HELP 6yo SEN boy

[devonianBiatch]

I have no idea if I'm posting in the right place but I'm looking for some advice for a family member. I'll be as brief as I can other wise I would waffle on for ages.

He's 6. Under paediatrics for a quote serious delay. It's only in the last 6-12 months his speaking/words are legible and even now strangers really struggle to understand. He's seen an Ed psych at school and they says remove ALL "serious" learning and get back to play as he now thinks of school as "bad". He's an absolute beauty of a kid, heart of god and pure sunlight.

He's always been VERY restricted on food. Mashed potato, chicken noodles, plastic cheese on blue warbs, sausages out of a tin of beans, sausage from inside a fresh baked sausage roll and Aldi smart price pizza. Very occasional bowl of cereal. Smoothies and milk shake. He never eats all of these at the same time but will vary between 2-4 a week .

Last week we went on holiday. The place we went to is a chain and so we stupidly assumed it would be the same/similar in terms of the on site shop we went to previously. We were wrong. We knew we couldn't get his bread or cheese but half way through the holiday the shop ran out of the noodles. Then he refused pretty much everything else. We spent 3 days offering chocolate milk with squirt cream, biscuits, cake with sliced bananas etc. He was probably consuming 4-600 calories a day i can't say how traumatic this was for us, but he didn't seem the slightest bit upset.

Anyway, now we are home and his food intake has HUGELY dropped. Three days on the run he has refused breakfast, had just a biscuit and half a sandwich for lunch and then eaten a tiny part of his evening meal. What's writing me the most of that when he tries to eat the noodles he previously LOVED, he's retching everything he puts them in his mouth. So he's too scared to try them. We've agreed to withdraw them totally and not even offer them for a few weeks in the hope that the upset of the holiday has faded etc. In the mean time we are offering paediasure . If he is no better in 2-3 weeks then it will be back to the paediatrics and SALT.

In the mean time, does anybody have any experience with anything like this? Any suggestions? It really feels like we've gone back wards 2-3 years ☹️

Oh your poor boy, and poor you 😢

Look up ARFID. There is lots of info on the internet and parent support groups on FB too.

As previous posters says, it sounds like ARFID, an eating disorder. My younger DS has just been diagnosed and is being treated at the Maudsley. Google The Arfid Clinic at MCCAED. Also look up Gillian Harris and ARFID: she's written a good book on the subject and runs private clinics.

ARFID is often linked to sensory issues and autism, although it can also be triggered by traumatic experiences, such as choking. Whatever the cause, the sufferer needs specialist help because of the risks. My DS is chronically underweight (below 1st centile) and needs food supplements like Fortisip and medication for the associated anxiety. He's now having specialist CBT as well.

Was about to say ARFID too. Is he being assessed for autism?

Also, it sounds as if you're already doing this, but if he's underweight don't worry about healthy eating - just prioritise calorie intake. My DS (16) eats loads of chocolate just to get the calories in. He refuses most fruit & veg, but he takes daily vitamin tablets. A recent blood test showed that he was only deficient in vitamin D and copper, which is amazing as his diet is terrible - so that must be down to the vitamin tablets.

This suggests a few things to try to remove the anxiety around food through play etc. it sounds like you're all doing the best you can and recognising that eating anything at all is better than nothing.

www.arfidawarenessuk.org/treatment

He was being assessed on the ASD pathway if I remember correctly but they seem very reluctant to label anything and have said it's more of a developmental delay and to wait and see. Then in the future he can be reassessed on the ASD path if needed. Arfid has been casually mentioned but nobody seems to really be that bothered? He has terrible sensory issues around his mouth and really struggled horrifically with tooth brushing as a toddler and so in turn he has a lot of decay on his baby teeth. Chronic infection and teeth waiting to be removed but a month ago a bad tooth fell out and suddenly he gained weight, had the start of chubby cheeks and everything! Looked so positive and then this holiday experience has torn it to bits.

