Thursday, May 4, 2017

A Mom-Inspired Food Allergy Journal

Here, at The FPIES Foundation, we love food journals!  You can find a page in the FPIES toolbox dedicated just to food journals and we are inspired everyday by the food journals you have created and have shared with us.  We have shared designs in the past, you can revisit those in this blog post FPIES Tools: Food Journal's for Food Allergies. Today, we share with you another amazing design. 

Inspired by her daughter and frustrated by the lack of food allergy journals specific to her journal needs, Maria, a mom of a child with FPIES, designed her own food allergy journals.  Maria has given us the opportunity to share a little about the inspiration behind her design with you. 

What inspired your food allergy journals?

I am a researcher by training-- I am used to planning and recording experiments. I learned a long time ago that different ways of recording and presenting data will show different trends that will help you figure out the conclusions of an experiment. At the end of the day, that’s what we do with a food challenge: we hypothesize that our child’s body is going to tolerate a new food, we plan our experiment (amounts, frequency and form of cooking), record the results (symptoms or lack of) and draw our conclusions (they can or cannot eat the new food yet).

I tried every type of store bought planner but nothing was set up just the way I wanted. Some of them lacked space for writing symptoms because they focused on the food journal part and left little to no space for symptoms. Others made difficult to write foods and symptoms side by side, and everything together was confusing (to me). It was particularly difficult to record overnight symptoms. So I made my own.

How does this paper version differ from an online version?

This paper system is helpful for doctor visits because all of the information is together, and you don’t need to depend on an internet connection to access what you need during an appointment. 

Also, a paper system doesn’t get deleted. It seems obvious, but when your google calendars, nursing, sleeping logs and photo albums of the last four months get deleted by little toddler hands, you realize how important it is to have data in a format that cannot be deleted.  When this happened to us, all my data was supposed to be stored online, but after downloading the apps I had been using again, they weren't.  I had to face the reality of never getting my records back. Then, after this happened, we found ourselves trying to figure out which foods were causing a reaction. Losing the last four months of data was critical. I promised myself-- never again. 


What types/styles of journals do you have available?

At the moment, there are only two types:

  1.  The “Food and Symptoms Journal”, and the 
  2. “Food Challenges Planner and Tracker".  
There is also an option for a Bundle package. 
Please note that some symptoms pictured in this journal example may incorporate symptoms that may be related to other types of food allergies or may be related to other conditions.  
It is important to discuss with your child's doctor(s) any potential symptoms notable to your child's individual needs when your child is trialing a food.
What are the differences between the journals?
  • The "Food and Symptoms Journal" includes the notes/activities inserts and a summary of symptoms at the end of the month. This is offered in two formats: pre-printed symptoms (which are my personalized list) or blank listing. 
  • The "Food Challenge Planner and Tracker" is a year planner to plan for challenges and pages for writing down ideas for food challenges. For tracking challenges, you have a 24 hours/14 days tracker followed by pages to write down the outcomes. The outcomes pages are divided according to food groups. This is also offered in the two formats with pre-printed symptoms (which are my personalized list) or blank listing. 
  • The Bundle has both of the Food and Symptoms Journal and the Food Challenge Planner and Tracker plus an additional file for a Medical Information Binder which allows you to write down your notes for every doctor appointment. With the bundle, you not only get an extra file but also a discount.


You mentioned a Medical Information Binder, what do you recommend to keep in the this binder? 

I keep all of the lab work, the ER letter and notes from every doctor appointment and ER visit. One strong suggestion I have is that you write notes of any doctor visit soon after, so that you can remember what was said and what actions are to be taken.

The file for medical information and doctor visits notes has six pages and again, you can print as many notes pages as you need.

Do you recommend this for both new food allergy parents and ‘veteran’ food allergy parents? 

I think it is useful in different ways to different people. Parents new to this overwhelming syndrome have a place to start. It is easy to follow and does have clearly labeled sections, if they choose that option. On my own personalized one, there is an extensive list of symptoms, but there is still additional blank space to write down additional individual symptoms.  Parents might want to customize the symptom list specific to their child, so this is best with the blank journal option.

