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Dietician advice, i think im a bit disgusted....(58 Posts)
The dietician advised that i "...coat everything in sugar or butter, to get a few calories in him..."
DS5 is 2.5y but only weighs 20lbs (for those who've forgotton, thats the average weight of a typical 1y/o) he has always been very slow to put on weight (was referred at 3mths for faultering growth), but is gluten/casein intolerant (as well as eggs, bananas, annatto - havent even tried nuts or shellfish!)
I actually went in to ask for some sort of 'suppliment' to add to his food, he will eat, but doesnt have a huge appetite and easily gives up on food ie. if its hot, too late, etc. Ive managed to persuade him to have milk (soya babymilk) more often than juice, in the hope of more nutrients...
But to coat everything in sugar or butter ... well, where is the 'lets get healthy' regime we are all supposed to undertake???
The thing is he isnt a sweettoothed child, so coating fruit (which he loves) in sugar , well the mind just boggles, i dont want to raise him not to eat unless its coated in an inch of sugar or butter! He also gets extremely tired very easily (had is iron/ferritin checked and its fine), im thinking maybe just not enough calories?
I am going to the docs tomorrow, and id really like to go armed with a good points why he should have the things im going to request on prescription ie. glutenfree bread, flour, babymilk, and some sort of additive powder just to increase the calories?
incidentally he had the blood tests for coeliac disease, which came back as raised levels but apparently not high enough to be considered coeliac - or so the dietician said...
can anyone help with valid points to mention to GP to persuade her what i want will be best to try for him - with regards to the prescription things i want?
yeah, we had that. dd is 25 pounds at 4. I refuse to coat everything in sugar cos of her seizures. We do add butter and cream to everything but its reached the stage where she is now going to get a feeding tube to get more calories into her.
Dunno about the gluten thing, sorry.
ooh riven really? (i know - of course really, i know you wouldnt make it up) but, OMG why on earth would she advise that? are they all a bit crap???
On the gluten front - its a pain cos everything that adds calories is: flour, egg or milk based ie. puddings, custard, cake, biscuits, cream, butter, etc.
thats why i want to ask the doc for powder suppliments/additives, just until hes a bit older/is a bit weightier/better appetite. When i asked the dietician, she claimed that the only suppliments were milk based, which he cant have, she said that the only other option was to tube feed - which must be utter rubbish, there MUST be other children who are dairy intolerant and have suppliments??? surely!
Hows celyn going riven? i know shes had a couple of serious seizures in the last week and wondered how she had done over the weekend?
Sounds like the crap comment my Mum was given re me as a child when I didn't eat much.
Bloody dumb arse dietician. Is this a peadiatric diaetician btw, I'd see if you can see someone else if this person is not a paediatric dietician.
My DS is seeing a paediatric dietician at the moment; we're paying privately to see such a person as the NHS were next to bloody hopeless when it came to my son's issues.
My son was prescribed banana flavoured Paediasure Fibre by his dietician (there is also Paediasure banana flavour) - these are both supplements for young children and has lots of vitamins and minerals in it. These are in a carton and drunk through a straw.
thats sounds like crap. DD was given non-dairy supplements (and she drinks wysoy formula. we get it on prescription)
All my kids were raised daity free too. Apart from dd who needs the butter and cream and is going on the ketogenic diet which is 90% butter and cream.
DD has been fine since her last seizure last wednesday evening. No myoclonics. Although myoclonics are very little and brief, they are actually more serious than having the odd Grand Mal seizure cos all the really horrible intractable epilepsy syndromes that cause mental regression are characterised by myoclonic seizures.
Your dietician sounds hite. DD doesn't have much in the way of wheat/gluten cos she can't chew. So brekkie is millet porridge, followed my banana and cream (you could use soya cream). lunch is veg soup with butter (again, use vegan marg) then mashed advocado. Tea is generally butternut squash or sweet potato with butter.
It is possible to do it dairy free (and as you see, most days dd doesn't have wheat or gluten anyhow) and healthily. Without sugar.
