Resources For Kids: Things to do in the Hospital

Things to do in the Hospital

By Zack Skrip 

At the FPIES foundation, we know that hospital visits can be an unfortunate part of our lives. Many of us have hospital bags packed so that we can trundle our little ones off to the hospital as quickly as possible at any time of the day.

When we are fortunate, it’s a quick visit and we are released the same day. But some visits require more time. In fact, sometimes you’ll be in the hospital, and your child will be well enough to want to do things but due to IVs or maybe hospital policy, you’ll be unable to give them the freedom they’d have at home.

My family spent about 5mos in the hospital last year. When it comes to hospital living, sadly, we know what we are talking about. Also, our hospitalizations were spent across the country from where we live, so we didn’t have the freedom to run home and change out books or toys.

These are the tricks we learned last year.

TV

This is where you’ll start. If your child is quite ill, then this is where you’ll stay, too. Kids are naturally attracted to TV and in your frazzled state you’ll appreciate the distraction also.

Try not to let this get out of hand though. As the hours turn into days, TV has a way of making you (and your child) anxious or “antzy.”

Consider making TV a prize that you get to watch, maybe at a certain time of day (“It has to be after 3pm…”), after they finish their food trial, or maybe after a certain amount of time spent doing a different activity.

I’m going to be honest with you. You are going to watch a lot of television. I know you don’t let your kids watch that much at home. You aren’t a bad parent. Hospitals suck. This is what it is.

Reading

Reading can be tough when you just get to the hospital, especially depending on how sick everyone is, but over time, it’ll provide a very pleasant distraction from the environment and a reason to stop watching TV.

The tough thing about books can be having them with you. Books take up a lot of space, and kid’s books are by nature short--so you need a lot of them. “Kindle!” you all say. Well, yes. There are Kindle versions of kids books, but unless you are really committed to the platform, I’m assuming most of your kids book will be the old fashioned paper kind.

So, unless you want to keep a stack separate, ready to grab on your way out the door, it’s more than likely that you won’t bring very many books with you (if any).

Here’s what you can do:

Buy a few children’s book compendiums. These large, convenient volumes have many children’s books published together. This way you can grab one or two and be set for a short stay. The only downfall, is that they are heavy, and therefore hard to read lying down. Here are our favorites:

• The 20th Century Children’s Book Treasury: Picture Books and Stories to Read Aloud
• A First Book of Fairy Tales
• HarperCollins Treasury of Picture Book Classics: A Child’s First Collection
• The Tall Book of Nursery Tales

You can buy most of these used, and that could save you a little bit of money. Hospital stays aside, these volumes contain many of the best stories, so they’re good to have anyway.

         YouTube

You would think this would be in the same category as TV, but I’ve learned how to convince myself that it isn’t, if only because of the educational value we’ve gotten from it.

As you read through stories or go about your day, think of things that your child might not have ever been exposed to, and then use YouTube to show them what it’s like.

For instance, we were working on a sticker sheet that had dinosaurs and volcano's. I realized my son had never seen real lava before so we spent ten minutes looking at lava flows on YouTube. Many of the YouTubers helpfully put things like pop-cans and iPhones in the way of the lava so we could see them explode into flames.

You have to take your education where you can get it.

Aside from nature, there are all sorts of other fun things to use YouTube for. For instance, my son learned all of the instruments in the orchestra over one hospital stay. We’d search for classical music concerts and then name the instruments. (If you’d like to introduce your child to classical music, I’d suggest you start here. These guys are hilarious.)

Crafts

Crafts can provide a fun way to spend some time. They allow your child to use their fine motor skills, get creative, and still stay in bed (if that’s required).

Coloring is the easiest thing to do, and most nursing stations have crayons and coloring sheets available, just ask for them.

My son and I had fun making different paper airplanes (again, ask for some blank copy paper from the nursing station). We’d watch the instructions (thank you, YouTube) and then try it out on our own. You can see which plane goes the fastest, farthest, loops the best, etc.

Another option is to make finger puppets and then play out your child’s favorite fairy tales or stories. Don’t overthink this. One time I took a couple of non-latex gloves, cut off the fingertips, drew different smiles on them and then acted out Hansel and Gretel.

Of course, Pinterest would have a large offering of more creative options, but in the moment, the glove people worked out just fine (but make sure they don’t get swallowed).

Fun Toys

Toys from home can bring a lot of comfort to your child, as it will bring some continuity to what can be a very scary experience. Whether it’s a few favorite stuffed animals or games, bring a couple of toys with you.

If your child is older, or going to be in-patient for a longer period of time, consider some sort of building toy, like Duplos or Magna Tiles. We love the latter because they pack flat and can be wiped down with disinfectant when they take a tumble to the floor. These tiles can be a bit expensive, but if you watch for deals, you can get them discounted.

