Did you know that GP’s in the UK get less than 2 hours training on eating disorders in their medical degree (sourced here)? It’s simply inconceivable. The topic of eating disorders was something I never had to give much thought about until I had my son, yet now it consumes most of my thoughts. Eating disorders awareness week is a chance to share our stories and connect with like minded people. You never want to have something in common such as this with another parent, yet here I am. I hope if you are in the same position you know that you are not alone, and work is being done to try and make a change.
Eating disorders can vary dramatically between the sufferer whether it be child or adult. ARFRID (avoidant restrictive food intake disorder) is a relatively new diagnosis previously known as Selective Eating Disorder. Sharing similar characteristics to anorexia where the amount and type of food consumed is limited, it does not include psychological distress in terms of ones body size and/or image. It can be brought on by medical and surgical interventions where eating has had an impact and triggered aversions to food as a result. It can be diagnosed from changes in behaviour both physical and psychological. What is clear to see from the number of closed Facebook groups which I highly recommend you search for if you are a parent of a child with similar symptoms is that they feel they are not taken seriously. They feel their child is seen as just a picky eater or fussy, and should be more disciplined to eat the foods needed. But what do you do if that doesn’t work, they don’t eat like their peers, and they are not thriving as a result?
Joining the closed Facebook groups has been my saving grace. I can see parents in exactly the same boat as me, some worse, some better, and I can see where we are making progress and picking up tips of how we can move forward. Unfortunately this is more than can be said for any medical professional involved, as it does not come under the care of the general dietician and the ARFRID service in our local health board told me I would go on a course which hasn’t happened. Doing your own research can be a curse and a help, yet for me it has helped. I have taken what I needed and learnt to go to the professionals with a body of evidence when I am asking for more help. ARFRID involves having sensory aversions to foods. This can include not wanting different textures to touch, be on the same plate even. Eating plain beige foods only, hard crunchy or soft wet foods but nothing in-between. Not wanting condiments. Not wanting to try new things. A group of safe foods is often established which parents can rely on while they are tirelessly seeking support. I have followed play specialists such as the brilliant Play Hooray for games which involve sensory elements. Games are shared and used for food play by introducing food as a physical tool. This aids supporting children to get used to the feel of food before they feel the pressure to taste or smell it.
My little one has been on quite the journey. Where eating nothing orally by mouth following 12 weeks in hospital hooked up to TPN (total parental nutrition - where a broken down formula of macros and micros are administered into the blood stream) was needed, to now having a large group of safe foods with a reward chart tracking his fantastic efforts at trying new things. The first school party I took him too he was attached to a pump for artificial feeds into the stomach via gastrostomy (a feeding tube in the stomach). He cried at the sight of the party food and got distressed seeing his classmates all eating together. We left the party with us both crying in the car. I felt like the worst mother in the world having never seen him react like that at a children’s party being a new experience for him. Now at the age of six he is going to friends parties with his own lunch box eating happily with his friends having the best time. I am so proud of my little man, he has no idea how brave and hard he has been fighting since entering this world 6 years ago compared to his peers.