Both options are easy for other people that might take care of the child temporarily and are not familiar with a recording system (i.e. a nanny or a grandparent). My child's daycare has found that it’s easy enough for them to use, and it has been very useful for me to have a journal that can be used at the daycare.


What do you get when you purchase?

When you purchase either the Food and Symptoms Journal or the Food Challenge Planner and Tracker, you get the corresponding file and instructions for easy printing. If you purchase The Bundle, you get three files (the Food and Symptoms Journal, the Food Challenge Planner and Tracker, and The Medical Information Binder) and the printing instructions. I am just one message away if someone needs further help with printing!  

The “Food Challenge Planner and Tracker” file has 23 pages. You can print as many additional pages as you need.  If you printed it all at once, the Planner is 200 pages long (approximately) and it includes two pages for the activities/notes that can be printed as many times as needed (it has a faint gray line in the middle for easy trimming). I say approximately because one of the features that the journal offers is that it starts on the same month you buy it. Don’t you hate when you need a planner in the middle of the year and you have to leave blank the other half of the year? I do, and I also think it’s a waste of paper. That’s why the “Food and Symptoms Journal” is updated for every month. For example, a journal bought in April 2017 will include the pages from April 1st 2017 to March 31st 2018, plus the insert pages. Therefore, depending on how many weeks each month has, there are slightly more or less than 200 pages. 


What kind of binder do the downloads fit in to?

The Food and Symptoms Journal is best for letter size and a4 paper and binders. You can always print in a different paper size and resize the printing, although there will be some empty space at the bottom and the top. There is blank space along the inside of the pages for hole punching. I have tried the pages in a 3-ring binder as well a disc-bound system. Both work beautifully (although I personally prefer the look of the disc-bound system). In any case, a 1.75” or wider binder will be needed for The Bundle. Please note that both the a4 and letter size will need 11 discs if you choose a disc-bound system.


Remember– whether it is written in a spiral notebook or with a computer program, the key is making it work for YOU so that it can be best optimized as another tool for the toolbox.

Need more tools for your toolbox? For more tools and resources for day to day FPIES management, be sure to check out The FPIES Foundation's Toolbox today!

This post is written interview with Maria Torres, food allergy mom. You can find Maria's Etsy shop here: https://www.etsy.com/shop/MODdesignsStudio



Sunday, April 23, 2017

5 Ways to Thank a Doctor!


March 30th was National Doctors’ Day. Doctors across our country were recognized for the dedicated and tireless work they do each day. Everyday, we acknowledge and appreciate the contributions of the many great practitioners that support our children and families affected by FPIES.  We'd like to suggest some fun ways to show your gratitude down below, but first a quick word on finding a great doctor.

Because FPIES is an uncommon condition, many healthcare professionals may not be familiar with it, making it difficult to find the right doctor for your little one. That’s why The FPIES Foundation has put together our Provider Directory, a searchable database of healthcare professionals that have been recommended by FPIES families and physicians. Just enter your location in the search box to find suggestions for doctors in your area.

However, if you’ve already found a fabulous physician, here are 5 ways to thank him or her today:

1. Probably the easiest way to thank a doctor is to send them a note to let them know how much you appreciate their hard work. Just jot down a few lines on a card and slip it in the mailbox or take it with you at your next appointment. If you’d like to do something a little more fun, check out this handmade lab coat card tutorial. Or get your child involved by having them color one of these free printable thank you cards.

2. Of course, one of the best ways to thank a care provider is to recommend their services to someone you know. If you haven’t already done so, you can contact us and request that we include your doctor in our Provider Directory. Or you can write them a positive review on a physician rating website. Just do a Google search for your doctor’s name and you’ll probably find that one or more rating websites come up in the results list. Pick one and leave a review to let others know why you love your doctor.