Remember that most hospitals have a play room that you can usually borrow toys from. So don’t feel like you have to pack something from home. The best part is that once your child is tired of that toy, the staff will pick it up and drop off a different one.

Hospital Resources

Ask your nurse or the floor social worker what other resources are available. Depending on the hospital, you may find any number of the below are offered:

• Music Therapy
• Therapy Dogs
• Hospital Library
• Children’s toy room

Children’s hospitals especially will have other resources to make your stay as positive as it can be.

Conclusion

These were our favorite ways to spend time in the hospital. What have you found to be the most helpful or comforting while spending time in-patient? Let us know in the comments.

This post written by and contributed to The FPIES Foundation by Zack Skrip. Between working for three different major pharmaceutical companies and being a parent of a child with a chronic illness, Zack knows that accurate healthcare information is vital. He’s a freelance medical copy and business writer, and you can email him at zack@zsmarketing.net. 

Mangos for Max, a child’s food allergy book

Mangos for Max,

A child’s food allergy book by Dr. Jessica St. Louis

Dr. Jessica St. Louis had the idea to write “Mangos for Max” when her oldest son with multiple food allergies was entering preschool. She was looking for a book that would introduce food allergies to preschoolers without overwhelming the young audience; and so Mangos for Max was written.  It introduces food allergies in a way to teach to others but also benefit the child with food allergies themselves, including FPIES.  

Families living with FPIES have been recommending this book, and we are honored to have the opportunity to ‘sit down’ with Dr. St.Louis and let her tell us a little more about her book.

What is “Mangos for Max” about?

Mangos for Max follows the adventures of Max, a young school-age monkey, as he lives life, makes friends, and eats mangos instead of bananas due to his allergy.  Full of bright and whimsical illustrations, this book will enchant young readers as they watch young Max the monkey live it up, make friends, and have lots of fun along the way. Engaging and informative while remaining silly and playful, this delightful story has a message young readers will take to heart.

How is “Mangos for Max” different than other books about food allergies for kids?

I would have to say that "Mangos for Max" is an optimistic story which focuses on the positive outcome of when all children stay safe while eating in a group setting. I didn't want my book to focus on the allergen per se, I wanted the safety issue to be addressed followed by the story continuing with positive reinforcement. When my oldest son was entering preschool, I wanted to find a book that I could read to his class that would describe food allergies without all of the details of what can happen after food exposure. I felt some stories could be a little overwhelming for the little ones. So I was on the hunt for a story to gently introduce the topic of food allergies, which could benefit not only the food allergic child, but the classmates as well. Since, I couldn’t find exactly what I wanted to read to a younger audience, I decided to write it myself.

Does the book allow for teaching of non-IgE allergies?/What do you think would be most beneficial for a child with FPIES in your book?

I wrote Mangos for Max in a way that it could include all children.   Since most children can relate to monkeys eating bananas I focused on that particular allergen.  I did not want to pick from the top 8 allergens, as I felt children would fixate on the fact it was such a common allergen making it less inconclusive.  However, since bananas happen to be a common FPIES trigger, I have heard many responses saying their FPIES child could relate to this.

How have kids responded to this book? Have you heard from other FPIES families that found this book helpful?

I have heard from a lot of different families with food sensitivities, anaphylaxis, FPIES, and even from children on specific diets due to other medical conditions outside of allergies.  What I have found the most surprising is the positive response I have received from children who do not have food allergies.  I have met many while doing book readings, as I usually read to a classroom.  Children who have friends with food allergies can be extremely supportive and I love seeing the enthusiastic response they have shown.  

Dr. Jessica St. Louis is the mother of children with multiple food allergies who enjoys reading to preschools, elementary schools, and small groups to advocate food allergy awareness and education.  She lives in Austin, TX with her husband and two boys where they can often be seen enjoying family bicycle rides.  For more on Mango’s for Max website. 

This post was written by the Executive Board of The FPIES Foundation 

The FPIES Foundation Celebrates Three Years!

The FPIES Foundation is excited to celebrate its third anniversary of empowering, educating and helping families around the world to navigate life with Food Protein-Induced Enterocolitis Syndrome (FPIES).

This past year was packed with numerous accomplishments, big and small. The FPIES Foundation achieved its goal of launching a first-of-its-kind FPIES Global Patient Registry. The registry is a ground-breaking opportunity to directly bring families affected by FPIES together with doctors and researchers interested in learning more about this rare allergy.

We are also excited to announce that The FPIES Foundation has established October 14th as Global FPIES Day. Global FPIES Day honors families by giving the opportunity to bring specific awareness to what FPIES is to the general public.

“There are days to recognize other food allergies and rare diseases, but FPIES is unique and the children are extraordinary. They deserve this day just for them,” says Joy Meyer, Executive Director of the FPIES Foundation. Meyer says, “October 14th was chosen specifically because the first research paper to mention the features of FPIES was published in October.”

