To feel to fly off the handle at GP tomorrow?

[Mummaofboys93]

This might be really long winded.

My DS is 10, he has since about age 3 always had issues around food. He is extremely fussy, there is little he likes & what he does like he eventually goes off of to the point I am running out of options for food. My younger son eats bigger meals than he does & he is 5! Ds1 eats maybe about 3/4 mouthfuls of a meal before he says he is finished. It's gotten to the point he hardly even eats crisps & told me yesterday that chocolate is too chocolaty!!

I have since he was 3 been back & fourth to the GP voicing my concerns about his weight, the lack of food he eats ect. I have been told by multiple Dr's that it isn't an concern cos I am slim?! & to just give him the food he wants!!! I am slim yes, infact I have spent a good part of my life underweight, the difference being is that I have a chronic health condition, something my son doesn't have as I was born with it & my DS was tested for it at birth & to tell me to just feed him what he wants is all good & well but it is so now so limited & the amount is awful! He can be sat for 45 minutes & his plate looks untouched, even the way he eats his food I find odd. It is tiny bites or forkfuls. For instance this evening he had meatballs & to eat one meatball he probably took 6 little bites until it was gone?!

He is in the middle of being assessed for possible things like ADHD, I voiced my concerns to the people we see for that & they said although he is underweight he doesn't meet the threshold yet for any dietician intervention this was just before the first lockdown last March.

I literally feel like screaming at the GP!! I am so concerned for his health. It keeps me awake at night. He is as pale as they come & he is literally skin & bone. His clothes hang off of him, I have started to notice he is becoming alot shorter than his peers at school where I now think its effecting his growth. I don't remember the last time I had to buy him new clothes cos he's grown out of them, I literally buy him new stuff cos his older stuff is looking worn!

I am again going to contact my GP tomorrow saying I have weighed him recently yet again he has lost weight. (2nd centile)

I have tried talking to my son multiple times as to what is it that he struggles with when it comes to food & he just shrugs at me & looks at me as though it's going in one ear & out the other. I literally feel at my wits end that nobody will help me & I am so concerned about his health.

A dietician won't help him. He needs to see a cbt person or something, like on that freaky eaters tv programme.

I had a very underweight DD who didn’t eat much at all . Had been born very prem so was off the chart weight wise for a long time . Every meal time was awful - hardly anything eaten at all . Just tiny bites eaten at a snails pace . We got a referral to a dietician and she was really helpful.
Our paediatrician actually told me that she didn’t fit the referral criteria either weight wise but she could see how stressed I was and that it was having an impact on me so obviously I was very fortunate . A quick summary :

1. Her first rule was to make meal times not last longer than 15 mins or so . She correctly guessed that we sat there for ages hoping that a few extra calories would be ingested ie the odd raisin . She said that a child tends to eat 90 per cent of what they are going to in the first ten minutes ;
2. Obvious point about not making meal times battlegrounds - hard when you are desperate as I was and you sound . I really know how counter intuitive it is to end a meal when all you want them to do is eat something more.
3. She gave lots of suggestions for hiding calories in food such as the most fat laden kids yogurts and things like that ( eg Yeo Valley kiddies yoghurts which though expensive are really high in calories ). Fortunately DD developed a liking for these and custard.
4. She said don’t fixate on social norms like cutlery etc and types of food for different types of meals . So my DD only ate finger food for years .

To be honest I was an extremely fussy child who hardly ate anything - I now eat almost everything abs probably too much . My DD also eats loads of things now and with cutlery !! . I hope that you get the support you both need . If you can afford it I second going for one private session . We only got the one session and it helped so much . Good luck .

Depending on what area ok the uk you are in there is an excellent complex feeding clinic at Southampton children's hospital. Made up of gastroenterology (dr and nurses) dietitian, psychology and play specialists.also they have access to bursledon house inpatient unit if needed.i hope your gp can refer you on to somewhere like this if more support is needed.

Can you get school to intervene and put a referral in?

All flying off the handle will achieve is you having to find a new gp.

