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.

Sounds like a behavioural/mental health issue rather than physical in my personal opinion.

Does he have insecurities about how he looks? Perhaps (and please don't take any kind of offence at this) he's seeing you eat very little and is subconsciously mirroring your behaviour around food and is worried that if he eats more then he's greedy/going to be overweight etc etc? I realise your weight is down to CF but at 10, he may not make the correlation that your weight is as a result of CF? Just suggestions

@CoffeeBerry

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

My cousins have a similar condition. Diagnosed a bit late but given growth hormones. I didn't want to suggest it here as the lack of eating would account for the slow height gain. But it certainly could be something to add to the list of what you would like the GP to look into.

Btw - GPs don't like it when they feel like you're telling them what to do and have spent too much time on google. Be self-deprecating when suggesting possible referral routes. I find you'll get further that way.

As an aside my uncle does have Autism too.

@Awaywiththeclouds

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.

OP has stated that she already does supplement with vitamins

@orangenasturtium

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...

If again not luck with GP then yes, I will consider going private. That would be really helpful of you, thank you.

I will try again with the complan but try it wil ice cream.

I try so hard not to even mention his issues around food as I don't want to make it into a big deal ect. But on occasions I am guilty of probably pushing him to eat a little more ect.

Only recently I have asked the question why don't you like to eat much? Which was more to see if I could do anything to help, like if it was taste, texture, the fact he gets full quickly ect. But he tells me it's none of those things & that he doesn't know & I just left it at that.

Also, and again please don't take this wrong, but the weighing him all the time will only serve to cement any insecurities he may have surrounding his weight and will likely lead to him becoming overly conscious of it, thus making all this lead to anorexia ever more likely

His tummy will be quite small so he won't be able to handle big meals.

Is he lethargic or has he good energy levels? Sleep pattern ok? Bowel movements ok? Peeing normally?

It's a tough one as it does suggest something psychological.

Incidentally, and this is way out there, does he have a small mouth when he opens wide? And secondly was he late getting his first teeth?

It's medical gaslighting at the end of the day, it's so frustrating to not be listen to or heard over something deeply concerning. I 100% understand your feelings.

As others have said about meal replacements etc there are so many flavours on "my protein" maybe little protein balls he could nibble, and cookies, would he choose some online? And have some control over his food?

May feel lest medical and "meal replacement" to him and more strength building and it's pretty masculine branding on some, so may appeal in some level.

@RuledbyASD No offence taken for either of your posts.

I had thought about the effect my CF may have had on him but as he is being assessed for things like ADHD ect they have discussed my illness with him & how certain things that are an issue to me aren't an issue for him. As I was always worried he'd get some type of health anxiety with seeing me get unwell. So I do hope that isn't the case with him, I tend to make myself smaller portion sizes so I don't often look like I am struggling but then I don't know if maybe he looks at that then assumes maybe he needs a smaller portion than what I give him 🤔

With the weighing thing, I try involve us all. So when I weigh him, I will also weigh his brother & do their height & mark it on the door frame so it seems more of something fun. We will try guess the weight. I never say oh you've lost or gained.

@typicalvalues

His tummy will be quite small so he won't be able to handle big meals.

Is he lethargic or has he good energy levels? Sleep pattern ok? Bowel movements ok? Peeing normally?

It's a tough one as it does suggest something psychological.

Incidentally, and this is way out there, does he have a small mouth when he opens wide? And secondly was he late getting his first teeth?

If anything he has alot of energy. He also doesn't need alot of sleep to be able to go all day. He is more than able to keep up with friends & he doesn't struggle if we have been kn a long day out. He is under camhs for possible adhd.

A blood test isn't much to ask and would at least give you a snapshot of his health - if he's in good health despite very low food intake that would be a comfort at least.

You wouldn't be unreasonable to ask for that.

You're right to be vigilant as when puberty hits they can shoot up at an alarming rate and they need more calories one way or another.

