Who can help us?

[Punxsutawney]

www.mumsnet.com/Talk/eating_disorders/4049798-ARFID

This was my thread back in October.

Ds is struggling at he moment and is continuing to restrict his intake of food.

Camhs were initially concerned and flagged him as amber risk because of his low weight but now they say they can't help. He starts sensory integration therapy with an NHS OT in April.

Last weekend was particularly bad and on Saturday all he ate was a bowl of pasta and had a hot chocolate to drink. Sunday he ate three scotch pancakes for breakfast and had a hot chocolate for lunch and refused dinner. Dh finally persuaded him to eat a small bowl of pasta late in the evening but he only ate it because we asked him quite a few times. He would have not sought out any food himself. At times he doesn't seem hungry. He can now only manage small portions before feeling sick. This can also impact his mood. Lots of staring into space, not really able to engage with anything.

He was too tired for school again on Monday (second day he's missed over the last couple of weeks due to exhaustion) and didn't eat until 6pm that day. Things have improved a little over the rest of the week and he's back to eating the bare minimum but he's functioning and has been to school.

He had a hospital appointment for an unrelated matter a couple of weeks ago and they worked out his BMI as 16.8. He actually weighed more than he does on our scales at home, although I'm guessing the hospital ones are more accurate.

He sees CAMHS sporadically for support with anxiety and depression ( he is autistic) and is on the waiting list for CBT but they are not really helping at the moment and the promised fortnightly appointments are not happening at all. His CAMHS nurse has consulted the eating disorders team but they don't deal with young people like Ds, as he has no issues with self image. They said if he did they would have concerns about him. I've told Camhs, that some days Ds barely eats but it's just not within their remit, so my concerns aren't really acknowledged. Ds should be seeing his CAMHS nurse today but they have not bothered to make contact again. I emailed the eating disorders referral team this morning myself, just asking for advice, not a referral and I've been told I should get a phonecall next week.

We are hopeful that the sensory integration therapy may help and Ds has already been assessed by the OT, so she is aware of my concerns. Is there anyone else that we can try approaching for help?

I'm wondering if he needs a dietitian appointment but he had a one 18 months ago and she said she didn't have a vast amount of advice as she was used to dealing with much younger children.

I get the impression that Ds is considered a 'fussy' eater. But I'm worried we are now getting past what would be considered normal fussiness.

Beat? Worth trying their helpline to see if they have any advice or can sign post.

Badgering the GP?

Self referral into local ED service and keep going back to them until they do something?

No experience like yours only own ED.

on Beat you can find specialists in your area, like specialist ED dieticians etc HERE Perhaps that will help a little? I'd def keep on the GP and CAMHS team as if you feel there is a problem then you need to be comfortable that it is being managed and your DS is medically safe.

FWIW when I was younger I used to get terribly anxious, and I didn't want to eat. I just didn't get hungry whatsoever. I don't know everything about your situation of course, but I'm just saying that it might not be an eating disorder as such, rather a symptom of anxiety as you say he suffers with it sometimes. Things are so up in the air at the moment that I think people with anxiety are finding things tough!

Oh OP - that sounds such a worry - do join us on the teen eating disorders thread if that would help. We're all very much learning from and supporting each other - we're not professionals but have lived experience of the struggles with an ED, including the pressures of being a parent to a child with eating disorders...

Meant to add - we have had posters on the teen thread with experience of ARFID and posters whose DC have and ED and autism and/or additional needs so hopefully there will be some voices of experience similar to yours.

Can you afford to go private?

Dr Gillian Harris and Dr Rachel Bryant-Waugh are experts in ARFID. The former definitely does private consultations and I think the latter also does.

Thanks for all the replies. Some things to think about. We would consider private if we needed to.

Ds ate very little over the weekend. He didn't eat either day until at least 6pm. He also didn't eat breakfast this morning, as he says he no longer likes it but did agree to a glass of milk. Dh has got him to eat some pizza tonight, so that's something. But he felt ill in school today and commented that it was probably because he didn't eat at break time.

There is a definitely sensory issues but watching him last weekend when he was incredibly low, made me think that there is an element of control too. He's now told me he can't remember feeling low or being too unwell for school. I'm not sure if that's the case, or if he just doesn't want to talk about it.

Back in 2019 he did have bloods and an ECG as the physio he was working with at the time flagged concerns about his weight and eating and contacted our GP. He also had a one off dietitian appointment but no other help was offered and his tests came back okay but he's lost weight since then. He lost about 8kg in the first lockdown.