Have you tried liquid nutrition?

My second Ds was like this and they told me to just feed him what he would eat and to try to offer food little but often.
No big meals on a plate but smaller portions.
He is 22 now and still a very fussy eater and skinny as a rake.

Im an adult with ARFID, I had spend years trying to work through it. I went to see Felix Economakis at 30 and it changed everything, it was a lot of personal work but my diet is much better.

Iron deficiency can cause lack of appetite. Though I wouldn't supplement if you don't know he's deficient, as free iron can feed potentially pathogenic bacteria.

Yes you can request if you have reason! Him being very pale would be your reason. Does he look greyish or just very light? Does he get tired easily?

Find out what’s available and check the criteria locally, afrid may be applicable but as far as I’m aware it’s not widely diagnosed on the nhs (although it is recognised).

However, you also need to make sure that food is relaxed. Try to identify patterns of what he likes and go with that. Does he have issues swallowing or sensory issues around food?

My DS is very particular about how food is because of pain and gagging as wel as sensory issues. I had all but given up hope having tried to get it for years and he’s finally under a team a didn’t even know existed. Some foods have to be prepared in specific ways, food can’t be mixed up etc. It’s annoying but it’s how he needs it to be.

That sounds a very difficult situation. I was in a similar situation 11 years ago.

My dc struggled to eat, vomited after every meal, would only eat particular foods/in a certain way, hair was falling out. Was tired all the time, still had afternoon naps aged 5. I went to the GP one day and burst into tears and after years of being labelled a neurotic first time mum I was listened to. The following week dc had bloods done, the following month dc saw a specialist, 3 weeks later had exploritary surgery under general anethestic and we got a diagnosis.
I actually cried when they gave me a diagnosis, it meant dc could get treated.
Its not been easy since, dc is tube fed now, on multiple medications however, now maintains weight, is less tired and generally looks healthy.
Dc also later went on to get a diagnosis of asd which I feel was also a contributing factor in food related issues.
Somethings that helped us were
*extensive food diaries down to how many spoons eaten,
*seeing a dietitian and getting prescribed milkshakes and mousses (with all the nutrition in) - which meant less pressure on other food intake,
*symptom diaries,
*probiotics in tablet form,
*repeatedly going to the GP,
*monthly weight and height at home which we tracked,
*smaller more regular meals, so ate 5 times a day but this might only be a piece of fruit, soup, slice of toast.
Basically we needed evidence, I even took pictures of food to show what was being eaten.

@Mummaofboys93

My eldest has very similar issues. I have explained to many about his very limited palette, picking at what he does like, worried about weight gain. Most people (both medical and not) reply 'well he eats chips and beans* so what's the issue' . The issue is even if that's his very favourite meal, he'll eat 2 spoons of beans and 5 damn chips and push away the rest! Luckily, I have a very sensible HV who agrees there's certainly SPD presenting, and autism has been mentioned. Starting a new school was a nightmare, they nodded and claimed great understanding of sensory issue at the open day, but since then seem to do nothing but moan that he takes ages to eat, refuses snacks, won't wear certain clothing.... I absolutely understand the want to bloody snap at people at well.

AIBU isn't the place for this, unfortunately. There is little tolerance for what people not in our position consider 'fussy' behaviour that can be fixed with a bit of firmness or think GPs are infallible. Sometimes, especially as a woman, you need to be on the angry side of firm (without being abusive or rude, but that really doesn't need qualifying). It's the only way to get listened to.

(*example meal, not what the child eats morning to night).

I have food issues, and both my siblings ate far more than me. For example my packed lunch for school was one biscuit and a drink because that was all I ate.
My sister would have: 2 large rolls, a piece of cake, fruit and still be complaining she was hungry.
My brother would have 2 slices of bread, flask of soup, sausage rolls, cake and a carrot.

