Food Free Birthday Celebrations!

Your little one has been diagnosed with FPIES (or other food allergies), their birthday is approaching and you don’t have enough safe ingredients to make a cake.  What can you do?  There are so many fun options!! We wanted to share a few of the ideas that parents have done to help inspire you. 

Gift Box Surprise Cake

This is a cake your little one can really ‘tear" into!

Supplies needed:

• Stacking size boxes- almost anything will do, shoebox, Kleenex boxes, gift wrap boxes, or you can find at craft stores that sell plain hat/treasure boxes that work great!  You can get circle or square/rectangle!  (note- rectangle is easier to wrap!)
• Tissue or wrapping paper – this will allow them to rip into their cake, but be careful that your child does not eat the paper!  If you are concerned that your child may eat the paper- you can substitute for fabric.
• Tape or ribbons- to secure paper or fabric to boxes.
• Decorations: stickers, toys, puffy letters, etc…
• Small tokens/treasures for inside the boxes *optional

Directions:  Fill boxes with token, if desired.  Then, wrap boxes (empty or with a token/treasure/gift) with wrapping/tissue paper, or fabric.  Secure with tape and/or or ribbons.  Next, decorate paper if desired with stickers (spelling out their name, writing happy birthday, etc), stack toys on top or around towers of cake (these can match your theme or be something special to save for years to come).  Stack boxes to give look of a tiered cake!  Have fun with it!

Fabric Quilt Cake

The fabric from this cake can be made into a special blanket for a new tradition!

Supplies needed:

• Fabric
• Stacking size boxes- almost anything will do, shoebox, Kleenex boxes, gift wrap boxes, or you can find at craft stores that sell plain hat/treasure boxes that work great!  You can get circle or square/rectangle!  (note- rectangle is easier to wrap!)
• Ribbons /fabric tape or fun tak – to secure fabric to boxes.
• Decorations: *optional
• Small tokens/gifts for inside the boxes! *optional but this can be a fun way of presenting the presents!

Directions:  Fill boxes with gifts or tokens/prizes.  Then, wrap fabric around boxes, secure with ribbons, or fabric (or strong) tape.  Stack boxes and decorate with toys around, or ribbons on fabric, etc.  Stack boxes to give the look of a tiered cake.  Have fun with it!

Surprise Party Cake Slices

This cake can be ordered and is realistic and fun!

Supplies needed:

• This cake can be ordered from:  The Oriental Trading Company (Birthday Cake Slices Treat Boxes).  Be sure to allow time for shipping!
• Tokens or small gifts/surprises for insides boxes.

Toy cakes

(can purchase in store/order online)

For a first birthday:

• Laugh and learn singing scoops ice cream cone
• Alex Jr Patty Cake (nesting cupcake, plush)
• Fisher price servin' surprise birthday set 
• leapfrog counting candles birthday cake
• Gund first birthday plush playset 
• Alex jr Stack a Cake Set 
• Haba soft toys Set of 6 Piece cake

For toddler and preschool kids:

• Smart Snacks Stack and count layer cake 
• Lego Creative cake duplo set 
• Plan Toys Planactivity Decorate a cake set 
• Small world birthday cake set  
• Melissa and Doug birthday party cake 
• Melissa and Doug "bake" and decorate cupcake toy set 
• Melissa and Doug layer party cake 
• K's Kids My Singing Birthday Cake

For three and up:

• Squinkie Girl Birthday Cake 
• Birthday wooden rings (with decoration accessories)-- many different themes

Please visit our website for additional resources on Cooking and Nutrition and Food Free Festivities!

Thank you to parents Joy Meyer, Jill Terwey, and Heather Hughes for sharing their birthday cake pictures pictured in this post. 

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

FPIES: Avoiding and Addressing Oral Texture Aversion

Avoiding and Addressing Oral Texture Aversion

Written by: Annette Mestern, OTR/L

I am the mother to a two year old with Food Protein Induced Enterocolitis Syndrome (FPIES). I am also a Pediatric Occupational Therapist (OT). When my daughter was 10 months old her allergist recommended a period of time without any food and just Neocate formula to heal her system following several FPIES reactions. After just one month without food I noticed that my daughter was no longer mouthing her toys and was avoiding oral exploration with toys. Having had several hours of “feeding therapy” type education due to my career I knew that this likely would lead to texture and food intolerance when it was time for her to eat again. From working with several children with oral intolerance I knew I must spring into action and fast. Luckily due to my education I knew just what to do.

I realize that a parent without the education I have likely does not know what to do in this same situation and then has to deal with the heartache of finally being able to feed his/her child only to find that the child gags/spits out food, or will only tolerate purees and no textures. This is highly preventable. I would like to share some ways to prevent this or if it is happening address this issue. The following is a list of what I did for my daughter:

* I always supervised my daughter closely when she was using these materials *

1.     I provided her with continued opportunities to chew and mouth textured materials. Because she already started to become aversive to this I started by having her accept the materials on her lips and in the front of her mouth, then moved to the inside of her cheeks and tongue. This takes time and patience and acceptance of the materials in the mouth does not generally happen overnight.