So three years into this and we still really don't have any answers about a firm diagnosis other than a developmental delay. His elder brother is also under paeds but his issues with food are the direct opposite and he never ever seems to feel full. If we didn't limit his intake I think he would happily eat for the 14 hours a day he isn't sleeping. Autism is rife in the boys in our family.

I'm sorry you're struggling to get support. Sounds very familiar. Keep pushing for help and don't be fobbed off. The squeaky wheel gets the oil.

ARFID is just as serious as any other eating disorder, but it's a relatively new diagnosis so there's still a lot of ignorance about it. My DS only got help when his weight was terrifyingly low. The earlier the right support gets put in place, the better.

I would proceed on the basis that this is autism and ARFID and then look online for strategies and support groups with other families who are going through it.

Yes he might eventually end up with a slightly different label but at least this way you are coming at it through the prism of sensory needs rather than naughtiness, which is a completely different approach.

Sounds like the bad teeth might be causing pain with chewing which would explain the need for soft foods like noodles. I am autistic and obviously can't know what's going on in his head but reducing anxiety and gaining his trust and confidence back sounds like it's key. Treat it like overcoming a trauma and baby steps to regain confidence in his safe foods. I'm in an adult autism group for people with eating issues and safe/same foods is a big component for some. Sometimes even changing the packaging can be enough to freak someone out and lose trust in the product.

I expect that there are groups on Facebook aimed at families with children who are struggling.

It sounds like he’s in pain from his teeth. Is he being seen by the community dentist? Is he booked in to have the teeth that need it removed/filled?

Yes we've had issues with the packaging changing and that's really affected him at times. He is under the community dentist and has had two back baby teeth capped in silver to protect them and was waiting for 3 teeth to be removed but one infected tooth seems to have fallen out in three sections and has an adult tooth coming through. That's when he really started to gain a C little weight, checks popped out of nowhere! He is much better brushing his teeth since we got a tooth brush game. It basically connects to his tooth brush and he watches the screen in the phone and brushes away the aliens on the screen. So that's good.

I should add that I'm not his mum, I'm his aunt but I do an awful lot of helping out with the boys as my kids are all older And I just love them too bits. So if I'm a bit vague it's because my own 4 kids turned my brain into porridge 😂

So yesterday I done some reading. We made him super soft and creamy mashed potato. Mashed and blended 4 times, bit of butter and white pepper, just how he likes it. We have stopped all requirements/rewards etc so no more " when you finish your dinner " and we just gave him his like warm mash and walked into the garden to enjoy our bbq. He ate 3-4 tbsp and then had 3 chocolate crispy cakes. Then a paediatric shake . Around 7 he announced he was hungry again so had 7 plastic cheese slices. He ate only 1 pack of Pom bears through the day in school. But we are doing our best to step back and relieve any pressure he is under. We've got a giant bowl of mash in the fridge to reheat whenever he says the magic words " I'm hungry " and we will be doing our best to keep a secret food/calorie diary so we can actually see what he's consuming. I thinks it's very easy to get over worried about calories. And it's very easy to consume more than you realise!

Thank you all. I'll let you know how we get on.

I really sympathise, it's so hard. My dd was like this, we resorted to adding olive oil to food to increase calories (luckily she loved bread and dipping it in oil too) around 8 it started to get easier but for about 6 years she was mostly surviving on bread and specialist milkshakes. The good news is it got better gradually and as an adult she eats ok, hardly the best as she picks out onions and dislikes green veg but she eats relatively healthy is boring (she lives on dal and rice basically with the only green stuff she'll eat, spinach and peas)

The SEN board maybe a helpful place to post. I would ask your GP to refer you to a paediatrician dietitian.

Maudsley have a specific ARFID service if you can get a referral to them. Or GOSH’s feeding and eating disorder service is also excellent with ARFID.

As well as Gillian Harris, Rachel Bryant-Waugh is one of the leading experts on ARFID.

Terms like developmental delay really shouldn't be used with a 6 year old. It's not good enough. I would expect a proper assessment process and subsequent diagnosis to be the next step. It sounds like you may to push quite firmly for that.

ARFID sounds like a good descriptor of what is going on with the eating.