Update 6/3/25: Addyson had her follow up with her GI & Dietician today & due to her not taking in enough calories by mouth they are talking about removing her ND tube & placing a G-tube which we would have to travel for & stay in hospital for a few days. We have struggled to find a nutrition supplement shake that Addyson likes & can tolerate, if she is able to find one she can consistently drink then the tube would come out. We will know more by the end of the week.

Help Us Support Addyson On Her ARFID Journey

Around the end of December 2024 early January 2025 our 12yr old daughter Addyson was eating steak like she has done plenty of times before when she swallowed a piece wrong and ended up choking but thankfully was able to get it down. That traumatic experience caused Addyson to be afraid of eating with the fear of choking again & also triggered her anxiety. At first she would eat yogurt, ice cream & chicken broth since they weren’t solids & could go down easy but then she got to the point where she wasn’t eating anything & barely drinking. In just a couple of weeks she had lost 15 lbs !! We had taken her to her pediatrician & she just ordered blood work and said ill see you back for a follow up in a month. We were not waiting a month for answers!! So we decided to take her to the ER , well the Dr. there ran some tests and said “In our eyes she’s healthy , she can go months without eating” . Our once happy, energetic, softball, gymnastics loving girl was steady losing weight, scared to eat & no one would listen or help!! After 2 more hospital visits at a different hospital we finally found a Dr. who listened & admitted her to Children’s Hospital.

Addyson was in Children’s Hospital for a little over 2 weeks. After a couple of days being there they decided she would benefit from a feeding tube. Our poor little girl had a rough time with the placement, they had 2 failed attempts bedside with the tube getting coiled around her tonsils & then again in her stomach. We decided due to her anxiety & the traumatic experience with it getting coiled that it would be best to sedate her and have the assistance of IR (X-ray team) to make sure it was placed correctly. Thankfully it was finally able to be placed and Addyson started getting the nutrients she needed!! While there Addyson was seen by a GI, Dietician, Therapist, Phyciatrist, Physical & Occupational Therapist. She was diagnosed with ARFID (Avoidant Restrictive Food Intake Disorder), Anxiety & Panic Attacks.

ARFID is a new disorder classified under eating disorders but it’s technically not. People with ARFID are unable to eat certain foods & may be extremely limited to what or how much they can eat. They can also struggle with many aspects of life & may find it difficult to be around food, eat in front of others or even watch people eat. It can be a sensory issue where the person is unable to tolerate the texture of foods & develop “safe” foods which can be very specific & can change over time out of nowhere. ARFID is often caused by some kind of trauma around food in Addyson’s case , choking. Food then feels “unsafe” and severely affects a persons mental & physical health.

Addyson has been home from the hospital for a couple of months now & is showing progress some days better than others, she still has to supplement some of her nutrients with a feeding tube. She sees a therapist weekly & we travel a little over an hour weekly to see her feeding therapist, which can be hard at times due to her anxiety & panic attacks. Addyson has a long journey ahead of her but she is determined to get back to eating like she was before & being her energetic self :)

Due to everything that happened my husband had to switch jobs to somewhere that would work with him on his schedule so he could be home on the days we have to travel to help with our 2 younger children. With switching jobs he had to take a pay-cut which has really affected us financially. We are just looking for a little help to get us all caught up on our bills, help with protein powders/shake Addyson will tolerate that insurance doesn't cover & help with gas on the days we have to travel. Knowing all our bills are caught up will take a tremendous amount of stress off of us while we are focusing on helping Addyson get better & taking care of her little brothers :) If you aren’t comfortable donating on GoFundMe our cash app is $tiffjones0911 & paypal is Tiffany Jones . If you read this far thank you for reading & have a blessed day :)