Monday, December 3, 2012

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

1 comment:

  1. Thank you so much for writing this! My own daughter is severely limited in foods at 14m has only one safe food and will rarely eat much of it, other than elemental formula. I've definitely been aware of the need to keep her orally stimulated. Although she has NO problem chewing on toys or anything else she can grab, she did have issues actually chewing food prior to having reactions. We've found she actually "craves" to chew on things but is averted to oral stimulation by touch or instruments to a point. She also constantly seeks our paper/cardboard items to eat (you can imagine how hard it is to keep these items away since they are seriously everywhere). I am hoping as she grows she will tolerate other foods, but I'm grateful that you posted on the importance of involving babies at meals and things. We often find ourselves eating in "shifts" so one of us can occupy her. She is not thrilled to be with us and not eating. Thanks again!