Don’t Be Afraid When You Don’t Fit In

Last month, I had the opportunity to be a guest blogger for the Married to Doctors podcast website.  If you are not listening to Lara’s podcast, you need to start! She is amazing!! I am honored to be able to share our family’s story with other medical families who may also be struggling like we were in medical school and give them hope that it will get better. So be sure to check out my article below and give Lara’s podcast “Married to Doctors” a listen (You can tune in on everything from Spotify to Apple podcasts)!

Thank you again for all of your love and support! Don’t Be Afraid When You Don’t Fit In

Edit- I was just informed that the website is no longer working. So I am attaching the article below!

Happy Travelin’


Looking back now medical school for our family was all about chasing the highs and
weathering the storms of the lows. After moving thousands of miles across the country. Medical
school was the first time we had ever been completely on our own. It was just my husband and
I. If I had to describe myself back then, I’d say I was excited but nervous about the long medical
journey ahead. Four years of school and four years of residency training seemed like a lifetime
and for this reason, I couldn’t wait to meet all the other medical student significant others who
would be on the journey with me. I just knew we would all quickly be bonded for life like the girls
from the “Sisterhood of the Traveling Pants” movie. Unfortunately, I quickly realized that my
family stuck out like a sore thumb. The only way I can describe it, is that I felt like we were
unicorns in a sea of zebras! There were only a handful of medical students with families in my
husbands’ class but we seemed to be the only ones with kids who seemed different. We
couldn’t quite figure out why but early social events just didn’t feel right. Our kids weren’t
interacting like the other kids and we just weren’t enjoying ourselves at all. We had no idea why
and after a while we just stopped trying. It was devastating for me. I felt so alone.

About a month into medical school, we received news that our nine month old baby had
a rare disease called food protein-induced enterocolitis syndrome or ‘FPIES’. This explained his
persistent episodes of projectile vomiting and lethargy. He had 38 food allergies that could
cause an FPIES reaction. Each reaction seemed worse than the last and would leave my baby
gray and lethargic, too weak to support his own head and vomiting so forcefully that he had
trouble catching his breath in between retches. I was relieved to have a diagnosis but it also
meant a self imposed house arrest for us for the foreseeable future. He was at the age where
he would put anything in his mouth and a literal crumb could trigger a reaction. I made sure my
home was always so clean that you could safely eat off my floor. I treated my house like a Fort
Knox of cleanliness and allergen-free eating. The last thing on my mind now was meeting new
friends and having play dates in our new city. Instead, I was a mama bear who needed to keep
her baby safe from the allergen-filled outside world.

With all these allergies to common foods like corn, soy and dairy, he required special
formula just to avoid reactions. We could not afford this special formula on a medical student
budget so we had to use WIC (Women, Infants & Children) vouchers to pay for it. To this day, I
am so grateful for WIC and without that program we would not have been able to feed our very
sick baby boy. Luckily, by age four, he had actually outgrown all 38 food allergies and is now
bigger than his older brother! Those years of being trapped in the house and playing with him all
day long are now some of my favorite memories. To this day, I still find myself checking
ingredients for allergens, so I guess once an allergy mom always an allergy mom!
Two years into medical school, and days before my other son was about to start
Kindergarten, my world was again changed forever when we awoke in the early morning hours
to find him having a full tonic-clonic seizure at the foot of our bed. That night will forever be
engraved into my brain because, for a few moments, we thought we were going to lose our sweet boy forever. I will never forget my husband telling me he thought he was going to have to
start CPR, because he had stopped breathing. I remember screaming at my husband that I
couldn’t remember how to dial 911. Once he was transferred to the hospital, the ER doctor told
us this was likely an isolated seizure and would probably never happen again. The next night,
just to be safe, we decided to sleep in shifts and have him sleep between us. Sure enough, he
had another seizure. This time he was able to come out of it and managed to say to us, “I hate it
when that happens.” My husband and I were in complete and utter shock! We took him back to
the hospital for an EEG. After the test, the neurologist came into the room, sat us down and
said, “The EEG was abnormal. Your son has epilepsy.” After he said those words my body went
numb and everything was a blur from then on. We were admitted that night for further testing.
That was one of the longest nights of my life. I kept thinking of all of these awful things that are
associated with epilepsy. Luckily the remainder of his tests came back normal and he was
discharged on daily medication.

