Tuesday, June 28, 2016

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.

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 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:

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.

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 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.

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

Friday, June 3, 2016

Helping Families Navigate the Emergency Room with a Rare Disease

FPIES Foundation Joins in #RareErChat on Twitter

The FPIES Foundation joined as the National Organization forRare Diseases (NORD) and Texas Children's Hospital hosted a Twitter Chat aimed at helping navigate emergency room visits with a Rare Disease.

NORD started the chat with some statistics that show rare diseases aren't that rare. They say 1 in 10 Americans are affected by some sort of rare disease. A rare disease is one that affects fewer than 200,000 Americans.

Topics discussed included challenges children face in the emergency room. Many rare disease communities, including the FPIES community report struggling with doctors and nurses not familiar with the diagnosis.

Suggestions for parents include working with medical professionals on an ongoing basis to increase understanding and bringing information on a rare disease from a trusted source. For FPIES families the Foundation provides an emergency plan on our website. We also now offer the FPIES Foundation app free to download.

The discussion also gave tips on making children comfortable in the emergency room - having an ER bag at the ready filled with comfort items and medical records. Many hospitals also have a child life specialist you can ask for to help comfort and engage your child.

Other suggestions:
  • bring a photo of your child at baseline
  • ask ER staff to phone your pediatrician or lead specialist
  • inform your child's daycare or school of your emergency room preference

To see the complete TweetChat search #RareErChat on Twitter.

Follow on Twitter:

This article 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

Friday, May 13, 2016

The Miracle of FPIES

Every family is unique and weaves an important piece in our overall understanding of FPIES as well as the impact-- medical and non-medical-- this rare diagnosis has on our families, children and professionals. As you read the story that follows, please remember that though your family's story may differ in some ways, we as a community all strive to make each story heard in order to raise awareness to all points on the spectrum of this challenging condition. If you wish to share your story, please check out our inspiring families page and complete the form to submit your story.  We want to thank the community for all that you do to support and empower one another day in and day out, no matter where our own family's journey finds us. Remember that your greatest gift to each other and to our community can be your voice.

This post is adapted and shared with us from a blog post originally appearing on 
Our Stable Table Facebook page by Carrie Saum

Carrie and Echo

27 months ago, our world changed dramatically.

We discovered that our sweet son, who was just 8 months old at the time, had a rare condition called FPIES. At first, we didn't understand what that meant.  We knew that it was a food allergy syndrome. We knew there were foods that would make him sick. We knew he might or might not grow out of it. And in the back of our minds, we carried with us the knowledge that he there could be serious consequences from reaction complications.

As our knowledge grew, so did our fear. He vomited to the point of shock, twice. His blood pressure plummeted and he lost consciousness. We finally pulled all food (formula/breast milk being his sole nutrition) when he was diagnosed because he threw up every food we gave him, no matter what form, always in a 2-3 hour window, and nobody had answers about why he had this or how to fix it.

We still don't know.

I dug into every piece of research available. I combed forums, Facebook pages, blogs, and medical journals. I spent HUNDREDS of hours pulling information and trying to formulate a plan to help heal my baby son. His doctor, who is a remarkable human and care provider, was at a loss. She only knew of the condition because of a friend, and admitted she knew very little about it and how to treat it. She supported our decisions, chimed in with information when she had it, and helped us brainstorm how to keep him healthy and growing and on target for reaching developmental milestones. No specialists in our area knew anything about FPIES, or how to treat it. When it came right down to it, we were on our own.

In public, we couldn't let our son out of our sight. We couldn't allow him to roam when food was around, which was always. We made everyone wash their hands and faces before touching and hugging our very reactive toddler. We became human helicopters and even so, our son still suffered. His skin erupted and oozed, his diapers filled with blood, his stomach emptied itself until there was nothing, not even bile. Food was a looming, thieving threat, when it should have been life-giving.

In addition to solid information and helpful research available to us, groups of families who also dealt with this disease rose up and reached out their arms. They welcomed us, a warrior tribe of virtual strangers, into their fold. They vented, cried, rejoiced, and helped us fight our way through the very hardest and darkest days.  They offered advice, compiled their own research, encouraged me to follow my intuition to give my son an extended gut rest in hopes of healing enough to tolerate food.

These warrior parents told me how to start an elimination diet that helped me clear reactive foods from my breastmilk. They encouraged me when I wanted to quit, and offered empathy when I was up all night for a week with a sick, reactive baby.

Our little corner of the internet, Our Stable Table, came from all of that heartache. It came from the sleepless nights, a sick baby for which there was no real help, the 21 months of exclusive breastmilk pumping, the 12 months on a strict elimination diet,parents and caregivers who did not quit and would not let me quit, and the place where hope is completely buried beneath heartache and debilitating fear and numbing exhaustion.

It is a miracle that we did not break.

It is a miracle we are intact.

It is a miracle we are still surviving.

As any parent of a child with extra or special needs will tell you, FPIES is life-altering. It changes your world in profound ways you cannot understand until it happens to you. FPIES has robbed us of health, sleep, finances, emotional stability, and almost our marriage. But it has not taken our son. It has given us an army of families who understand and help. It has given us purpose and deep empathy. It has given us gratitude for every breath, every bite of food, and every single day we get to be on this earth.

In one breath, I say to you all, our son is a miracle, just as much as FPIES is our tribulation.

Our babies are miracles. Our ability to continue fighting for them is a miracle. And we never, ever get to forget that.Even though we are drenched in vomit, we are covered in strength. FPIES will not win, it will be our greatest teacher of perseverance, hope, wit, and tenacity as parents and families. 

This is what FPIES awareness looks like. Vomit and miracles. Hope and community. You, dear families with children with extra and special needs, are ALWAYS welcome at our table.

Echo, Carrie, and Lance
Carrie, Echo, and Lance 

Carrie is an author, recipe creator, food lover, and loves connecting people in her online community,www.ourstabletable.com. With a great sense of humor, warmth, and vulnerability, Carrie brings genuine reality to the Internet, along with tasty food and slightly inappropriate jokes. After receiving her paramedic medical training, Carrie spent a decade abroad and in the U.S. in the non-profit medical sector, before venturing into the world of Ayurveda and integrated health in 2011.
Carrie uses her skills mostly for good these days while caring for her son with extra needs and helping clients from all over the world meet their health goals. She loves spending time around the table with her family and friends. She lives in Portland, Oregon.