3. You can also use social media to let others know how great your doctor is. Share your FPIES story on Facebook or another social media site and be sure to mention which doctor(s) made all the difference in your child’s life. Use #NationalDoctorsDay and link to your doctor’s social media account if they or their office has one.

4. Everyone loves a treat, so why not take a yummy surprise over to your doctor’s office? This blog suggests donuts and offers a printable gift tag that you can print out to accompany your gift. If your child has a favorite FPIES-friendly snack that you think your doctor might enjoy, you could also share a plate of that along with a thank you note.

5. If you’d prefer a non-food gift, consider sending some flowers over to brighten your doctor’s day, as well as his or her office. You can either send the real thing or help your child make one of these adorable paper plate flowers.


While a visit to the hospital or doctor’s office is often an unpleasant experience, finding a skilled and compassionate doctor to help care for your child is a blessing, especially when that child has been diagnosed with FPIES. Be sure to let your care provider know how much you appreciate them.


This post was written by FPIES Foundation volunteer Aubrey Fredrickson.  Aubrey is a freelance writer and mother of two. Although not personally touched by FPIES, she is grateful for the opportunity to be involved with the families and volunteers of the FPIES Foundation.

Monday, April 10, 2017

Jeanelle Boyer, PhD and an FPIES Research Update

Have you ever looked back upon your life and been in awe as to how everything seems to have worked out for some higher purpose? I am still amazed at how many of my life choices were, unknowingly, preparing me to be the mom of an FPIES baby.  A PhD in nutrition, years teaching microbiology, a perfectly timed conference on the human microbiome, and a faculty position in Health Science at Keene State College were all invaluable as I struggled to find ways to help my little girl.  But, my daughter truly has been my greatest teacher.  She has brought me so much joy and has led me on the most amazing journey into health, wellness and all things microbiome.

Just over three years ago, my healthy, happy baby was born by emergency c-section.  She slept wonderfully, was breastfeeding like a champ and had that super soft, pink baby skin.  Unfortunately, all of this changed suddenly after a round of antibiotics for an ear infection at 6 weeks old.  All of a sudden, mild “spitting up” turned into severe GERD, she squirmed and wiggled all night unable to sleep, and she developed eczema on her entire body.  And the diapers….I will just say that they were not pretty!  It took a while, but we soon realized that she was allergic to everything that I was eating.  After months on severe elimination diets, we eventually switched to a hypoallergenic formula, and I finally had my happy baby back!  Normal diapers, soft clear skin, and comfortable sleep all night long!  Eventually, Ella was diagnosed with FPIES and we have been slowly trialing foods for the past three years.  It took her awhile to tolerate anything, but overtime she has gained foods and is now happily eating about 30+ foods. 

 I was exposed to antibiotics during pregnancy and during childbirth, and Ella was exposed as an infant.  Although not all FPIES parents have a similar story, I was amazed at just how many other parents did relate stories of antibiotic usage and concerns about “gut health”.  From all of my knowledge about the critical role that the microbiome plays in health, I couldn’t help but wonder if the microbiome was playing a role in her FPIES.  Luckily, I was in a position to actually test this hypothesis as part of my scholarship at Keene State.  Thanks to funding from the FPIES Foundation, Keene State College, NH-INBRE, and Ubiome and a wonderful collaboration with Dr. Yuan at Masss General, I have been able to design two studies that explore the connection between the gut microbiome and FPIES.

We have billions of bacteria living all over us with an especially high concentration of bacteria in our gut.  Recently evidence has been accumulating rapidly suggesting that these little microbes play a huge role in health and wellness.  Scientists all over the world are exploring the connection between the gut microbiome and allergy, autoimmune disease, GI disease, cardiovascular disease, and even neurological disease.  It is truly amazing!  Unfortunately, we have been living in a society that is pretty hard on our microbiome.  Changes in diet, an increase in antibiotic usage, less time spent in nature, and the abundance of antimicrobial compounds in the environment, have all led to decreasing diversity in the gut microbiome.  The full extent of this problem is still being studied, but many researchers believe that this is causing an increase in inflammatory and allergic disease around the world. 

