Brielle was in a partial hosptialization program for the past month at Children’s Hospital in Plano. They have an inpatient psychiatric program for eating disorders at this facility. Yes, my five year old has an eating disorder, but she is finally eating and is doing so much better than she was a month ago! She has a condition called ARFID (Avoidant Resistent Food Intake Disorder). It basically means my child refussed to eat. We were dependent on pediasures, about 4 a day before she was admitted because she would not eat. They say “a child won’t starve themselves, they will eventually eat when they are hungry enough”. These people have never encountered a child with ARFID. These kids will starve themselves. My daughter was diagnosed with malnutrition when she was admitted. Most of the other kids came directly from hospital admission at hospitals elsewhere (including other states) because of their failure to eat. The kids that came from other hospitals still had nose tubes (NG tubes) in place to get their food. What is amazing is that these were not handicapped children in wheelchairs with severe mental impairments. These are seemingly normal kids who developed a phobia or fear of food. The aversion is so real and strong that they will stop eating and fail to thrive.
Brielle’s aversion to food started as a baby. She has always had GI issues. We didn’t know the severity of it until recently. But she has been seeing GI specialists since age 2. We have the GI issues under control with lots of medication. Praise Jesus my child is finally pooping every day on a toilet of her own free will! No more diapers or pull-ups!! Having a child who can’t/won’t poop is one thing, when it causes them to stop eating it becomes down right scary.
Days before her admission I broke down. Let me tell you, I am not the sobbing, break down type. I think it had been years since I last cried and felt so hopeless. I was unable to get my child to eat. I don’t mean she wasn’t eating her fruits and vegetables or that she was just picky. I mean she wouldn’t eat anything. I offered her every food under the sun, including junk foods and fast foods. What kid won’t eat chips, cookies, candy, or cake? Mine. I tried to bribe her with new toys, fun activities, even a trip to Disney World (and I meant it too). Nothing worked. Her condition got worse, even though her GI issues were under control. She associated food with pain, so she wanted nothing to do with food anymore. We needed her to relearn how to eat and actually enjoy food. Easier said than done.
Thank God for the program at Plano! https://www.childrens.com/specialties-services/specialty-centers-and-programs/psychiatry-and-psychology/conditions-and-programs/eating-disorders
I searched high and low for a program anywhere in the country that would treat a 5 year old with ARFID. This hospital is one of the few that actually treats these young kids. We are so blessed that it was about an hour from us and not another state away. Many of the parents of kids in the program were from out of state and had to stay at the Dallas Ronald McDonald house, leaving other kids behind for a month. It was not easy doing a full month of trips to Plano every morning and again every afternoon to pick her up (that’s how partial hospitalization works). However, we are so thankful that the hospital was daily driving distance for us. I had researched ARFID programs in Houston and California (even spoke with them on the phone), but they didn’t take 5 year olds. There were lots of young kids in the Plano program, including another 5 year old.
They do a wonderful job treating ARFID patients at this facility. Our daughter is now eating 3 meals and 3 snacks a day. She also now only has 1 pediasure a day! In her month in this program she went from 40 lbs back up to 45 lbs. There is no force feeding in this program. They have a point system and the children get privileges and fun stuff to do based on their eating and behavior. Every meal, snack, and behavior goal are charted. We will continue charting at home too, as this system is working well for Brielle.
Brielle participated in intensive therapies all month long. However, the kids sometimes weren’t even aware that they were in therapy. They use play therapy, art therapy, recreational therapy, group therapy, and individual therapy every day (7 days a week). Older children stay the night, but because Brielle was so young it was felt by all involved that it would be detrimental to her treatment to be away from home at night.
We are so thankful for the team that treated her. Especially Dr. Sacco, Kim the play therapist, and Natalie the individual therapist. Brielle had a staff member assigned to her each day that would spend the entire day monitoring her progress and taking her from one activity to the next. Thank you to all the ladies who did such an amazing job with Brielle each day! They have an extensive team of physicians, psychiatrists, psychologists, nurses, dietitians, therapists, and office staff on this unit. It is amazing how many people they have working there and how great they all work together. It is a first class program in terms of ability to treat eating disorders and work with the families. It is intensive and difficult for both child and parent, but so worth it all. Parents have to take weekly classes, participate in group support meetings, dietician classes, and therapy classses. It was all very well presented and even I learned quite a bit. Eating disorders are no joke. They can be deadly. They take it very seriously at this facility and for that I am so thankful.
Brielle will continue with play therapy and we will return to the unit for group sessions and help from a dietician. The support that they provide after discharge is extremely helpful.
