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.

It's not the GP you'll be flying off the handle at though, is it? It'll be the receptionist who has no control over what can be done for your son.

Look at. ARFID. Avoidant Restrictive Food Intake Disorder.
Some of it sound very similar to my relative who has this.
It started as a very young child. Still isn’t over it and can be a lifetime condition. Therapy is sometimes not put forwards by GP as ohh they aren’t underweight enough. One thing that really helps is have food available. Pressure to eat at certain times can exacerbate the problem. Pressure to eat can lower their appetite.
If they don’t want the food let them leave it. Don’t have them sitting for ages putting more pressure and anxiety on them.
It has to be diagnosed by a consultant. This can take years. Giving vitamin and mineral tablets keeps them from getting too low.

And being rude to people who's job it is to help you usually makes them less inclined to help

What a great worry this must be.

Can you describe how your child is in general from the point of view of sleeping, waking, activity, disposition etc?

@Princessbanana

I would be supplementing his diet vitamins. What is it you want the doctor to do? Maybe he could refer him to a dietitian?

Presumably to show some interest in a child that isn't eating properly and make a plan to look into it? I don't know whether dietician should be the first option, and maybe OP doesn't either. One would hope a GP might - that's what they're qualified in, and paid to do.

lougle our local eating disorders team won't see Ds because they suspect ARFID and it's not within their remit. He's 49kg at 6ft and low in energy. I'm hoping we can get help from the sensory OT now.

My money is on this being psychologically based.

Do you ‘fly off the handle’ at your son when he won’t eat, by any chance?
I had parents who did, and I had a full blown eating disorder aged 10 as a result. Perhaps you are calmer.., but it’s a massive amount of performance pressure on a child - knowing you can’t do what they are telling you to do (because you’re so anxious you just can’t) and knowing each day is a battle with one meal after another.
Get the book “how to get your kid to eat, but not too much”, it has helpful information.
You have to completely change the atmosphere and lay off.

YABU to fly off the handle with your GP. They are not there to be abused . They have to follow referral guidelines. Try having a calm conversation.

I understand your worry but you did ask the question AIBU ....

@Mummaofboys93

Complan does taste horrible . Have a look at puriton shakes . They do a sample box and the favours are much nicer . Perhaps try with different milks as well .,

I always thought if you had CF you were unable to conceive?
How ignorant of me but fantastic for those with CF!
I would request bloods and referral to salt. Most referrals take 6-8 weeks to process but there's likely to be delays.
If the do refer, ring back a week later to check they pressed the send button.
If they refuse to refer and suggest a watch and weight type alternative, go private.

Hi OP, you said that you have CF... I know that your son is under CAHMS. I’m in Aus, so I’m assuming that is assessing him for ASD or eating disorder or even MH issues, like anxiety?
I understand that your son has grown up watching you have a very complicated health regimen because of your CF, (including a struggle to get in enough calories of your own) along with that comes the extra susceptibility to infection, etc.that must be a massive worry at this time. Is it possible that your son has developed an eating disorder as a form of secondary health anxiety? Kids are observant and process things in weird ways sometimes.
I’m not suggesting that you relax and give up at all, but maybe rephrase the urgency around the eating. Make it more enjoyable and less of a panic. See if you can make it a more relaxing and enjoyable process for everyone (yourself included - or at least seem like it is...) and see if he begins to relax a bit about it all.

YANBU at all. Insist on tests and a referral. Make it clear that you will complain if you aren’t referred.

I took my daughter to the GP with poor appetite and poor growth about 4 yrs ago. She was referred to an endocrinologist and a simple blood test showed she wasn’t making sufficient growth hormone so her appetite was depleted. She has been on medication since and now eats fine and is the right weight / height now. It’s a genetic condition.

@MrsMercedes

tabu to fly off the handle at anyone....don't you think those working with the public have had enough of that behaviour!? they are people too

Agreed

My eldest child is autistic and has food sensory issues since he was a toddler. He was also underweight and smaller than other kids. He has caught up height wise now but is still quite light weight wise for his age.

I think you need too find out if your local NHS has a dietitian that specialises in sensory issues. My son was referred too one and if really helped. If possible try fill him up with milkshakes. It’s what I did too bulk up my sons calories. I recently changed my sons diet too gluten free and he is eating way more. Gluten seemed too bloat him which made him feel really full fast. He would often come home with his school lunch bag barely touched but now eats it all. This might not be so easy but maybe you could substitute chocolate for gluten free etc?

It sounds as though they're looking at you and assuming it is mostly a result of his genetics to be small/slight.

