Beyond worried

[missrosex]

I'll try to keep as short as possible, I have been going on to HV, GP etc about my sons eating for about a year and I feel so unheard. My son is 2.8years old and I couldn't name you a handful of foods he eats. From 12 months old he rejected the spoon and all liquid form foods. Witch limited what we could give him but fine he was still eating finger foods etc. As the months went on his appetite became smaller and smaller, spitting foods out, gagging, putting his fingers in his mouth and now today there is not one food I can't tell you I'm certain he will eat. We have tired everything we offer him so many different things, he may have one good day and then weeks of eating next to nothing. Go back a year ago he was on the 70th percentile for his weight and today he is on the 10th percentile. My son is Gradually falling off the weight chart and I don't know what else to do. I'm sick of hearing kids will be kids or he will eat when he is hungry because we are now 3 days in the eating literally next to nothing. He has so much thirst and will drink and drink all day long but not eat. I have tried limiting the drink in hope he eats more but it doesn't work, he has no interest in food. I've had all the leaflets with advice and things to try nothing works. Please anyone help, I feel like if this continues for much longer my little boy will fade away as a mum all I want is a healthy child.

My DS has ARFID, so that's my first thought. He's 16 and now being treated at the Maudsley. I'm not saying your son would meet the criteria at his young age (and it's a common age for pickiness), but you're right to be concerned.

Two experts to google:

Gillian Harris. She is an expert on children's food refusal. www.foodrefusal.co.uk/who-we-are.html

Rachel Bryant-Waugh, who is the ARFID Clinical Lead at the Maudsley.

Both these women have written excellent books on food refusal in children.

But I appreciate that what you want is for your GP or HV to listen and do something. Honestly, I'm shocked that they're not, considering your child is sliding down the weight centiles. I don't know what you can do except keep waving the evidence at them. The trouble is that help doesn't seem to come until the child is seriously underweight 😐.

Also, I know from experience that it's literally about getting the calories in somehow, no matter what. So I have gone from a mother who promoted fruit and veg to one who bulk buys chocolate bars 🙈. It's all about boosting calories.

If there's really nothing your DS will accept (I expect you've tried smoothies), you could push for high-calorie drinks on prescription. My son is having two Fortijuice a day (he says only strawberry or forest fruit are ok) and is finally putting on weight.

I’m sorry you are nOt getting the support you need . I would absolutely recommend the resources mentioned above and also push push push with Hv and Gp- does he have any particular issues with any other sensory things such as clothes wearing, shoes, noises etc?just wondering about sensory preferences, also when u show/ present him with food what is his reaction? Disinterest , fear, disgust yuk ? having an understanding of the possible cause of the refusal is helpful to aid how to approach it.
will be eat any sweet things or ice cream? As pp mentioned for now priority should be getting calories in regardless of source and also a multivitamin. I can imagine how stressful this is for you ( and likely him to to some degree) so thinking of you and wishing you all the best!!

Thankyou for the links I will definitely have a look at those! It's beyond frustrating that they don't seem to care unless the child is so underweight that they are ill. I have been told for sooo long that if he's drinking then everything is fine, but they just don't seem to understand he is still loosing weight. It was only 3 months ago he was sat on the 25 centile, weighing him today was a massive shock and frightening to me to see him sat on the 10th after only a few months. All of his clothes are falling off him😒

He doesn't like things on his hands, he often comes over to me with his month open to wipe things off his tongue, he does have some sensory related problems, his reaction to food is next to none, he pays no interest in it unless it's put right near him, he pushes it alway and says no no no, if the food is in his mouth he offten spits back out after half chewing it with a disgusted face.