The following materials can be ordered online and are great for this purpose; Chewy Tube, and Ark Grabber. Besides increasing oral tolerance for texture these materials when chewed strengthen the jaw and prepare it for later chewing of food. A nuk brush can be used – roll along the inside of each cheek and along the tongue. Helps to sing “row your boat” while you are doing it. A nuk brush can generally be found at Babies R Us or similar baby store in the toothbrush section. I recently purchased one in a set with an

Infa-Dent Brush, and first toothbrush. An Infa-Dent Brush fits over an adult’s finger and can be used to massage an infant’s gums.

2.     I provided her with vibration to the inside of her mouth. Vibration desensitizes the mouth if sensitive and also can increase awareness inside the mouth for those kiddos who stuff food. Vibration is great because it can serve either purpose.

The following materials work for this purpose; The Z-Vibe with Probe Tip. It is recommended that this tool be used with supervision of an occupational or speech therapist. It is a good idea to call your local Early Intervention to see if your child would qualify for help from a therapist. Oral Jigglers can be used for this purpose as well.

*I only used the items with long handles such as the Z-Vibe  and Nuk Brush with my daughter when she was strapped in her high chair. I knew she should not be crawling or walking around with those items as she could fall and they could be jammed into her throat. I kept them away and out of her reach when I was not using them with her.*

A great item that my daughter eventually enjoyed and could use daily on her own was the Infantino Vibrating Teether. I just bought this at my local store. I have bought these for my daughter and the children I work with at the grocery store, Baby Depot and Babies R Us. I find they are cheaper at the stores than online. I had to ultimately buy a second one for my daughter as the vibration does not last very long. However, this was a great tool as I could keep it out for my daughter all the time with her other toys so she could grab it whenever she was playing. There is a The First Years Massaging Action Teether that can be used as well.

3.     I had my daughter sit with myself or the family in her high chair for meals. This is usually when I gave her, her Z-Vibe so she could somehow orally participate in meals. I also had her eat frozen Neocate by spoon or fed her ice chips to work on her spoon skills and oral acceptance of a spoon. I will admit a lot of the time it was just so sad for her to sit there and not to eat, but I realized that she enjoyed being with her family at meals. It was good for her to see food, see people eating and experience the social interactions that come with meal times. As hard as this was for her family members, it worked to her great benefit when it was time for her to eat again.

4.     I provided my daughter with these materials daily. It may feel like a lot to do this daily, but if you are doing it at mealtimes when you would normally be feeding your infant/toddler, than it works.

When my daughter was 14 months old and allowed to eat again, she was happy to do so and she had no oral aversions. Every food we gave her she would at least try and was a happy eater. She also within a few weeks of eating began using her spoon independently.

My hope is that the information I provided will help you to help your child to become a happy eater and enjoy meal time. Our little ones, at least my little one, had so much negativity and suffering when it came to food, that I am thankful I had the education to help her so that she can now enjoy her food or the several that she can eat.

Listed are the techniques I used with my daughter, but should not replace any guidelines specific to your child provided by his/her pediatrician or therapist.

Annette Mestern is an OTR/L and the mom to a sweet two year old with FPIES

Copyright© 2011, The FPIES Foundation

"Alone we can do so little; together we can do so much." ~ Helen Keller

At The FPIES Foundation, we believe that forming strong bonds with our local and global communities means greater strength for supporting our children and families. We believe that it is only by partnering with our community that we can effect change. Together, we can make a difference in the lives of FPIES children and their families.

But how can you make a difference? How can you help us to build this foundation of resources and support?

The FPIES Foundation recognizes donations of time and talents!  The talents of one mother whose daughter has FPIES enabled us to release a video on YouTube for Food Allergy Awareness week 2012-- thank you, KatieLou Photography!  Beautiful photographs designed specifically for our new website by Photographyby Sarah M, capturing the essence of the lives of those living with FPIES, were also contributed by a mother whose daughter has FPIES.

The FPIES Foundation blog and website aim to continue to put a voice to this rare allergy. By writing and sharing your story for the Inspiring Family Stories page on the website, you can help contribute to that voice. Putting a story behind your experiences helps others to not feel so alone and can inspire others to reach out as well!

If you are a crafter, our Hugs for Heroes program continues to accept donations of your talents. Your creations can give comfort to a child with FPIES!

Let's continue to build this foundation of caring together! The FPIES Foundation is an entirely volunteer-based organization and does not keep any paid employees– all manpower is unpaid. Any efforts to support the activities of The FPIES Foundation are enormously appreciated, as we strongly value anyone reaching out to FPIES families. 

The journey with this diagnosis can be daunting but the connection to one another can certainly help the load that we all carry to feel a bit lighter. When you are ready and able to reach out, we have opportunities available to suit various interests and availability. Contact us at contact@thefpiesfoundation.com for more information-- we can't wait to hear from you!

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