So, where are we now? With the help of two wonderful Keene State students, I have collected survey data and microbiome data from a group of infants with FPIES and group of infants that do not have any allergy.  We are in the process of analyzing the microbiome data, but are already seeing some interesting trends in the survey data.  For example, antibiotics usage was higher in FPIES infants compared to allergy-free infants, and interestingly, maternal antibiotic usage during pregnancy was also higher in the FPIES infants when compared to the allergy free babies.  

As we continue to analyze data from the first study, we have also launched a second study that looks at older children with FPIES.  FPIES families often hear that many kids outgrow FPIES around age three.  That is the case for many, but not all.  Previous research has shown that the infant microbiome tends to become more “adult-like” around the age of three.  I wondered if this shift in microbiome, might explain why some kids outgrow FPIES.  However, if some kids had a severe dysbiosis or some kind of opportunistic pathogen in the gut, perhaps they would not outgrow FPIES as easily.  To test this hypothesis, we have just launched a study to compare the gut microbiome (both bacterial and fungal) of children aged 3-9 with FPIES to kids who have outgrown FPIES.  To complete the study we will also be comparing both groups to allergy free children.  We are in the process of recruiting participants now, and are very excited to see the results of both studies!

As is the case with a lot research projects, we could not do this work without your help!  I am incredibly grateful for all of the support that I have received from the participants in both studies…but we still need more participants for the FPIES children study.  If you are interested in helping out with this research, see below for some ideas.

HOW THE COMMUNITY CAN HELP:
1. Participate in the project- if you have a child between aged 3-9 years old that has been antibiotic free for the past month and either 1) has FPIES 2) has outgrown FPIES or 3) is allergy free, then you could potentially join the study!  Participation involves taking one or two stool samples from toilet paper using a provided kit and completing an online survey.
2. Spread the word- share with friends and family who may want to participate or share FPIES awareness.  Again, we need both FPIES and allergy free kids, so share with everyone!

Many thanks and best wishes to you all! I am confident that together we will figure out this crazy disease!

Please contact Maddy Carroll at madalyn.carroll@ksc.keene.edu. Or, you can also contact Jeanelle with questions at jboyer@keene.edu

This post was written and submitted by Dr. Jeanelle Boyer, who is currently researching the microbiome in the gut of infants affected by FPIES at Keene State College. To learn more about Dr. Boyer's background and her previous research work, please watch her webinar from FPIES Global Day 2016.



Sunday, March 5, 2017

10 Winter Crafts for Hospital Stays

Hospital stays can happen all too often for many families living with FPIES and we know it can be difficult to keep your little one occupied. FPIES parent Zack Skrip gave us some really great ideas back in June on Things to do in the Hopsital. Expanding on one of his suggestions, I’ve put together a list of simple crafts that you and your child could do while stuck in the hospital this winter.

To make it as easy as possible, I have tried to limit the crafts I’m listing here to ones that can be done with only a handful of supplies. Some of the examples I’m listing do use other items, like glitter or googly eyes, but for the most part they can be done with only the following craft supplies:

  • Paper plates
  • Cotton balls
  • Construction paper
  • Glue
  • Scissors
  • Crayons, markers, or colored pencils


1. Cotton Ball Pictures
This is a fun tactile activity that you can do with some construction paper, glue, and cotton balls. Either draw or cut out a shape and let your child have fun gluing cotton balls to fill in any white spaces. There are tons of possibilities, but for winter time, check out these cotton ball snowmen and penguins

2. Foam Cup Snowmen
For this simple craft, just grab a disposable cup and turn it into a snowman with some construction paper decorations. If you didn’t bring your own cups, there’s a good chance you can find one in the hospital.

And if you can wrangle up six disposable cups and your child is feeling up to a little competition, consider a friendly game of Snowman Slam. Just arrange the decorated cups into a pyramid and take turns trying to knock them down using a rolled-up pair of socks.