To this day, epilepsy has been one of the hardest things we faced in medical school
because it is still so unexpected and can strike in a moments notice. Every seizure still scares
the daylights out of me and, at this point, I swear they have taken years off my life. I hate that
my sweet boy has to go through this and I hate that his little brother and older sister have to see
it and step up to help me when their dad is at work. I am also grateful though, because it is
making them both more accepting and accommodating of those with disabilities and special
needs. Our daughter is currently writing a speech for her school project to educate her peers
about epilepsy and what to do if you ever come across someone having a seizure.
I know what you’re thinking, it can’t get any worse for this poor family right?!? Well, yes
and no… so before epilepsy was even a factor, we knew my oldest son was special. I mentioned
before that social events just didn’t work well for us. He always did things different from my other
children. He had special dietary needs, sensory needs, etc. So, after years of occupational
therapy and conversations with his pediatrician, I set up an appointment with a developmental
pediatrician. When I set up the appointment, my husband and I both suspected he might have
Aspergers syndrome, which is now considered part of the Autism Spectrum Disorder. After
years of being worked up with other GI doctors back home in Boston before medical school,
though, I kind of figured they would just say they couldn’t find anything wrong and send us on
our way.

So, after 15 months of waiting the day finally came! My husband and I made a list of all
the behaviors and signs that we had noticed over the past years. That day, the pediatrician
came in asked me some questions before taking my son in and performing the examination. A
few hours later I was called in and she sat me down and said, “You were right, your son has
Aspergers syndrome which is now a part of the Autism Spectrum Disorder”. Once again my
body went numb. For some reason, this diagnosis was harder for me to swallow at first. From
there, it took me months of grieving, acceptance and lots and lots of tears. Then finally, one day
I looked at him and realized it’s simply a diagnosis and nothing more. He is still my sweet boy
who loves cars, America and his family so much. Even though those first few months were tough, I definitely think it was important for me to go through that to be able to be the best autism mom I can be for him today.

Even though I didn’t manage to leave medical school with a pair of magical pants or a
sisterhood of best friends, I did have a kick ass team of family and friends that supported us
(many from across the country!) through the good and bad. If I could describe myself now, I
would say that I’m stronger for it and still hopeful for the future. I know my story may be nothing
like yours but it is just that, my story. Life is what you make of it. Even in our lowest of our lows,
there were people I would have never expected to be there who showed up for us. Those are
the people who matter to me now. They may not have a special needs kiddo or have a doctor
spouse but they are my tribe and I’m forever grateful.

So, if you ever find yourself in a sea of zebras, don’t be afraid to be a unicorn!

Traveling to Walt Disney World with FPIES

As many of you may know my youngest was diagnosed with FPIES (Food Protein Induced Entercolitis Syndrome) as an infant. FPIES forever changed our lives. The outside world suddenly became a terrifying place to bring my infant son because all it would took was a single crumb to turn our day into a medical nightmare. The FPIES foundation was not only an amazing resource but also a ray of light in the darkness of this disease. They became our only support and guided us to where we are today. I am forever grateful for them, their support and their resources. 

Recently, the FPIES foundation reached out to me and asked if I was interested in writing a blog article for them about traveling with FPIES. Not only was I honored to have the opportunity to give back to them for all they have done for us but they also asked me to write a Disney article! (One of my favorite subjects!) Please join me in spreading FPIES awareness. I hope you enjoy my article Traveling to Walt Disney World with FPIES

Happy Travelin’

Ten Fabulous Traveling Tips

This year my family & I have been fortunate enough to be able to take some amazing trips. We have traveled to Disney World, Boston, MA, Washington, DC, Durham, NC, Wilmington, NC, Hilton Head, SC and Jacksonville, Fl. While some of these trips were planned some were also spontaneous adventures. Our family loves to pack up the car for a night or two and take the kids on a mystery ride. Over the years we have mastered the art of the road trip. I thought I would share a few tips with you.

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1. Hangers- Most hotels already have some in your room however if they don’t then I recommend bringing some from home. We use hangers to hang our wet bathing suits on. Genius, I know right! This saves us some coin, so we don’t have to use the hotel dryer. There is nothing I hate more than coming home from a trip with your suitcase smelling like stale pool water (gross!). Most Disney World Resort hotels have a clothesline in the shower, so I recommend bringing clothes pins, since they take up less space.

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2. Bins- Most of the time you can find these bins in my office filled with all sorts of fun finds. When we are traveling I empty it out and fill the drawers with food for my boys, since they require special allergy friendly diets. The key is to find bins that are portable but also are not too heavy when you fill the drawers with food. The bins work out great in hotel rooms since there is usually not a lot of extra space to store food. When traveling to Disney World we like to pack extra food for the entire family so that we do not have to eat out as much, which saves us a lot of money in the parks!

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3. Collapsible Hamper- I picked up this beauty at the Dollar store. Since we are a family of five we have a lot of laundry! The hamper comes in handy so that we do not have to put dirty clothes in our suitcase with our clean clothes. It also makes going to the hotel laundry room a lot easier!

