Eating Disorder Treatment For Lydia Ruth

We are raising funds to pay for the treatment of our 6-year-old daughter Lydia Ruth. Last year Lydia was diagnosed with ARFID, Avoidant Restrictive Food Intake Disorder. ARFID is a form of eating disorder characterized by an intense and unwavering fear of food. Depending on its severity it can have the same effects on the body as Anorexia. Unlike Anorexia, however, there don't seem to be concerns over weight gain or body image in general. Rather, in Lydia's case, her rejection of food (and drink) is partly connected to sensory processing difficulties in her mouth that make these life essentials feel terrifying for her.

There is relatively little knowledge of this disorder in the general public and very few treatment clinics in the UK. From where we live the closest clinic (The Feeding Trust) is 230 miles away. Unfortunately, because this is a private clinic, our health system does not pay for it. And because our application for funding was rejected we are in the position of having to raise funds ourselves.

ARFID is a devastating condition and has already had significant impacts on our daughter's mental and physical health. Please help us give her a better chance at a healthy and vibrant life by helping us to reach our £6,000 goal, which includes an assessment, 12-18 month treatment clinic, and some assistance with travel and lodging costs.

Lydia's Experiences with ARFID

Although she was only officially diagnosed with ARFID last year, we knew Lydia had serious problems with eating when she was three years old. As a baby she was an adventurous eater. We practiced baby led weaning and she enjoyed most of the foods we put in front of her. She loved olives and smoked salmon and would eat raw mushrooms and cauliflower as a treat. For breakfast she loved whole grain oat biscuits. However, when she was three, and around the same time she started nursery, Lydia began rejecting one food after another until there was hardly anything she ate. At first we thought she was just going through a phase of "fussy eating" or maybe had a virus and just wasn't hungry.

Eventually these ideas completely vanished from our minds. It was clear Lydia's food refusal was deeply connected to anxiety. For example, at one point we went through a phase of Lydia being terrified of choking. During meals she coughed so much she often made herself vomit. One time we were in a supermarket about to buy fruit. Suddenly she had a panic attack in the shop because she thought if her mother ate the fruit she would choke and die. This anxiety about choking and eating became so bad that she lost a significant amount of weight and began picking her skin until it bled. She began to hide food she wouldn't eat. She became hyper vigilant and suspicious: inspecting food for "bits" or "black spots", worrying people might be sneaking meat into her food or that the food she was eating actually was meat in disguise (she is a vegetarian). She began giving many reasons why she couldn't eat foods: she couldn't eat bread because that was for ducks; she couldn't eat Cadburys chocolate because it had a milk sign on it and milk might make her sick; she couldn't eat pretzels because her brothers got matching shoes; etc. As all this was starting she also began complaining regularly of nightmares and often told us she was afraid her mother would die.

Obviously all of this going on with our little girl worried us so much. When we first realized she was losing weight we started taking her to the hospital specifically about her eating. We did our own research and learned about ARFID. But whenever we raised concerns about it most of the pediatricians we spoke to looked confused - that's how unknown ARFID was. Then Lydia was found to be anemic and started complaining that things looked blurry. When we took her to an ophthalmologist he told us that eyes are the last place in the body that receives nutrients, so they are the first organs to develop problems when you aren't receiving adequate nutrition.

This news devastated us. Here we had been struggling for more than a year to feed Lydia without any relevant support from health services and now we learned that her eyesight was suffering. That in essence is a picture of the helplessness and frustration we've struggled with. We've sat in hospitals for hours with doctors trying to bribe her to drink little cartons of juice because she was dehydrated. We've helped hold her down kicking and screaming so that doctors could take her bloods to make sure she didn't have nutrient deficiencies or kidney damage. But really nothing substantial has been done to help her.

Lydia's diet has been atrocious despite all efforts to offer a variety of healthy foods. At one point the only food Lydia would eat was plain noodles. For more than a month she ate these breakfast, lunch and dinner. When we took Lydia out of school because of anxiety all she was really eating was chocolate buttons. This obviously boosted her calorie intake and increased her weight but also resulted in her body receiving very few nutrients. Last month a typical eating day for her was 3 plain bread buns with Skips (A UK snack similar to potato chips / crisps). And thanks to a packaging change on a bag of Skips, Lydia has now lost this food.

ARFID sufferers are often brand specific. A change in packaging suggests a change (or contamination) of the food itself. What most people don't understand is that our daughter would rather starve herself than consume something "unsafe". At present she is in extreme turmoil: she desperately wants to eat but can't find a new safe food to replace her crisp sandwiches and is absolutely terrified of eating anything that isn't safe.

Two years ago her dietitian prescribed Lydia build up drinks like Paediasure, protein powders, Pro Cal (a high energy powder), and Movicol (a laxative) as she became chronically constipated. Lydia has refused all of these interventions.

2024

This year has been a difficult one for our family and some of the stress has impacted Lydia's eating and drinking. In the last six weeks she has become dehydrated twice and found to be anemic again. She has also developed acid reflux due to not eating enough food, the discomfort of which has made it even harder for her to eat and drink. She has almost become paralyzed over it so we have had to start following a 20 minute schedule where we use a large capacity syringe to help her drink. Furthermore, because of heightened anxiety Lydia has developed severe psychosomatic pains all around her body. She cries with the pain and won't let anyone touch her. She becomes dizzy and holds onto furniture so she doesn't fall over. She often asks to be carried upstairs as she feels her legs are exhausted. Unusual for her she has been spending long periods of time each day lying down trying to nap - we think because of her anemic and dehydrated condition. She has also returned to sleeping in her parents' bed due to her anxiety being so high.

We worry so much about what the future will be for Lydia Ruth and whether she might at some point require a feeding tube. We worry about her teenage years when this illness can worsen significantly and even morph into Anorexia which can be fatal. We need help for Lydia now, before this debilitating eating disorder completely takes over her life.

That is why we are asking for your help. Our daughter's health is so poor and her condition is effecting our own mental health and that of Jonah (her older brother), who worries for her. We would be so thankful if you could contribute to this fund that we have set up for Lydia.

For all your help we thank you in advance with all our hearts,

Love,

the Marek Family