15 year old son gone from 81st to 7th centile quickly

[VivienneDelacroix]

Hi everyone, I wanted to ask if anyone has had experience of similar and what support you got.
My son is 15 and has hugely reduced his eating and drinking in the last 5 months or so, to the point where he has lost a total of 1.5 stone, 1 stone of which is in the last month. His starting weight was healthy, he has never been overweight.

Last July he was on the 81st centile for weight and now is on the 7th (he's grown taller too, at the same time as losing weight).

Complicating factors are he is autistic, selectively mute, and has a chronic bone condition (which he has infusion treatments for every 6 months).

Since January he has been coming home with a full water bottle and full lunch box, and then only eating small meals at home before saying he is full. Due to his communication difficulties he can't articulate what the problem is,but if we talk to him about food he won't speak at all.

I think it probably is ARFID, but with his medical history I want to rule out other factors.

However I did an e-consult today and was given a GP appointment for the 21st July. If he goes another month as he is and loses another stone he could be 7 stone by then, at 5ft10.

What would you expect the GP's response to be and did anyone manage to get seen more quickly?

Are there any private services we could refer to?

We don't have an ARFID offer locally and no post- diagnosis support for autism either (I do think it is autism-related).

He's been so ill with his bone condition for the last two years, and this year was looking much better but now this.

And advice much appreciated.

He needs to be seen faster than that. I'd go back to them and say the weightloss in the last month - from last July it's nowhere near as problematic but the speed of the last month is an issue. Any other symptoms you've seen? More tired? Less willing to join in more active family stuff like walks?

What is his school saying about things, any issues there?

Yes, I've gone back and said this. Although I also said it in the original consultation too.
He is generally tired anyway, due to the chronic pain associated with his bone condition and for the last few years this has hindered his ability to do normal teenage boy things.

In terms of school @RentalWoesNotFun we are currently in the middle of a long process of appealing the decision not to issue an EHCP, so the SENCO is very supportive. He has a lot of support from a TA who is the one person at school he will speak to, but he won't talk to her about food either and they are finding it hard to support him to eat, in the same way we are.

i don’t have any words of wisdom to help with getting more support but I didn’t want to read and run. I hope you’re doing ok. Our eldest is autistic and has trouble with food. He eats the same thing every day now and even cooks for himself so he can make it look as identical as possible each day. He’s so lean.

Our youngest also has a touch of selective mutism - escalated alarmingly when she was at nursery but deescalated back to mild when we got some advice from a speech therapist and changed her nursery. I suspect she’s autistic too, as she’s just like her brother behaviour wise in the house but she’s very different out the house.

In terms of getting help, I have found that viewing it as my job to manage any medical issues for me or the kids has helped me. I used to be so polite and almost apologetic for bothering anyone. Then my son got croup and for a moment, I really thought he wouldn’t survive if. It’s changed me. I realised I was just 5 minutes in a busy person’s day to them but these things were everything to me. So I decide what I want and they have to persuade me otherwise. Had a consultant say I didn’t need an endoscopy when I knew I had pretty much every symptom of stomach ulcers on the NHS page. They conceded they may as well do the scope as I was there - no apology when they found multiple sites of bleeding ulcers.

I use phrases such as:

• we need reassurance/ advise/ assessment.
• that’s too long to wait
• I’m still concerned that is too long to wait. What are the next steps given my concerns
• whats stopping you from…

Sorry for the essay! Please ignore if not helpful. I think your post twanged something inside.

Take care.

I have been in a similar situation and I couldn't get DD1 seen by anyone despite her being very low body weight. What I did, in the end, is I checked her heart rate, and it was up at 143bpm when she stood up. So I phoned the GP surgery, who had refused me an appointment, and said "DD1 is dizzy when she stands and her heart rate is 143bpm. I just wanted to check that that's ok." The GP called me back and I repeated what I'd said to the receptionist. She said "I can't tell you that's ok." and I replied, "Well what are we going to do about that, then?" She wrote me a letter for the hospital and sent us to A&E. DD1 was admitted to hospital for 9 days for weight restoration, complete bed rest and electrolyte balancing, then referred into CAMHS.

The rapid weight loss is more important than the overall weight loss. It messes with the electrolytes, and it's electrolytes that keep the heart and body functioning.

My advice would be to call the GP surgery first thing in the morning and ask for a same day emergency appointment. If they won't give you one, present to A&E and say that your DS is severely restricting his intake and has lost x amount of weight over the last month. They should refer to the MARSIPAN guidelines (Management of Really Sick Patients with Anorexia Nervosa). It doesn't actually matter why he's restricting or losing weight because at this stage it's a physical issue. The why can come when they know he's physically well.

A 1 stone weight loss in the last month puts him in the 'red' zone of >1kg weight loss per week for more than 2 weeks.

Thank you so much @Lougle and @ParkrunDistance your advice is really helpful. I really do appreciate it.