successful … there is also a chance that the challenge can end in hives, anaphylaxis, or anything in between.

For me, this was the part that elicited stress and strong emotions. How can I possibly bring Shaun into the doctor to feed him something that could send him into anaphylaxis? I had to rely on the controlled process and allow the reward of opening up his diet to outweigh the feelings of fear and the counter-intuitive nature of the food challenge.   

 

 

 

Here is what we have learned to expect with a food challenge:

 

They take a long time to schedule.

If your allergist recommends that you schedule one of these tests sometimes, it can take 6 months or more (we have waited 8 months) before there is an available appointment. Because these challenges take a minimum of 5 hours, there is a limited number of available appointments per day. Be ready to take what you can get and rearrange other plans.

 

You can’t be sick.

Because food allergies are auto-immune based, it is essential that your immune system is not already taxed at the time of your food challenge. This means a cold, virus, or infection just before or at the time of your scheduled test will require you to reschedule.

3 of our 4 food challenges have needed to be rescheduled. Yes, it is beyond frustrating but also an important reality. First, because an already burdened immune system will increase the risk of a reaction occurring, and secondly because if you were to carry out the challenge in this state, you could fail the test only because your immune system is already working so hard; leaving you with inaccurate results.   

 

Pass or fail it will be a long day in the office.

Because the doctors monitor you for any symptoms (from hives to anaphylaxis), you’ll be in the office for several hours. Plan to be out of work or school all day.

You will want to pack a few things to keep yourself busy!

With Shaun at such a young age, both John and I have always attended the food challenges together. This allows us to take turns distracting him in the small exam room and step out without leaving him alone if we need to use the bathroom or take a break.

We have read books, built puzzles, written postcards, played dinosaurs, colored, raced matchbox cars, and in really desperate moments watched movies. I try to pack one bag with varied activities that we can spend the day exploring. It is hard to be cooped up in a small room, but these activities help so much!

Also, it can be frigid in doctors offices, dressing in layers is crucial so you can add or remove layers as needed.

 

Skin Test

You most likely had a blood test, skin test or both to determine that you are in a position to schedule a food challenge, but the day you go in for the test they will repeat the skin test to verify that there have not been any changes that would increase the risk.

Skin test are, no doubt, unpleasant (we always have tears). Going through this just before the food challenge is another way the process is set up to lower the risk of anaphylaxis.  

 

 

Signing the release form.

As with any medical procedure, the food challenge includes a release form explaining all the things that could go wrong as a result of ingesting the food you are about to test. It is always a scary moment acknowledging the risk involved. However, it’s important to remember that THIS is the safest way to carry out a food challenge to increase dietary options!

 

 

Do not try to do this at home, without proper medical supervision and emergency personnel ready to assist!    

 

 

Dosing & Waiting

When you get the all clear to start the challenge, you will be given a precise dose of the food you are testing. Then you wait … 20 minutes … if you have no symptoms, a second dose (larger than the first) will be delivered.

This cycle will continue until you pass the test or have symptoms that end it.   

Pass or fail; there is hope in this process! Hope that you may be able to open up your diet.

Work closely with your allergist, push through the fear. Food challenges have been life-changing for us, and they might be for you too!  

 

 

 

 

This post may contain affiliate links. Please read our disclosure for more info.