Eating difficulities

[Rollingupahill]

Hi

I would be grateful for advice/recommendations on professionals that would be able to assess the nature of my DS eating difficulties and provide advice for school, for potential inclusion in EHCP? DS is not really eating at his mainstream school.

Thank you

Ds has a diagnosis of ARFID and it's written into his EHCP that he should be supported to eat at college. He has an extensive report with recommendations written by the NHS clinical psychologist that diagnosed his eating disorder and worked with him. Although his EHCP was written before that report. I'm pretty sure that both educational psychologists he's seen have also recommend support with eating in school, as has CAMHS and a sensory OT.

Getting help for his ARFID has been incredibly difficult. We pushed for 2+ years to get specialist out of area support. As our local area is not commissioned to offer anything. At times Ds has been physically very unwell due to his eating difficulties and it was still difficult to get help.

College have been rubbish and his eating has not been supported at all....but that's a whole different thread.

I think it's dependent on what your Ds's difficulties are, as to who could help.

Thank you for responding. DS attends mainstream primary school.

I think there is a range of factors stopping my son eating well. He is rigid about his diet (but this is largely addressed by us making him packed lunch), chews very slowly, is affected by the noise and general activity in his mainstream school and has become highly anxious about eating. He says he is scared when asked to eat and needs to be distracted, or else it is very hard. However, he wants to be left alone to eat slowly. It is common for a single meal to take him hours to eat at home, but at school he does not have that time and, in any event, may now refuse to eat even if he did. The school has tried to encourage him (which to him is pressure) and also give him a separate place to sit with his teacher to no avail. We feel like the issue is escalating as he becomes more and more anxious. He says that he never feels hungry.

I am just not sure where best to turn. Thank you.

Ds's ARFID symptoms were mostly sensory based, rigid diet, textures etc. But there was also some interoception difficulties too. As in Ds often does not feel hungry or can't read hunger signals in his body to understand when he needs to eat. He would often feel sick and that would stop him eating completely. He lost a considerable amount of weight and even now his food intake and energy levels are still quite low.

I think as a starting point you could ask for referrals to a dietitian and a sensory OT ( they can help with interoception difficulties). If he sees a paediatrician it would be worth asking them for advice about referrals onwards or if not you could ask your GP.
Many local eating disorders teams won't deal with ARFID or similar eating difficulties, hence us having to push for Ds to see specialists in London.

Thank you for your help. DS also says that he feels sick when we are trying to encourage him to eat. Will push forward. Hope all goes as well as possible with your DS

Good luck! You might need to be pushy!

I have found so many health professionals have not heard of ARFID or similar difficulties and it was very much a 'not my problem to deal with attitude'.
I remember CAMHS saying to me that Ds's weight was so low that if he was anorexic he would be in a wheelchair. But as he wasn't, it was fine!!
When we had contact with the specialist team in London it was a revelation to find professionals that completely understand with no judgement and wanted to support him and us.

Sensory OT's can be really helpful and Ds did a lot of work on interoception with his, although he is an older teen and much of it is more suited to younger children. So that is definitely something that could help your Ds. They can also help with dealing with classroom noise etc.