3. Paper Heart Penguin
This adorable paper heart penguin requires only glue, scissors, and construction paper. The tutorial suggests using googly eyes, but if you don’t have those in your hospital craft kit, you could easily cut out paper eyes or just draw them on.

4. Paper Snowflakes
If your child is old enough to use scissors on their own, paper snowflakes are probably one of the easiest winter crafts you can do.

5. Paper Plate Crafts
With a paper plate, a pair of scissors, and something to color with, the possibilities are endless! Here are some cute winter themed choices: polar bear (uses cotton balls), penguin, snowflake, and snowman.

These paper plate superhero masks aren’t winter-themed, but as a mama with two little boys who are crazy about anything superhero-related, I couldn’t resist adding it in. There are lots of other paper plate mask ideas out there, as well, so you are sure to find one that your child would enjoy.

6. Paper Plate Winter Hat
Here’s one more paper plate idea. You might not be able to actually wear this paper plate hat, but it looks like a lot of fun to make! Just cut a paper plate in half, glue on some cotton balls and decorate it as you please.

7. Ripped Construction Paper Art
You can create some fun pictures with ripped paper and glue, including this cute snowy owl. Even if your child is too young to assemble the pieces into a more complicated shape, they will likely still enjoy just gluing it all together to create their own unique artwork.

8. Paper Plate Valentine Holder
With Valentine’s Day coming up, I thought it might be fun to include a few holiday themed ideas to round off this list. Here’s one for a cute paper plate Valentine holder. The tutorial uses staples to hold the paper plates together, but you use tape or glue as well. Once you’ve got a heart shaped holder, let your child decorate it with crayons, construction paper shapes, or whatever else you have handy!

9. Heart Wreaths
This paper plate heart wreath would be an easy and fun way to make the hospital seem a little more festive. It would also make a fun Valentine’s gift for someone special.

10. Valentine’s Day Card
Your child might also enjoy making some Valentine’s cards for friends, family members, or even the nurses and doctors there at the hospital. These ASL I-Love-You and I love you to pieces cards can both be done with nothing but construction paper, glue, and a pencil.



We hope you don’t have to spend too much time in the hospital this winter, but just in case you do, consider putting together a simple craft kit that you can grab on the way out the door. And if you and your little one do create any works of art in the hospital, we’d love to see them! Send us your pictures to: contact@thefpiesfoundation.org. 


This post was written by FPIES Foundation volunteer Aubrey Fredrickson.  Aubrey is a freelance writer and mother of two. Although not personally touched by FPIES, she is grateful for the opportunity to be involved with the families and volunteers of the FPIES Foundation.

Thursday, February 2, 2017

10 Things You Can Do to Spark the Conversation About Rare Diseases

The FPIES Foundation has joined forces with 30 million Americans and health care advocates around the world for Rare Disease Day® on February 28.  Rare Disease Day is an annual awareness day dedicated to elevating public understanding of rare diseases and calling attention to the special challenges people face.

For this 10th Rare Disease Day, we compiled a list of our top 10 things you can do to help spread awareness this Rare Diseases Day: 

#1. Share a Rare Disease Fact on social media. 




#2. Print and color a rare disease day coloring page and share it with facts about FPIES in your community or on social media. 

#3. Share a medical journal article on FPIES research from our Medical Literature page. 

#4. Change your profile and banner pictures on social media to show your support. 
#5. Challenge family and friends to join in raising awareness and share our “FPIES: Now you Know video”.

#6. Learn and share about the importance of patient registries and their role in  the advancement of understanding of rare disease with our "FPIES At a Crossroads" Global FPIES Day webinar. 

#7. Host an awareness event in your community. Not sure where to start?  
#8. Tell Your Story

#10.  Follow us on social media for our daily updates on staying involved!   

For more information about Rare Disease Day in the U.S., go to www.rarediseaseday.us.  For information about global activities, go to www.rarediseaseday.org and www.globalgenes.org.  

This post was written by the FPIES Foundation Board.