What helps me:
No expectation to eat. As soon as you expect me to eat my appetite goes.
No pressure to "just finish this bit". Even now I hit a point I can't eat more. Sometimes it's literally one mouthful away from finishing the lot. Sounds silly but it really does make me feel sick.
Snacking. Dm went through a stage of trying to stop me from taking any snacks in the hope I'd eat a full meal. It actually worked the other way. I actually lose hunger pains if I'm hungry for too long. What she found was more effective was making sure that I could snack when I wanted-so she'd have healthy snacks and a few treat ones.
Letting me take something to try with no pressure to eat it. She found that if I was able to say "no I don't like it" after one mouthful and leave it, then I was far more likely to try it-and to like it.
Don't insist eating something you know to be good for them, but they don't like. All it's achieved for me is a tendency to retch/vomit near brown bread and mashed potato.
Listen if they tell you that they don't like something done a particular way. I don't like salad in sandwiches. Still don't. I never appreciated it even though dm thinks it's a bit of a treat.

Have a treat food. Favourite for mine was a chocolate milkshake. You can put ice cream/cream/chocolate on top for extra calories.
Looking back I can see that I got one when she thought I hadn't eaten enough. At the time I just thought she'd done me a nice treat. When I had the milkshake, I'd often nibble at the rest of the meal and eat more.

Sometimes letting a non-healthy food along side helps as well. I was an adult when I found that I can manage to eat bread if I eat them with the crisps. It helps with the bread texture that I struggle with.

Try to get the GP to prescribe Ensure drinks. They're ok once chilled (horrible when at room temp).

This must be so hard. I had some issues around food as a teenager. What are the portion sizes like that you give him? I only ask because what I considered too big would overwhelm me. Just looking at it would make me feel sick and a knot would appear in my stomach so I couldn't eat. Have you tried serving up meals in a way that he can help himself? Or at least where you just give him a tiny serving if you are tracking. You've probably tried this but does several small meals/snacks rather than three a day make any difference? Could you make the protein shake a bit thinner if he struggles with them and just give them more frequently in small quantities?
Does he drink a lot? I 'had' to have lots of water/juice with meals but really these were filling me so much I could hardly eat any food.
Other areas to rule out, does he have any sinus issues? These can be related to acid reflux too. Things like a nasal drip can make swallowing difficult and it feels like you have to do this to breathe. Combining this with eating can make it an unpleasant experience.

I feel for you having been there, @Mummaofboys93

If you are considering going private, I can recommend an excellent paediatrician in London who is part of a clinic that offers eating disorder support, ADHD and ASD services, child and adolescent mental health, as well as general paediatrics. If you are paying, I would really recommend seeing a specialist, even if that means travelling.

A tip for the Complan, it is a lot more palatable served ice cold (it is a less strong taste), especially if mixed with a scoop of good ice cream or fresh fruit (for the fruit flavours). We also made homemade lemonade with Maxijul.

The biggest hurdle is trying not to show your worry and stress, making things worse and mealtimes a battleground. I know how hard imposible that is though...

My daughter is exactly like this. Everything you said rings true. She eats strangely, tiny tiny mouthfuls, often uses her fingers. She doesn't eat more than a few mouthfuls each meal. I constantly worry about her 'safe' foods dwindling because the more frequently she eats a particular food, the more likely she is to go off it. Actually for this reason I try very hard not repeat meals too often even if I know she will eat very little of what I put in front of her. It can be a vicious cycle. We've had problems with school saying 'just send her in with anything she will eat - we don't care what it is' but there is not a single thing that will go in a packed lunch that she will reliably eat. Literally nothing. She has been this way since she was a toddler. At the moment she is stick thin (10 years old and 22 kg) but my rule is as long as she has energy and is happy in herself, Im not going to worry. A long time ago I decided on an approach which I do stick to and may be useful to you. I decided to focus on making meal times enjoyable for her in the hopes that in the long run she will eat more because she will be relaxed and happy. So I never watch what she eats ( even sit quite far away from her so I don't get anxious about how little she is eating) and only occasionally prompt her to eat (like once a meal time). We all eat together as a family for all meals and I make a massive effort (candles, good chat, low lighting, music). I put new things in front of her often but always with things she feels comfortable with and involve her in cooking and baking. We sometimes do special nights like Mexican night or party night and present things differently. I let her leave the table when she wants. I've tried giving her shakes and high calorie drinks but the idea she would drink those is really laughable. Despite all my efforts she eats very very little but I think maybe this approach is just keeping her afloat health wise and every now and again she will actually eat something new (and I fall of my chair).

