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.

Have you tried 'adding calories ' to the food he does eat? E.g extras butter on toast, a spoon of single cream in his milk/ cereal.
Also i suggest you supplement with vitamins and fish oil (can buy from boots) as he most likely will be lacking as he doesn't have a varied diet.

never said you shouldn't be worried!! but does not warrant 'flying off the handle' at NHS staff does it??

or ANYONE

If he doesn’t meet the criteria for a dietitian referral then they won’t accept the referral, even more so at the moment when staffing is low. I see you’re just worried for your son but I think you’re being unfair to blame your GP.
Is your son growing?

Does he have stomach pain or issues? My step son was skin and bones until we got his allergies sorted. He had endless stomach problems so avoided food. Once sorted he ate like a horse but it was years of worry before

I’m a HCP. Flying off the handle is rarely justified and isn’t going to get you a better service than bring calm and reasonable.
That being said, I totally understand your frustration. Your son really does need a dietetic referral. In the mean time could you try some complan or child equivalent to add in some nutrients and calories? These are some of the things we recommend to help patients to gain weight (actually post chemo but still useful. You can Google the building up diet book) full fat milk, fortifying milk with extra milk powder, maple syrup on breakfast, adding cream to mash potato and topping with cheese, adding protein powder to food and drinks. Essentially what your DS does eat can be fortified as an interim measure till hopefully you get some proper help.

Does he have any sensory issues?

If he’s dropped percentiles that should ring alarm bells. No child should be crossing percentiles or losing weight. It also sounds like his growth is now being affected.

She has every right to voice her displeasure at the GP. Eating disorder knowledge and understanding is notoriously poor and often completely outdated in general practice, especially when it comes to boys and people are constantly fobbed off. Eating disorder services are in crisis and CAMHS in particular is a postcode lottery as to the standard of care being delivered.

Have you tried getting a second opinion from another GP? Or can you ask for a referral to a paediatrician? They’ll be better equipped than a general doctor to deal with children in the 2nd percentile. Good luck!

@Spudina

I’m a HCP. Flying off the handle is rarely justified and isn’t going to get you a better service than bring calm and reasonable. That being said, I totally understand your frustration. Your son really does need a dietetic referral. In the mean time could you try some complan or child equivalent to add in some nutrients and calories? These are some of the things we recommend to help patients to gain weight (actually post chemo but still useful. You can Google the building up diet book) full fat milk, fortifying milk with extra milk powder, maple syrup on breakfast, adding cream to mash potato and topping with cheese, adding protein powder to food and drinks. Essentially what your DS does eat can be fortified as an interim measure till hopefully you get some proper help.

I am jusybat my wits end. I wouldn't kick off with them, it's not in my nature but the want is there so to speak as I am concerned for his health. I did add things into his food extra butter, cream ect. I did buy Complan for hin which did start of well, he enjoyed them, but eventually he would start heaving at just having a sip of it. I shall have a look at that building up diet book. Thank you.

I've namechanged for this as I know rl friends on mn and this may out me.

Oh OP ! I have this with 9YO DS ! Infact I was nearly convinced this was my DH writing this post at the start !
We had a referral to a paediatric 'feeding clinic' not sure if that was the exact name but we seen a multi displinary team of paediatric consultants, psychologists and a dietician over a period of about 2 years between the ages of around 4-6 and where then discharged but to be honest nothing had changed, pretty much the same advice as you...give him what he wants to eat.
He only eats the same foods and has done for years and like you the menu gets less and less and he excludes more things. He literally now will only eat potato products. He won't eat any meat or vegetables and he is incredibly fussy with sweets and chocolate as well. We also have a 4 year old who has no issues with food and eats a normal healthy balanced diet so I don't feel like it is anything we are doing wrong.
He was always a big baby nearing the top end of the centile lines. I did his weight this time last year and he was almost 21kg and I noticed lately that he looks terrible, he is so incredibly pale and so so skinny that none of his clothes fit even tiny waist clothes just fall off him. I weighed him again last week and he is down to 19.5kg which puts him under 0.4 centile now.
He is also struggling a lot with bowel movements now between constipation and severe diarrhea and nothing normal inbetween. I contacted the GP last week and we have been booked for bloods this week and then we will see the GP the following week to discuss the results and to see where we go from here.
To be honest more than anything now i am worrying about this becoming more than just a fussy eater now he is older and that this could already be or becoming an eating disorder.
I don't think you are unreasonable to be putting pressure on the GP.