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4. Toy organizer for your car- We bought this toy organizer a few years ago and it was worth every penny! Trust me, you and your car will thank me for this tip! There is nothing worse than taking a road trip with kids and arriving to your destination to find your backseat looking like a bomb went off! I have found that a Dollar store shoe organizer does the trick just as well!

5. Prizes/ Car Games- After a few hours in the car I am sure your little ones have already played with every toy they brought with them. This is when I get the mom of year award… before the trip I will go to the Dollar Store or hit up the Target dollar bins and buy some small games & toys. I will then randomly hand out a few of these prizes to keep the little ones entertained for the remainder of the trip. Our family loves car games to pass the time. One of our favorite games is Eye Spy. Although after a while you may tire of the same trees, cars and billboards. Once your little ones learn how to read you can play the license plate game which is always fun. Another tip is to save unopened kids meal toys. My kids get so excited for kid’s meal toys, it is like Christmas morning all over again!

6. Plan Breaks- I like to get to our destination as fast as possible but when traveling with little ones I have found that planning breaks ahead of time is a must! I like to find stops where the kids can run and play. I have found that most outlet shops have playgrounds that are a great way to get some ‘ya yas’ out before continuing on with your trip. We also like to pack a lunch, have a picnic and maybe do a little shopping. If you don’t have access to any outlets or malls along your journey then you can also turn a rest stop into a fun adventure. You can have your little ones play tag or simply just run before heading back in the car. Don’t forget to have everyone empty his or her bladders before getting in the car! I can’t even begin to tell you how many times we have left a rest stop just to have someone say five minutes later that they need to use the bathroom.

7. Portable DVD player- This is my secret weapon! My kids can tell you that it takes us about 4 movies to get to Disney World, ha-ha! Whenever we are about to take a long car ride we hook up the DVD players even if we decide not to use them. They are a wonderful distraction from the long hours in the car plus who doesn’t enjoy a few hours of screen time!

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8. Snack Bag- This was a gift from another Disney loving family like us! Anytime we are planning to leave our house for a few hours we take our snack bag along and fill it with allergy friendly snacks for our boys as well as some breakfast & lunch food so we can stop and have a picnic. Most highway rest stops are filled with junk food or fast food so bringing healthy treats from home is super helpful and saves you some money.

9. Overnight Bag- Some of our road trips are 10 hours or more so we like to stop at a hotel for a night and get a good night sleep before continuing on our adventure. Instead of bringing in 4 suitcases into the hotel for just one night I usually pack an overnight bag for the entire family. I will pack pajamas, a change or clothes and a bathing suit (if the hotel has a pool) for everyone. I also like to do this when we travel on a plane too just in case the airline happens to lose our luggage. Also, when traveling to Disney World, the Magical Express will pick you up and take you to your hotel then magically your suitcase arrives at your room a few hours later. While waiting for your luggage to arrive however, it is nice to have quick access to a bathing suit or a fresh change of clothes after a long day of travel.

10. Blow up tube- I purchased this one at the Dollar store. I keep it in our suitcase as a back up if I forget to bring our Puddle Jumper life vest. A blow up tube is perfect for traveling because its compact and all you need is a little hot air! There is nothing better than arriving to your hotel after a long day and taking a dip in the pool! Also a great way for your little ones to get some energy out before heading to bed.

If you have decided to fly instead of drive to your destination, I have found that the cheapest flights are best to book on a Tuesday at 3:00pm six weeks prior to your trip. Our family has also found that last-minute travel websites like Priceline are amazing for saving a ton a money at the last minute. We have stayed at 4 & 5 star hotels for a quarter of the price and sometimes we have booked them an hour prior to arriving! Hope you have found these travel tips helpful!

Happy Travelin’

Disney tips for kids with food allergies



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  1. Plan ahead! You can never be too prepared for a trip. There are so many great tools out there to help you plan ahead such as websites and books. Two websites I find to be most helpful are the Disney World website which lists their menus and answers most questions you have. They also have a separate website called the Moms panel which is a group of moms and a few dads who frequent Disney so you can ask them questions and they do their best to answer it in a reasonable time. Another website I find helpful is Allears.com It is not owned by Disney but it is just as helpful as the Disney website.