If his father is a bigger build, I would suggest that he takes him in and says he wants it referred on and investigated further. That way, not only is the chance of misogyny affecting their interpretation eliminated, they can see that he isn't just a small child with a small appetite. And it also confirms that it isn't 'just an anxious Mum that needs to be reassured'.

Do people really think the Op is going to literally fly off the handle 🙄
She’s worried and frustrated and their is obviously a problem with her son .
I understand how you feel Op , fear and worry about your children is awful, I hope you get the help you need .

• there

There is a group called mealtime hostage on facebook that may be able to help you. Although the group is keen on the DOR philosophy, the parents there have seen everything and will have good suggestions. If nothing else there will be solidarity. I have a beyond fussy eater and you have my sympathies

Have you tried a different GP? Sometimes some have more experience in certain areas than others.

I have a DD who’s very fussy and will only eat certain foods (possible autism). I do find the more pressure I put on her to try different food the more she refuses.
Whilst you are trying to get help from the doctors it might help to give him higher calorie food by adding cream etc and not making anything of it, just eat as a family and don’t fuss or look like you’re watching him eat. It may not do any good but it might be worth a try.

How many GP's have you seen? I've not been in your position but I feel that I would visit many different GP's until I find one that is taking me seriously.

If you have already done that and they are all saying the same thing then either their hands are tied by the red tape that determines the thresholds or it's time to go private.

@Punxsutawney

lougle our local eating disorders team won't see Ds because they suspect ARFID and it's not within their remit. He's 49kg at 6ft and low in energy. I'm hoping we can get help from the sensory OT now.

It's really hard. DD1 isn't diagnosed yet, but was admitted to hospital because her weight dropped too low.

@nitsandwormsdodger

... I'm sure you are not serious about screaming st your GP? They don't deserve that

Well maybe not screaming, but I'd be pretty pissed off with them by now. If they referred op to SS for her kid being underweight and her doing nothing, the kid would be taken off her. But it's OK for the gp to not give a damn, when they are the health professionals that should be caring. Of course its not OK, but they get away with it.

I would try little and often with him, not set meal times. Too much food is maybe overwhelming to someone who isn't interested in eating, so he eats less. And maybe try going private if you can. Some GPs are just useless, sounds like yours is sadly.

Sorry to hear you aren't getting much help on NHS.

My DS has a very restricted diet and my husband took him to the doctors as he was down to 4th percentile BMI and he did get referred to a specialist who said they would intervene if he got down to third percentile.

They did tests for coeliac disease and also asked us to restrict diet to test for lactose intolerance and they suspected he had lactose intolerance. He is suspected autistic. We were also told to get him to eat anything to get his weight up which worked for weight. He will only eat food that doesn't touch so leaving bowls of food around her likes can help - like a bowl of fruit, another bowl of crisps, another bowl of biscuits but say nothing. He was very obsessed with counting so sometimes if I'ld say who can eat 51 peas quickest he would eat them. I also did vitamins which isn't ideal but better than lacking them.

I would keep pushing for testing or go private - I would try sending your husband or try a different doctor or put a complaint in. Hope you can get help for him, definitely sounds like he needs more help.

I have a DS with ASD, who has massive food issues, my drs referred us back to feeding clinic 2 years ago when he dropped below the 2nd centile.

Instead of focusing on which centile he's on, have you tried checking whether he's dropping? We've been under dietician 3 times, and in my experience they won't refer until the start dropping down the centiles.

But it sounds like his issues may be sensory. My DS only eats 12 foods, but I find he'll love something and eat it constantly, then suddenly refuse to eat it. We don't make a fuss, we just stop it for a few months, then try again - sometimes he'll restart eating it, other times he won't.

A big thing for my son is cutlery - are you using metal cutlery? If so, try a plastic set, my DS eats far more with plastic cutlery because he can't stand the sensation of metal in his mouth.

We give vitamins, but DS always looks pale as his iron levels are low, and iron supplements tend to taste awful! Dietician recommended the vitamin boost bread - 2 slices of that per day contain half of his recommended iron intake.

Also, what about cereal? Our dietician encourages us to give cereal for breakfast and supper, because even the sugary cereal is heavily fortified, and the nutritional benefit outweighs the sugar issue (because he's below the 1st centile not sure this would apply to everyone - as she points out malnutrition would do a lot more damage to his teeth!) A couple of them are high in iron too, which might help with the paleness. DS's favourite is golden nuggets which has loads of iron it in.

If your keeping a feeding diary, can you figure out what his issue is? For example, my DS likes beige, smooth food, whereas my ASD DD likes crunchy foods. If you can figure out what his sensory issue is, it may help you find similar foods.