My DC is ASD / PDA and food is an issue for them. They don't take when they are hungry or thirsty (interoception). I recognise certainly the going on and then off foods. We have found that things like letting them eat while they are doing something else like gaming helps - I remember feeding them in the bath when they were a toddler. We have linked food with gamng which is their passion - so a game they play a lot has them collecting items for recipes, and we found a fan created cookbook on etsy, which we decorated their room with. It has been up for a year, and the other day they came in the kitchen and recited one of the recipes and asked me to make it. I also have minecraft based food pictures on the wall, which they liked too. They help cook at times, even if they don't like the food (they love making soup in the soup maker) and we have started to be very matter of fact at times when they don't want to eat but need to eat ("you need a carb and your choices are xyz and a protein source and one veg") They choose the oddest combos but they're happy enough.

The GP was absolutely crap when I had an issue with my DD. I paid to see a private paediatrician and it was all sorted out. They will start the ball rolling and then you can stay in the private system or slot back into the NHS. Trust me, it’s the way to go.

What @dontforgetbilly said...
My eldest was like this - only would eat tiny amounts of beige food and then, it would depend on the texture. He also hated eating with us as we were like an audience watching him. A GP cannot be an expert in every medical issue, so I would go and simply ask for a referral to a dietitian to start with. I would warn that a dietitian won’t be able to change your son’s eating - they didn’t with mine, but it did start a discussion about the different types of food to see whether he showed an interest or not. Good luck - my son grew out of it eventually and put weight on, but I had to learn to accept the beige diet in the meantime!

I second @LondonMiss recomensation of Felix Economakis for helping with this type of eating disorder.
I believe he was one of the original psychologists working with ARFID sufferers on the freaky eaters tv show. Definitely worth a try if you can afford it.

@typicalvalues

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

Tbh for a child yahoo or equivalent is probably going to be an easier way to get a bunch of calories and a decent mix of the basics down them

It does sound like arfid.can you get him to snack between meals.we found small self contained snacks are popular eg cheese strings mini baby bell etc

Yahoo? I presume you mean a Yazoo milk drink?
Ensure contains 12gr protein and all your daily dietary requirements except magnesium and potassium?
Certainly not a Yazoo.
I was prescribed the small ones for people with low appetites.

This is what I was prescribed.

nutrition.abbott/uk/product/ensure-compact

They're the smaller drink as I wouldn't manage the normal sized one. Nutritionally complete for vitamins/electrolytes barring a few.

The strawberry one chilled is what I drank. Expensive to buy, but I was prescribed them. I had it for breakfast usually.

Gosh @Mummaofboys93 this sounds exactly like my 9 year old, and mealtimes are horrendous and always have been until last year when he was finally diagnosed with Sensory Processing Disorder and what's called Food Jags.

Literally he would only eat set things and would gag at anything with a different texture. We now have a 32 step therapy plan to try get him to try a bit more wider variety of food, and he does try but will then not like the food that he has loved and eaten for years. I was told not to make any issues about how little he has eaten but to me if I left him until he was hungry I could be waiting all day, and packed lunches at school were another huge issue. We got his teeth checked and had allergy testing because he was just awkward and it was a never ending battle. Thank god the OT at the hospital understood and slowly he is making some improvements.

His GP did nothing but the school referred directly to the hospital directly for assessment.

Is he medicated for ADHD? As that can affect appetite.

@urkidding

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.

Children do starve. My child is starving. She's 15 and was admitted to hospital 3 weeks ago because she was starving. She had to have electrolyte supplements to stabilise her and I'm having to make her eat 3 meals and 3 snacks per day.

It is completely wrong to say that children don't starve.

It could be physiological involving body and mind, and a vicious circle as lack of nourishment could lead to a lack of vitamins and minerals behind apparently mental problems.

Magnesium is apparently a help with ADHD and also helps with anxiety. Maybe a lack leads to the ADHD symptoms in the first place. If he by any chance had coeliac or Chrones (?) disease he might also lack magnesium because of that as well as because of poor diet.
Other posters have mentioned food sensitivities or allergies, and some one mentioned endocrinological problems.
There is evidently a great deal to consider apart from, or as well as, any mental or neurological aspects.