I strongly recommend you find the thread on here from last month about a poster with ARFID. Her experience will open your eyes to how your son feels about food. She feels no hunger. Ever. She drinks protein/nutrition shakes because the act of eating is too much. Not enjoyable. I got the sense that it felt like an alien behaviour. As if someone in authority told you that you had to eat small bits of paper and plastic to survive. That it's good for you. You might do it to appease them, but wouldn't actually want to.
She hadn't been diagnosed with autism, but other things in her life suggested she could be.
Lots of posters joined to say that their DC (all mentioned autism) were the same.
There wasn't anything medical that could be done, apart from some GPs were able to prescribe nutritional milkshake drinks such as Fortisip (but not all). They are available online too.
By the way, if your GP won't do blood tests, you could look at the online services such as Thriva. I check vitamin D and thyroid with them (around £55). There are usually sign-up codes around.

I totally understand your frustration . I suspected I had thyroid disease but for 5 years my doctor would not listen . In the end I demanded a test ( was not rude) but just said they were not listening to me . And I was right .

I think you should at least ask for blood tests to make sure he does not have deficiencies .

If you get no joy I agree ,if you can afford go private.
We paid for a private consultation for our grandson at great ormond street for a problem .they were brilliant and then it ended going back to nhs treatment . It was getting the diagnosis that was the problem .it was about £300 for the initial consultation I think .

I second @zzizzer 's idea of sending a male relative to the doctors. My daughter's health issues have been dealt with swiftly and taken seriously when my husband goes, but I always get fobbed off. The bias seems to be there with both male and female doctors and is very real.

Get a second opinion from a different GP. If there are no new GPs at the practice then switch to a new surgery, ask friends and family for recommendations. Send a make relative with a printed out copy of his notes from the current practice, and definitely ask for full bloods to be done. At the very minimum try and get them to refer to paediatrics.

@DianaT1969

That’s a good idea about blood tests as well . Medicheck or blue horizon are good as well .

*when I said there wasn't anything medical that could be done, I meant for her. Neither she, not her parents had had found anything that helped.
She was grateful that her mum didn't make a fuss and in her words "indulged" her fussiness.

Dieticians can be very helpful. I have to hide certain foods otherwise he just refuses to eat and even gags. I use carrot purée in tomato pasta sauces. Adding almond meal in food as nuts are so high in calories. Avocado oil is a good fat to use to fry food to add calories. Filled biscuits.Our dietician actively encouraged frying food and adding fats to his diet as otherwise he just won’t put on weight. Hope this helps as well. It is so worrying when you child is drastically underweight it consumes my thoughts day to day.

@DianaT1969

I strongly recommend you find the thread on here from last month about a poster with ARFID. Her experience will open your eyes to how your son feels about food. She feels no hunger. Ever. She drinks protein/nutrition shakes because the act of eating is too much. Not enjoyable. I got the sense that it felt like an alien behaviour. As if someone in authority told you that you had to eat small bits of paper and plastic to survive. That it's good for you. You might do it to appease them, but wouldn't actually want to. She hadn't been diagnosed with autism, but other things in her life suggested she could be. Lots of posters joined to say that their DC (all mentioned autism) were the same. There wasn't anything medical that could be done, apart from some GPs were able to prescribe nutritional milkshake drinks such as Fortisip (but not all). They are available online too. By the way, if your GP won't do blood tests, you could look at the online services such as Thriva. I check vitamin D and thyroid with them (around £55). There are usually sign-up codes around.