OP, this does sound very worrying. A friend has a disabled son (now in his 30s) and she literally had to fight for everything. You do sometimes have to be incredibly persistent.

A pp has mentioned going private, I do know people who have gone private just for the first consultation, the specialist they see then adds them to their NHS list, so you don't have to pay for the full treatment. Might this be an option for you?

I'm sorry your GP is.not being helpful. Your son sounds like a good friend of mine, diagnosed with autism as an adult. As a child he had serious issues around food which were exacerbated by his upbringing. In adulthood he became more able to tolerate different textures, and to tolerate things being on the same plate. That said there are still a number of 'normal" foods he won't eat because of sensory issues.

Are you saying he doesnt meet the criteria for referral because hes not obese. I feel for you and your ds. I feel I would go private and have a scan of his stomach etc, and oesophagus to check nothing untoward such as ulcers. We have an Autistic child who barely eats anything. It's a scramble to buy a food that we notice she will eat. No good will come of shouting at a doctor. Maybe ask if a scan of his digestive system would help the lad and you.

One of my daughters ate very little, she liked bits of carrots, salad, cheese and bread. Even when she was a baby , she was right at the bottom of the scale, and the young health visitor told me to give her cake and biscuits. Being sensible and an older mum, I ignored that. She was very active, and always wanted to go off to do more important things. She was a slim teenager and is now a beautiful young woman.
She still eats very healthy food, and picks at a chocolate cake with a fork. Children don't starve. In fact, you being stressed about it may not change anything but do you harm. Give him healthy food and let him leave it, we all don't need the same amount of food. When he has a growing spurt in about 5 years time, he'll make up for it. My friend's son used to insist on tomato ketchup sandwiches everyday for lunch, and sometimes only have two fishfingers for dinner. He's now a slim, healthy young man of over 6ft.

I’m so sorry OP that’s awful.

Obvs you aren’t really going to scream at GP but perhaps a written complaint to Practice Manager? Maybe ask what formal complaints process is?

GPs don’t know much unless it’s an obvious infection. The question is: who can they refer you to? What tests can they do? Ask them. Has he had any investigations to see if his stomach/guts are ok?

Also consider private I got nowhere with NHS for my stuff. If private find an issue they can refer you back to NHS but at least you get a decent opinion not just a patronising ten minute ‘don’t worry.’

Thank you to everyone who has been replying with suggestions & those of you sharing similar stories. I cant reply to everyone as I'd be here all night 😂 But I am reading everyone's replies & appreciate appreciate all.

For those of you who think I'd actually scream or kick off with my GP, of course I wouldn't! But I am concerned & frustrated so I think me mentioning my frustrations firmly wouldn't be uncalled for at this point.

This reminds me of my friend's son with the growth slowing down. It was a thyroid condition that was missed for a while, but once treated he started to grow again and is now pretty tall at the age of 17

When I get frustrated and angry, instead of kicking off, I usually end up breaking down in tears. I suspect that is probably where you're at too.

Could you write down a list of what you want to request?
Bloods
Referral to gastroenterology perhaps
Referral to dietician
Measurement of weight/height
Ruling out any ASD
Prescription of nutritional supplements

etc. etc. Others might have better lists of what to ask for

He sounds a lot like my uncle.......he's in his 70s but does eat. He just doesn't see the point in it. We've taken over making sure he had meals because he'd become worryingly thin.

He used to have his meals out because it gave him a routine but with lockdown all that went out the window and he'd make himself a salad sandwich if he remembered

His record for time eating a meal is two hours. He missed the bus home and ended up sleeping over

And your right OP, it isn't normal. My uncle has a lot of stomach issues as a result.