Ep. 21 – 504 Plans

Ep. 21 – 504 Plans

Ep. 21 – 504 Plans

Links to help Manage a 504

Free and Appropriate Public Education

Americans with Disabilities Act of 1990

Q&A on the ADA Amendments Act of 2008

 

 

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3 Bean Chili

3 Bean Chili

In just two weeks, on February 27, it will be National Chili Day! 

 

I am not surprised at all that we celebrate chili day in the middle of winter because it is a perfect winter meal! Warm, filling, and versatile.

 

As a food allergy family, we are always looking for recipes that allow us to customize the ingredients – and chili fits the build. Chili is one of those meals where substitutions and flexibility do not ruin the integrity of the dish.  

 

Here is what I mean 

 

  • Bean type does not work for you? Pick a different bean variety 
  • Make it super spicy or not by increasing or removing the hot sauce or hot peppers  
  • Pick your protein! Beef chili, turkey chili, chicken chili, bean chili 
  • Add corn or diced peppers

 

As long as you maintain the proportions of the original recipe, you can substitute to your allergy needs and taste! 

 

Although our family has a few tried and true chili recipes, this option requires almost no planning to get on the dinner table. 

 

In our house, we have all the ingredients called for regularly. Perfect for a night when the fridge and pantry seem empty. Or the times when you forgot to take something out of the freezer for dinner. 

 

This 3 bean chili recipe got added to my recipe collection when my mom and I were early in our home daycare career. We provided breakfast, lunch, and a snack to the children in our care. USDA food programs that supported us sent the recipe in a monthly newsletter. 

 

And you guessed it; this recipe appeared in the February letter.

 

Over time the recipe has changed little by little to accommodate my taste (the original was a bit under-spiced in my opinion) As well as to accommodate Shaun’s food allergies.

 

Here are the reasons I LOVE this recipe: 

 

  1. It is yummy – For me, the taste of a dish is always #1. The flavor should not be compromised in something allergy-friendly.

 

  1. It is a quick, simple meal. – one cutting board, one-pot: easy clean up too! 

 

  1. It is packed with protein. 

 

  1. It is a plant-based option – We are not vegetarian or vegan, but I do like to have a few plant-based meals that we can filter into our weekly meal rotation, helping to balance meat consumption.

 

  1. Toppings are customizable in the dish! Make it easy to accommodate allergy needs and personal taste.

 

I hope you give it a try! 

 

 

 

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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 

 

 

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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  

 

 

 

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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!  

 

 

 

 

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Epinephrine Shortages and What You Can Do

Epinephrine Shortages and What You Can Do

 

 

As of at least August 2018 (though some sources mention it as early as May of last year), there has been a shortage of available epinephrine for consumers.

 

 

This is a scary situation, as epinephrine is the single most crucial remedy for an anaphylactic reaction to a food allergy. Proper and timely administration of epinephrine is often the difference between a person living or dying from a food allergy.

 

FARE, of course, has a great page about the shortage that they continually update. This same page also links to HealthMart, which has a tool that you can use to find independent pharmacies in your area that may have the availability of stock of epinephrine.

 

There are also several other places (MarketWatch, AllergicLiving, The Lancet) that comment on the issue, and each has some good advice/tips on dealing with the shortage and finding available epinephrine auto-injectors in your area. Most of these are several months old, being written after the initial deficit was announced, but still, have relevant information.

 

Despite all of that, you do have options.

 

Extended Expiration Dates

Pfizer and the FDA have issued extensions on the expiration dates printed on some lots of EpiPens, to alleviate some of the shortage (Link). “The extension of the expiration dates does not apply to EpiPen Jr® (epinephrine injection, USP) 0.15 mg Auto-Injectors and its authorized generic version. Patients must continue to adhere to the manufacturer’s expiry date labeled on EpiPen Jr® 0.15 mg and Epinephrine Injection, USP Auto-Injectors 0.15 products.”

 

Independent Studies on Effectiveness

In addition to the above, there have been independent studies conducted indicating that EpiPens retain a high level of concentration and effectiveness long after their labeled expiration dates. CNN posted an article that links to one such study (and several other resources)

 

We have always kept ALL of Shaun’s expired EpiPens as backups for his valid, non-expired, auto-injectors. Our thought process has always been that we’d rather have expired epinephrine, than none at all.

 

Alternative to EpiPen

There are alternatives to EpiPens as well. Trained medical professionals can, and will, sometimes use epinephrine drawn from a vial and injected via syringe. Most people who aren’t trained professionals though, generally aren’t comfortable with this method, especially in a chaotic or tense moment when you, or someone you care about, may be in danger.

 

Auvi-Q is a relatively recent addition to the auto-injector market, and in a lot of ways is already better than the EpiPen (in our opinion). It is considerably smaller and more comfortable to carry and tends to be the one we grab if we want to just put one in our pocket, rather than bringing Shaun’s entire backpack with us somewhere.

 

 

The Auvi-Q also has voice instructions on how to administer it, should you ever be in a situation where someone may be completely unfamiliar with how to give an auto-injector. Auvi-Q offers its “Kaléo Cares Patient Assistance Program,” which can significantly reduce, or even offset the cost of their auto-injectors completely.

 

More treatments are being developed every day. Hopefully, Big-Pharma will embrace the scientifically-proven concentrations that epinephrine can maintain for years after their labeled expiration dates. And ideally, shortages will start to decrease soon.

 

 

 

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