I'm off to look for this as well. I have recently as a result of home learning and spending more time with DS been considering bringing up with school about autism. I didn't draw a connection between my concerns around other areas of his development and the issues with eating but now reading your post it seems obvious that both could well be connected.

I’m afraid to say I was probably the child in this situation, my mum was always worried about diet/ eating disorders and I would happily not eat. I think now that it became a bit of a battle of wills, and maybe I just also liked different foods to the ones at home. I think there can be a lot of different causes of the same problem, I’m surprised camhs don’t have any specialist service they can refer to. Have you joined some of the adhd/ learning differences support groups you may get good advice there

Hi OP, this must be so worrying for you. There is some really good advice on here, ‘graze plates’ may be worth a try rather than set meal times with traditionally larger portions... literally a tray/plate with a selection of foods that may appeal to him left in the room where he is whilst watching TV/playing/reading whatever, no pressure is put on him to eat any of these foods and no praise or comments are to be made if he eats any. It’s a ‘no pressure’ approach which may be worth a try if his food aversion is anxiety related. Sarah Ockwell-Smith has a ‘gentle eating’ book which may be worth a google. Hope you manage to get some help and support soon OP.

I am sure if it was your DC who has done nothing but have issues around food since they were 3 & has constantly lost weight & is now running out of foods they'll even touch you would be worried about them & frustrated that over the last 7 years next to nothing has been done to help?! As I said, I have spent alot of my life underweight due to a health condition. I have been hospitalised because of it, needed feeding tubes stuck up my nose & one surgically put into my stomach just to help me maintain a healthy weight to keep me alive. So when I have been on the receiving end of the effects of being underweight, I think I am within my rights to be worried for my sons health & annoyed at the GP.

It is not the case that they have done nothing. You have been told that he does not meet the threshold for a referal. That is not their fault - that is the threshold that is laid down. You already know that your own health issues are nothing to do with it, and so yes, you may be concerned but no - you don't have the right to be annoyed at the GP for something that is beyond their control. So if you want to fly off the handle at the GP then fine - you do so. You will probably be deregistered from the surgery and banned from going there. That will make all the difference. The GP can only operate within the clinical guidance that they have. So you can have a reasonable discussion about what they may be able to support you with, or you may as well not bother going because your current plan of action will not get you any further forward.

I'm not expert but the fact you e mentioned a few times that he will start with a food ok and then start gagging makes me think it's anxiety issue. I would mention this to the doctor if you haven't already. When the doctor says they can't refer you ask them what is their long term plan for your child because it can't be for him to keep loosing weight. I'm so sorry you are going through this and I really hope you get some help. Also when having the conversation with the doctor if you aren't happy with what they have said tell them at the time and say we need to come up with something else because I don't think this will work

I found the thread, but links don't work on my Android app.

It's from 2nd February titled "I have an eating disorder called ARFID, AMA".

It was enlightening. I hope you can find it on Advanced Search.

It does sound like a complex issue but if it helps, once someone is anaemic they'll lose their appetite so it can help to make sure their multivitamin also includes iron. If you can improve his nutritional status with vitamins/shakes etc you might find his eating improve a bit then too.

What input have you previously had from your health visitor and school nursing service?

This is so hard. DD1 (15, SN) is under treatment finally after a similar history. One thing that I would say is that any eating disorders team is going to suggest a '3+3' plan. That is, 3 meals, 3 snacks, every day.

DD1 had got down to 1½ meals and maybe 1 snack, if she felt like it. Once she was admitted to hospital, she knew it was 'Eat the meal. If you don't eat the meal, you have the same calories in a Fortijuice/Fortisip drink. If you don't do that, we'll give you a NG tube.'

We don't win every meal. Her diet is shocking in 'health' terms: Double cream, whole milk, yoghurt, and cake make the majority of her daily calories. But she's put on 700g in the last 3 weeks, which is progress.