There will be a lot more ‘try at home’ strategies in next week’s picky eating edition, as the crucial thing with ARFID is having the support of an experienced team of professionals and so really my key piece of advice is to ask your paediatrician to refer you to the relevant professionals. In this newsletter I’ll try to give you an idea of the kind of support your child might receive.
Currently there is not enough research evidence to definitively suggest the best treatment for ARFID, however, there are some recognised approaches. The key thing is that the approach needs to be individual to the child and their needs. For example, some older children may benefit from Cognitive Behavioural Therapy (CBT) alongside dietitian support but then for another child with a different set of circumstances, they might require more of an occupational therapy focus to their treatment alongside dietician input. All treatment should be multi-disciplinary and the team should be experienced in treating ARFID. Personally, I would want to make sure any professionals were neurodivergent affirming.
Desensitisation This tends to be successful for younger children and it can be used successfully with autistic children. This needs to be done very slowly and carefully under the guidance of a professional. It is about enabling the child to become more comfortable with seeing foods at a distance and then eventually, being able to tolerate the smell and feel of foods, leading to the end point of eating a new food.
Occupational Therapy (OT) and Sensory Integration Therapy (ASI) All of our senses and our brain are linked and when they are not working well together then we do not have the strong sensory foundation needed to develop skills such as eating. Sensory integration difficulties can involve difficulties with sensitivity to touch, smell and taste, difficulties with postural control required to be able to sit to eat, difficulties with interoceptive awareness which may mean the child does not sense feeling hungry and difficulty with tactile perception which means the hands and the mouth is not making sense of what is in there and this can lead to difficulties tolerating texture. ASI therapy is usually carried out by an occupational therapist (some physiotherapists and speech therapists are also trained) and they need to have the required level of specialist postgraduate training. ASI therapy is child led and playful. ASI usually takes place in a specialist sensory clinic. You can have a virtual tour of mine if you are interested in what a sensory clinic looks like: click here
Psychological Therapies If for an older child, it becomes apparent that there are unhelpful thoughts at the core of their eating disorder then Cognitive Behavioural Therapy (CBT) can help change those negative thoughts and actions. CBT can also support mental health conditions such as anxiety and OCD which can present alongside ARFID. Some success has been had using Dialectical Behaviour Therapy (DBT) which involves identifying and accepting negative emotions and working through them. Hypnotherapy has been found by some to be helpful alongside a desensitisation programme. Eye Movement and Desensitisation and Reprocessing Therapy (EMDR) therapy is well researched as a treatment for trauma and PTSD. There is some evidence that it can be helpful as part of ARFID treatment. Again, I would like to stress that the therapies chosen need to be the right ones for the child’s unique circumstances.
Dietician Support Nutritional support and advice from a registered dietician is key. Supplements may be suggested but of course getting a child to take them can be very tricky.
Parent Support Please don’t forget your own needs. Supporting a child with ARFID can be anxiety provoking and stressful. Being part of a community where you can learn more about ARFID and hear the things that are working for some parents can be invaluable. There are lots of groups on Facebook and there may be a local support group in your area so please do join something.
Final Tips!
- Start small – despite feeling desperate for your child to eat more, it is so important not to push too hard or too fast. Being in the room with a new food is big progress and in time, alongside the right therapy and support, this can lead to be the food being on the table and then the plate and then being touched and so on, until one day the child may have a bite.
- Be consistent – you may think that desensitisation strategies such as having the food simply on the table, are not working but repeated exposure to the same food is needed for the child to be able to tolerate it.
- Be child-led – involve your child, if you can, in the planning of a new food to work towards. Encouraging their engagement and curiosity can be really helpful and can reduce the anxiety somewhat.
- Trust your gut! A parent of a child with ARFID reminded me about this one and it's so important. Not all friends and relatives are understanding and supportive and even though deep down they care, they can be very judgemental. Remember, you know your child best. Trust your intuition.
Next week’s newsletter on picky eating will have some practical strategies to try but I really wanted to make the point this week that ARFID is an eating disorder and if your child has this, then proper help from a multi-disciplinary team is required. One of my children is a picky eater and I know how hard that is, but I can’t even begin to imagine what you parents of children with ARFID are going through and what your children are going through; I truly hope you get the help that your child needs.
Hanna
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