I've spoken to the Camhs worker today and they are going to (hopefully) consult some colleagues for advice. The eating disorders team hasn't got back to me yet. But we don't know if that would be an appropriate route anyway. His autism diagnosis is fairly recent and he masks a lot in school. He likes to tell everyone he is 'fine', even when he's not.

He does have an EHCP and it's written in his plan that school will check that he's eating. That's not happened yet, but I know that's pretty difficult.

@myrtleWilson thanks for your comments. I had a quick read of your thread and 💐 for you and the other posters facing such difficult times with your Dc.

I'm going to keep pushing to see if anyone will help. I'm hoping at some point, someone will listen and will be able to offer the right support.

I am in the same boat with DS1. He is 18 and also has autism. Maintaining same weight since age 14 1/2. Not losing but cannot gain and BMI 16.5. ARFID was suggested to me the other day and I will be getting more info as, like you, the last couple of years have been so frustrating. Hang in there

Thanks @vikingwoman, it's really hard. So sorry you are in a similar boat. 💐 I'm finding most professionals don't really know much about ARFID.

We are no further on really this week, despite me pushing. Camhs decided that Ds needed to see our GP urgently. GP refused to see him until next week, although I have managed to change it to Friday this week now, after pleading with them. I also spoke to the eating disorders team who told me the GP needed to see him before the bank holiday weekend ( no chance of that) and to take him to A and E if he went downhill. I can make a referral to the ED team if needs be but they have already suggested they are not an appropriate service for him....I'm not sure who is.

All Ds ate yesterday was a bowl of cereal and nothing at all today yet, although he's had a hot drink. I have no idea how he's functioning, when he's eating so little.

The GP won't see him so it's the practice nurse on Friday. Just BP, weight, height and pulse I think. I've been told he'll only get an ECG if his pulse is below 60. He's also having some bloods. There's no plan after that though. GP not sure why Camhs have referred him to them and Camhs saying it's not within their remit and maybe be needs a dietitian. We are so frustrated.

Punx I'm sorry if this sounds blunt, I don't know how to word it so it doesn't come across like this, but having seen other posts of yours, DS isn't functioning.

Have you complained about CAMHS and the GP? Often when things get escalated in writing people start to notice, especially when asked out right if DS is safe to be left as he is - the answer is he's not and no one can or should give that reassurance. If there isn't a service that can help in your area the CCG need to refer to a service elsewhere that can. If DS is hitting any of the Marsipan warning signs you should take DS to A&E.

I am in Canada so unfortunately can’t help/comment on navigating UK pathways, I sympathize with what feels like dead ends and runarounds. For the better part of two years I’ve been monitoring his daily intake. It’s not bad, to be honest, on most days. He does trampolining daily (he’s been jumping since his crib days!) for sensory/calming. I try not to think about the calories he burns on it. As with many on the spectrum, I’ve long noticed taste or texture issues with food, but he still managed a decent intake. His GP has now recommended I contact an Autism organization in my city, as she can no longer help (outside of dietician support, food plan suggestions..... which he doesn’t really engage in). I contacted the suggested organization this morning, and will hopefully get a callback shortly.
Thank you for sharing your story Punxsutawney. Sending hugs and

Priya Tew, Dietitian UK. You might have seen her on how to eat well for less. She is a dietitian and is specialist in supporting those with eating disorders. Yes you'd have to pay but it could be worth a try. Even if just for a chat. She has a facebook and website. She is a quite local to me. She has a very sensible approach to food and nutrition.

@EDNC you are right about him not functioning properly.

I've not complained yet. The admin team at our surgery would not budge last week. At one point they even put the phone down on me, I wasn't being rude at all, just asking for them, to at least consider an earlier appointment. Once Camhs had sent their email, they didn't get involved again, even when I told them we couldn't get an appointment. I think they thought they had done their bit.

Camhs are doing a general home visit tomorrow, it's been four weeks since they last saw him. I'm planning on telling them how bad things are and Ds says he will be honest too.

I really tried to push and advocate for him last week but I feel like nobody is listening. I've also been looking at private options. I am so worried about him and will definitely take him to A and E if he becomes unwell.

School is becoming increasingly difficult and I'm not sure if that's health related or because of his other difficulties.

I think we probably do need to complain, because this doesn't feel good enough. I'm amazed that nobody is taking us seriously.

Viking hope the charity can offer some advice, sorry that your GP isn't more helpful. It's hard, because I get the impression that many see Ds as a fussy eater and it's almost like that's our fault. You mention the sensory aspect, Ds has just started sensory integration therapy and the plan is to work on some eating difficulties. But this is all feeling a bit more complex now, as he is becoming unwell at times.

Thanks for the suggestion Mumof1.