In addition to establishing the FPIES Global Patient Registry and Global FPIES Day, achievements by the Foundation that were accomplished this year include:

• Releasing a Free Educational Webinar, “Advocating for your child in the Healthcare System” made possible through our partnership with ThriveRx. Find the recording to this webinar along with documentation resources and educational tools for becoming an advocate on the Advocacy page of the website. 

• Launching ‘The Kids Spot’. This section created just for kids, older FPIES children and their siblings can find support in a fun, interactive way that shows them they are not alone. Here they can find support for school, hospital stays, and social situations. Also, be sure to check out the Brag Board and Kids in Action pages!

• Engaging the community in “FPIES Be the Voice,” “FPIES Share how you Care,” and “Love your FPIES Selfie” social media campaigns. Hundreds of families helped us raise awareness in conjunction with Rare Diseases Day and Food Allergy Awareness Week

• Designing new FPIES Awareness Flyers and Cards

• Participating in the Free Allergy Day at Boston’s Franklin Park Zoo and the Food Allergy Support Group of MN Food Allergy Resource Fair

• Partnering with Sarah's FPIES Clubhouse, a great place for kids to share fun stories and activities!

• Supporting teams raising awareness in the Food Allergy community by participating in various FARE walks nationwide.

• Appearing in the Advocacy Month Feature in Complex Child E-Magazine, "FPIES: The Formation of a Foundation."

• Engaging in Social media outreach through Facebook/Twitter/Pinterest and the FPIES Foundation blog

• Expanding our online Provider Database to increase the number of FPIES informed providers committed to helping children living with FPIES.

• Achieving the Top-rated Non-Profit award from Great NonProfits, a distinction given to less than 10 percent of eligible non-profits.

• Appearing in “Big Y’s Dietitian’s Corner” and “Today’s Dietitian” articles, prominently featuring FPIES and The FPIES Foundation

• Participating in Feeding Tube Awareness Day, Rare Diseases Day and Food Allergy Awareness Week

The work does not stop here. The FPIES Foundation is excited for the year ahead and plans additional announcements in the coming weeks about our latest efforts in raising FPIES Awareness. 

This post was written by the Executive Board of The FPIES Foundation 

Kids in Action: Meet Sarah!

She’s 9-years old. She loves the A-Team and Selena Gomez. And, she has FPIES.

Meet Sarah from “Sarah’s FPIES Clubhouse.”

We recently had the opportunity to interview Sarah and her mom and learned that Sarah is one courageous little girl with a huge heart, a love for animals and a desire to help others.

The Clubhouse came about as Sarah’s mom, Jenn Booth, watched her daughter struggle physically and emotionally with FPIES. Jenn says, “If I had to choose the hardest part for me, I would say it is trying to help her feel normal in a world that revolves around food. She had never met another kid like herself and could not be convinced that she was "normal". After all she was the only one in her class who couldn't eat what the other kids ate. . . She started calling herself a freak.”

Jenn knew something needed to change and asked Sarah if she’d like to “meet” other kids, just like her. Soon, they launched “Sarah’s FPIES Clubhouse” on Facebook.

Sarah says her favorite part about the Clubhouse is, “hearing other kids stories. . . knowing other kids like me makes it easier. ” She wants other kids on the FPIES journey to know you can, “start out slow and you will be able to add more foods later.” She reminds these children that if they ever feel alone, she will “be their friend.” “When I talk to friends from the clubhouse,” she adds, “we don't talk about food, we talk about Legos!”

As it approaches its one-year anniversary (in May!), “Sarah’s FPIES Clubhouse” has almost 250 members on Facebook, to date. It welcomes anyone affected by FPIES who wants to show support for these children and their families. Clubhouse members participate in a lot of fun activities from 2-minute dance parties to getting a visit from “Flat Stanley” in his travels. Clubhouse members look forward to “Food Pass Friday,” celebrating triumphs together. They also celebrate birthdays, including sibling birthdays, understanding that FPIES can affect the entire family, not just those with the diagnosis.

Jenn says Sarah is stronger than her and has taught her a lot, saying, “Sometimes little people have a greater understanding of the world than you think.”

Sarah says she wants other kids to know that they can make a difference too. She says all they have to do is, “be nice to other people and help them understand.”

And as for life with FPIES? Sarah says, “Watch out FPIES, I'm in it to win it !” Powerful words from an amazing little girl who uses her strength to help others.

About Sarah’s FPIES Clubhouse:

Sarah’s FPIES Clubhouse is inspired by Sarah, FPIES Kids Ambassador living with FPIES, and created and organized by her mother, Jenn Booth, FPIES Advocate and Volunteer Board Member for The FPIES Foundation to provide an avenue of support and community for kids and serve to build awareness for others to understand what living with FPIES means to the kids affected daily by this allergy.

