Faces of ARFID Series, Reggie
THIS IS REGGIE, HE'S FIVE YEARS OLD AND HE HAS ARFID. HE'S NOT A PICKY EATER. HERE, HIS MOM, LOUISE IS SHARING HIS STORY:
Louise is sharing what it’s like to have a five-year-old son with ARFID on the blog. She’s from England and a single stay-at-home mom to Reggie, 5, and her daughter, Frankee, 2. Louise is doing what she can to get info on ARFID and attends advisory board and other local meetings to find out information about what is being offered.
At what age did you realize Reggie had ARFID: 16 months, although I did not know of ARFID at the time I just knew something wasn’t right, it took a further two years for the health visitor to refer me and another year to be given the diagnosis of ARFID.
What are Reggie’s limitations with ARFID (food/friends/social activities etc.?)
My son shows lack of emotion and imagination and high intelligence, he finds it rather difficult to sit for a long period of time in a typical “eating” environment such as restaurants and friends’ birthday parties. He will only sit at the dinner table at home with his sister if she doesn’t have something that has a smell or is messy.
He has a packed lunch for school with his safe foods in but rarely eats due to peers commenting on his food. He has to have things done in a certain way in all aspects of his life such as if bath time, he needs to wash in the same order, hair, nails, body face. You cannot switch the order as it upsets him and he gets confused why it is different. He becomes obsessed with certain things and feels the need to learn everything he can about them; he uses food as a way of coping if he is worried about something he will reduce his food to only plain white bread until the event as passes.
List of safe foods:
White bread - Warburton’s farm house bread
Diarylea cheese spread
Dinosaur cheese (blocks of yellow cheese in the shape of a dinosaur)
Fries to go – microwave chips
Sausage rolls – only from Greggs
Small white chocolate buttons
Small kinder bars
Haribo sweets
Mini cheddars (small bags only)
Pringles – green or red
Pom bears
Shortbread biscuits
What steps have you taken to try to get help?
From when Reggie was 18/19 months old I had the health visitor giving me advice such as only offering one meal and not allowing him anything else. She said if he was hungry he’d eat it. When that didn’t work she suggested I offer the same non-safe food at every meal and if he sees it enough he will eventually eat it (put carrots on his plate at breakfast/lunch /dinner) and of course that didn’t work.
I didn’t get any real help until my daughter was around 6/7 months old and started weaning and Reggie was three and a half. My daughter Frankee had really bad reflux and would bring back up every meal and every bottle she had, although the doctors said it was normal. It had a real effect on Reggie as when she was physically sick he would also throw up.
It was only at that point the health visitor referred him to the team at the hospital. At around 3 years 9 months, Reggie was seen by the team at the hospital and it was suggested he had Neophobia (fear of food) and food therapy would help.
What kind of therapy/treatment has Reggie had?
Once the team at the hospital saw Reggie they decided he most likely had Neophobia and food therapy would help him. He attended one session a week for three months. He enjoyed going and they would spread butter on toast and rip and crunch up biscuits and bread, decorate ginger bread men etc.
I feel this helped Reggie not only be around different foods but also encouraged him to touch different textures and smell things he wouldn’t normally tolerate. The sessions were never about eating any food just a step to comfortably be around new and different foods.
I tried to continue the sessions at home but I didn’t have the same response from Reggie as the psychologist did in the therapy sessions, so I reduced what we did and we pick one non-safe food every week or so and explore it. We smell, squish, cut and sometimes kiss the non-safe food. I found this made that particular food less scary for him and he’d be able to cope in years to come when he is around it.
As a parent to a child with ARFID, what frustrates you most?
So many things frustrate me and it is all from other people, the lack of knowledge they have about ARFID. I have heard for almost three and a half years, “Oh he’ll grow out it” when I try to explain everything it is like they don’t take in anything I say and assume that I allow Reggie to control me and that he would just eat if I forced him.
Also because he is not underweight or unhealthy that I must be making out that it is a made up issue, a bigger deal then what is it and not really that important. I explain that he doesn’t have a big varied diet but what he does eat I make sure he has it. Reggie has little appetite and may eat a small sandwich for a meal but he normally has 4/5 “meals” a day.
What do you wish others knew about ARFID:
I wish people would understand the seriousness of ARFID, although Reggie has his safe food he doesn’t not have them all at once. He drops food all the time and it could be months before he has it again, he can go days without eating and is still a five-year-old boy and runs about and plays with little to no food somedays, there is only so long that he can do this till something gives. I give him vitamins every day in his juice bottle as he doesn’t get them anywhere else. That this is a life-long struggle for Reggie and I am doing everything I can now to help him prepare for his future.
What words of encouragement would you offer a person newly diagnosed with ARFID?
I would say don’t listen to other people’s opinions. You know yourself or your child best, you are no different to the next person and you have a whole support system behind you when you need it. We will raise awareness and this will not be the thing that defines you, it is part of you and will make you stronger.
Does Reggie have anxiety/depression because of ARFID.
I notice that when something is going to be out of Reggie’s routine he uses food as a way to cope. I try to tell him about different things that are coming up in advance so we can talk about it and he can gather all the knowledge he needs to help him not worry about it.
Unfortunately there are things that arise unexpectedly such as recently he was told he was going on a school outing to a museum for the morning. For the 10 days before he went he reduced his food to only plain white bread and ate maybe two or three slices a day. When he came home that day he returned to his usual eating habits.
Is Reggie generally happy? How are you dealing as a mom dealing with his eating disorder?
Reggie is happy and healthy and that’s what’s important. I do feel lost about where I can turn to, where I can get advice or just a bit of support on days that he isn’t doing so well. I was told by the hospital when they gave him the diagnosis of ARFID that there was nothing they could do for him anymore and he would have to wait till he is over 8 and be able to express his feelings.
Can you share a couple sentences about how Reggie feels to have ARFID?
I ask Reggie how he feels when presented with new and different foods he simply told me that he cannot have them and didn’t know why he couldn’t, he felt like he couldn’t.
What do you want society to know about the stigma of ARFID?
I would like them to know it is not a body image issue. When I say that Reggie has ARFID and it is an eating issue they assume that it is. I say to these people my son stopped eating at 16 months old, how is this an image issue? They don’t understand.
Is there anything else you would like to add—anything that’s unique to your situation?
I work hard with Reggie but don’t push him too far; he is a lovely boy and a brilliant big brother. His sister Frankee is two and a half now and adores him, she copies him. She copies him in every aspect. If Reggie is only having a small sandwich, she wants the same; Reggie doesn’t want to eat dinner that night so she does the same.
Reggie is at school now all day so I moved her main meal to lunch times and I will offer her food from 9 a.m. to 3 p.m. so I know she will not go hungry. She is a brilliant eater when Reggie isn’t here, she enjoys fruits and vegetables, fish, meats and your typical kids meals like chicken nuggets etc. I am stuck on how to break this cycle of her not eating an evening meal or eating little.