 

  1. Once you make your reservations online or over the phone you can add any allergies to your reservations to give the restaurant a heads up on what to expect.If you are making a reservation online once you get to the last page before you confirm your reservation, this is were you can add special requests. Click on the add button and it will take you to another screen.Screen Shot 2016-07-05 at 5.52.53 PMOnce you are on the Special Request Screen you can add your allergy requests by checking off the boxes that pertain to you. Also if you need more assistance you can e-mail Disney at SpecialDiets@DisneyWorld.com or call (407) 824-5967Screen Shot 2016-07-05 at 5.53.48 PM

On our very first trip to Disney World I had e-mailed the chefs ahead of time to make sure they knew we were coming. This was super helpful when dining at O’hana. The Chef said she was able to put aside a brand new waffle maker just for my son to make sure it would not be cross contaminated for him! I have also called Disney before (the number listed above) to order special cakes for special occasions.IMG_2726

 

  1. Tell your server you have an allergy in your party. Disney is so wonderful when it comes to accommodating you and any food concerns you may have. Just be sure to remind your server so the chef can come out to the table and speak to you. Once the Chef comes over, you can let them know all your allergies. They will do their best to create something for you. I have been to a few restaurant’s that were unable to make my son anything because he has so many allergies. But this is very rare & luckily I had already brought a back up meal for him just in case Disney was not successful in accommodating him. So when in doubt bring a meal or snack from home. Disney allows you to bring food into all of their parks & most restaurants. We have never had an issue bringing special food from home for our boys with allergies.

 

  1. Be sure to write down any names of Cast members that went above & beyond for you and your party so you can let Disney know at the end of your trip. Disney loves to reward the cast members who made your trip extra magical.

Happy Travelin’

 

Travelin’ with Allergens (Food that is!)

My son has several different food allergies, which makes traveling and going to restaurants a bit challenging. On the up side finding soy free, dairy free and egg free products is a lot easier now a days. You no longer have to go to specialty food stores! I buy most of my son’s special food products at our local grocery store and I buy them at a reasonable price, which is always a plus! Here are a few tips that I have learned over the past year that may help you out!

Tip 1: Don’t forget to read food labels!

I cannot tell you how many times I have forgotten to check a food label… I would have never of guessed how many allergens could be hidden in a product! Most parents of children with food allergies know how important it is to read the ingredients label. In my house, to make life easier for me and for my family, my son has a special shelf in the food pantry that has all of his allergy free foods. I also label all foods in my pantry and in my refrigerator with a giant black “X” if that food is not safe for my son to have which makes sure that I don’t accidently give him something he cannot have. Even at restaurants I ask to read the ingredient listed on all the food that my son will be eating.

Tip 2: Don’t be afraid to leave your house!

Every time my son has an allergic reaction to something I immediately change into overprotective mom mode. I know that I cannot protect my son from the world (even though I try!) and after a few days of rashes and vomiting I soon realize that he is a toddler and needs to be a toddler! Luckily my son does not have life threatening allergies or else I think I’d be a complete basket case.

Tip 3: Don’t be afraid to bring food from home!

Lunch totes

Whenever I leave the house I always remember to pack my son snacks or even a full meal to bring with us. Having your child’s favorite foods on hand can be a lifesaver when you are out somewhere and you want to buy yourself (or your other child) a treat that contains allergens. I bought a lunch tote on clearance at Target at the end of fall that is the perfect size for traveling. I also bought a cheap ice pack at the grocery store for $0.79, which fits perfectly in the bottom of the bag. I take the tote pretty much everywhere… Even into restaurants!

Tip 4: Don’t be afraid to eat at restaurants!

Restaurants over the past few years have become very accommodating to people with food allergies. If I know ahead of time that we will be eating at a restaurant I will go onto the restaurants website and research the menu. Most chain restaurants have a special menu for people with food allergies. Then when I arrive at the restaurant I will inform the server what my son’s allergies are so that he or she can inform the chef. I have yet to find a restaurant that has not found something for my son to eat.

Tip 5: Don’t be afraid to fly!

The TSA and most airlines have recently made flying with food allergies easier. The TSA allows you to bring milk, juice, and formula for children in your carry-on bag.  These items are excluded from the 3-1-1 rule! (Check out the TSA website for an explanation of the 3-1-1 rule) Also, before you travel make sure to check out the TSA’s website on items that are on the ‘prohibited list’ to ensure that you can bring it through security without any issues. I also brought a note from my son’s pediatrician that listed the items he is allergic to and the items that we therefore had to bring in our carry-on (i.e. Rice milk). Before you book any airfare though, you should look up the airlines policy on traveling with allergies. In a few days we will be traveling with Jet Blue ourselves and I was amazed to find out that they make sure you are seated in an area that is free of allergens (such as peanuts). If for some reason they are unable to accommodate you then they will reimburse you for the airfare.

Even though having a child with food allergies can be challenging at times. With good planning and preparation you can travel with them have fun and keep them safe!

Happy Travelin!