Please note: in efforts from Sarah’s FPIES Clubhouse to provide a safe kid-friendly environment, the community is a private and confidential Facebook group (posts made cannot be seen on your facebook wall).   Please post questions and news in the group where all can benefit. Please keep in mind, facebook is a social media outlet that operates independently from Sarah’s FPIES Clubhouse and The FPIES Foundation; and while all posts are private, they are Facebook property and public record.  


This article was written and interview conducted by Victoria Warren.  Victoria is a television news reporter for the NBC affiliate in Boston, WHDH-TV.  Victoria is a parent volunteer with The FPIES Foundation Volunteer Advisory Board.  Follow Victoria on twitter @VWarrenon7.

THE ‘KIDS SPOT’: OFFERING A ‘WHOLE FAMILY’ APPROACH

Our children are the cornerstone of The Foundation. We strive everyday to educate, advocate and empower the families and medical professionals who support them 

The FPIES Foundation is excited to have recently launched the ‘Kids Spot.’  The ‘Kids Spot’ is designed with young children and their siblings in mind.  It’s a place where FPIES is explained in simple terms and offers young children a way to understand this rare allergy and help a loved one suffering from it.  It’s also a place where kids can just be kids, a fun interactive way to see that they are not alone.

“FPIES is a diagnosis that affects the whole family,” says Foundation Co-Director Amanda LeFew.  “Meal time can be turned upside down, new snack and eating restrictions may be placed on older children, and social engagements where food is present could be limited. In some cases FPIES symptoms continue beyond the toddler years and we feel it’s important for these children to know there are others out there like them. The ‘Kids Spot’ is designed to be a safe haven for these families looking for ways to teach young children about FPIES.”

FPIES is a rare and often difficult diagnosis. It is a delayed food allergy affecting the gastrointestinal tract, typically diagnosed in infants and young children. Classic symptoms of FPIES include profound vomiting, diarrhea, and dehydration. These symptoms can cause severe lethargy, change in body temperature and blood pressure, and often lead to hospitalization. Unlike typical food allergies, symptoms may not be immediate and do not show up on standard allergy tests.

Visiting the ‘Kids Place’ you will find:

●     What is FPIES to me?  A glossary of FPIES terms with easy ways to explain what is going on to a young child

●     Resources for school age students - including vital information for putting a Section 504 plan in place to keep your child safe at school

●     Supportive Siblings - an area designed with brothers and sisters in mind.  An FPIES diagnosis can leave these children wishing they could help and understand more about what is going on

●     Interactive support just for kids - Your child can fill out and share our “FPIES is Rough, but I am Strong” mini-book to chart their FPIES journey.  FPIES children and their siblings are also encouraged to share art work on our Brag Board.  Food Allergies can’t curb these budding talents!

Even young children can help spread FPIES awareness and help others see that FPIES is only a diagnosis, not a definition.

This post was written by the Executive Board of The FPIES Foundation 

A Roaring Good Time! FPIES Families meet at Boston's Franklin Park Zoo.

Families living with FPIES were offered a rare treat in Boston, the chance to meet each other face to face and ask Allergy experts questions about the latest research and treatments available!

 

Boston Children's Hospital Hosted the event on Saturday, September 28, 2013.   It was free to any family with a child suffering from food allergies.   More than 300 families registered for the event and rare allergies such as FPIES and EOE were highlighted alongside the more common IgE-mediated allergies.

The FPIES Foundation table was a busy and popular meeting spot! The Foundation is thrilled at the response and enthused at how many families stopped by to say hello and introduce their little ones. It is also rewarding that many people from the food allergy community who never heard of FPIES before stopped by our informational table to learn more.  Amanda Lefew, Co-Director of The FPIES Foundation, was on hand to distribute informational packets with Label Reading Tutorial, Baking and Substitutions list, and flyer's...all available for reference and print out on the Resources page of the website.

We also loved learning from some of these other organizations like "No Biggie Bunch" and "Allergy Home" and encourage you to also check them out!

 

Medical Professionals from Boston Children's Hospital Food Allergy program spoke throughout the day.   Dr.John Lee and Tara McCarthy MS,RD,LDN of The Foundation's Medical Advisory Board hosted talks and answered questions. 
 

The best part of the day was the pure joy on the children's faces.  One mother told us her 3yr.old didn't believe other children had FPIES and that is why she wanted to bring him out.  Many families ended their day together on the zoo's playground, enjoying chatting and watching their children play and run around.  A moment where kids were just kids, and families realized they are not alone.
 

This article is written by Victoria Warren.  Victoria is a television news reporter for the NBC affiliate in Boston, WHDH-TV.  Victoria is a parent volunteer with The FPIES Foundation Volunteer Advisory Board.  Follow Victoria on twitter @VWarrenon7.