They make it such a safe and fun environment for the kids. Brielle actually looked forward to going each day, even though she told us it was difficult. She made friends with other kids and brought home new art projects daily. She was especially excited for her last day. Not because she was done, but because she said she would get a special “goodbye group”. She came home with a booklet that the kids signed, wrote encouraging messages, and colored in the booklet for her.
I had to bring the boys with me to her discharge, as my sitter had to cancel and Justin was working. They liked getting to finally see Brielle’s “eating school”. Charlie keeps saying he wants to go to eating school too. I am thankful my boys eat just fine on their own!
If you are looking for an ARFID treatment program for your child, I highly recommend Children’s in Plano. Here is their web page about eating disorder treatment: https://livingjoydaily.com/2017/07/13/brielle-was-discharged-after-a-month-in-the-hospital-for-treatment-of-her-arfid/
So thankful this worked foe Brielle. Praying it will continue.
Thank you Ellie, we are so thankful for God’s hand on Brielle and the major improvements we have seen so far. WE appreciate the prayers very much, as we continue on this path of helping her eat and thrive.
Thank you Evie!
Thank you for sharing your and Brielle’s experience with this condition. I had never heard of it previously. This is an important awareness for anyone who has or who works with children. Thank you!
Thank you Heidi.
Wow! I knew Brielle was having an issue, but never in my wildest imagination knew anything about this disorder, even that it existe. I’m so, so sorry that Brielle – and ultimately your whole family – had to endure this, but it’s so fortunate that there are programs available to help her and others who also suffer from this. Just brain-storming and removing the personal connection of Brielle, I wonder if you gave a lecture about ARFID to a class of parents or students which would Include symptoms, how it affects the body and subsequently the family unit, the technical aspects of the treatment, and the ultimate results, your explanation and candor about what the symptoms are, what it does to an individual and/ or the family unit, how it is treated,and what the outcomes are, which you explain so clearly and easy to understand. I’d bet there are many other children out there whose parents and doctors don’t connect the dots and come up with the correct diagnosis. And beyond that, even if they do, are there monetary programs available for those families who don’t have the resources to access the programs. It’s a very serious and complex condition
That i’m fairly certain crosses all socio-economic lines. How do they get served? How can they afford the care and the time and the potential loss of income, etc, etc. These folks concern for their childen must be the same. Perhaps there are programs that, can help them as no child should be denied treatment when it is a available to them.
Well, this commemt accidentally
turned into a reply, a rant, some suggestjons! Please let me know of I over-stepped my bounds in any way. Also please give Brielle a Hug for me! She’s got this
Wish we lived closer so i could help you, especially with those on-the-go boys!!!
The psychiatrist who treated Brielle actual speaks publicly on the subject to help make others in the community more aware. I am thankful she uses her valuable time in this way, as she is reaching many by speaking to other professionals who deal with children. Word is getting out about this disorder, thanks to professionals like our psychiatrist.
The program where Brielle was treated had children from families of all socioeconomic levels. It is one of the major hospital chains in the DFW area. I don’t know all the ins and outs, but I am pretty certain there were at least a few in the program there on public aid (I hate to write that because I don’t want it to seem as though I am judging others, as I am not), it was more of an observation and overhearing phone conversations as some of us would be in the waiting room for hours between parent sessions and therapy session to attend. For kids that participate in the program the parents qualify for the family medical leave act. They told us to bring our paperwork for completion when Brielle was admitted. Since we are local and my husband was still able to work and he arranged Brielle’s Session (when he was required to attend) into his schedule we did not take advantage of the family medical leave act. It is a good thing this act exists, as I am sure there are many that have to take time off to travel and stay near the facility. The Ronald McDonald House was also utilized by those parents who traveled from further away. It is still a hardship on families of course, especially when you have Daily financial struggles weighing on the mind.
I think one of the bigger issues about ARFID is the lack of help for the younger kids. We were lucky the program was close to us. Like I mentioned in the article, many came from quite a distance (other states) because there weren’t programs for them locally. Most Hospitals and eating disorder programs treat the more commonly known eating disorders (anorexia and bulimia) and not ARFID at all unless the child is older (usually 11 and up). There were a lot of kids there under age 11 because of lack of programming in their local hospitals, so they end up in Plano as a last resort, no other place to go for treatment. I do hope that as awareness increases more eating disorder facilities will take on these younger ARFID patients.
Thank you for bringing awareness and being transparent. So wonderful to read about incredible programs and your success!
Thank you Jamie, we are so thankful for this program and that it worked so well for Brielle! It is an answer to many, many prayers we have had in the past few years.