The main reason dd struggles is cos she eats so little. Its hard for her and she chokes often and like any 4 yo gets bored with eating and wants to do something esle.
You really need a better dietician but I've never met one! We have done it ourselves. Advocados are the best thing ever for helping weight gain.
I have just written a long and rather testy reply and deleted it, because I am obviously missing the point in some way. Not an uncommon occurrence ... [blush}
I can't comment on the gluten/coeliac thing.
I don't understand what you are wanting them to prescribe? Afaik, the "high calorie supplements" are just fats and sugars in a tin/bottle. Why will these be more "healthy" than adding sugar and fat to his diet naturally? If you try eg adding olive oil to his standard diet and he refuses to eat it, I think you have a much better chance getting the supplements prescribed, as they are designed for kids with poor appetite. But they won't be "better" than butter and sugar on his regular food, they will just be easier to eat. And I imagine they have down sides.
i think peadiasure is milk based isnt it?
He really needs something that ISNT milk based. but thanks for replying. anyone know one that isnt? please?
If your son can eat, but just a very limited diet, mybe she wants you to beef up his calorie intake based around what he can eat? I would imagine that finding a good supplemental drink that will suit him with so many intolerances might be hard - the ones I know of that are very non-allergenic are more for providing vitamins and minerals than for calories.
It must be very hard, I do sympathise. I have the opposite problem as my DD is on a restricted diet to keep her calories down not up, and it's bloody hard work.
R3 - i dont want him to get a taste for food which is covered in sugar or butter, because as a long term thing.. well i feel that eventually he will be fine, but ATM he needs a little extra, and at this time in his life i would prefer to 'sneak' extra calories in his food rather than to teach him that only food drenched in butter/oils/fat/sugar is the only food worth eating, especially as he isnt actually that bothered presently in foods which are, i just dont want to teach him bad habits at such a young age when hes just learning about food. Hopefully he'll live to a ripe old age with healthier food habits than needing to coat everything.
But I think it is a very valid point to raise if the doctor also mentions it, thankyou.
sidge - limited diet, and he really has a tiny appetite, so like riven says - he gets bored and wont eat much, i rather suspect he has a problem actually being able to digest/metabolise his food... judging on whats in his nappies!!!
But i sumpathise with a child that has to limit intake... that must be really hard too.
nutramigen? I know its sugar free but can't recall if its dairy free.
Give him advocados. What about nuts? Can he eat those? Nut butters on rice cakes are fab.
but for young children fat is not a bad or dangerous thing, and if he only weight 20lbs, then I don't understand your problems with it. The only way to get extra calories in is through food with calories in it.
my dd gets 'forticreme' dietary supplements, from our lovely dietician, who I trust and like a lot. And she always wants to have them before her dinner because they are so delicious and - oh yes - sweet.
She's an easy giver-upper too
I once mentioned to him that we had cake when dd1 got in from school each day, and then went 'oh god, is that okay?' and he laughed and said of course. When I replied "I know people who think they should be snacking purely on fresh fruit and seeds" you know that I was talking about mners, don't you?
nutramigen.. will check it out. Dont even want to go there with nuts Hes intolerant to loads of stuff, and Im intolerant to nuts (as well as peas, DH cant have onions/peppers/mushrooms, Mum is latose intolerant, coeliac, and allergic to loads of stuff) so i just dont want to attempt nuts for now, perhaps im overly protective... i just dont want to risk it.
cappuccino - i dont want to give him lifelong bad habits, when in all likelyhood this is a childhood problem, the problem is that he gets so tired so easily and he has GDD and learning difficulties... no wonder if hes so tired and lethargic from lack of calories. He needs calories at this time in his life, im sure it will help with his learning. Im not looking for a miracle cure - just to help as much as possible.
DS5 cant have cake and biscuits with all the calories, he can only have the gluten free ones - which taste quite crud and are really dry, he doesnt chew either (im sure he could, he just doesnt!) so biscuits are completely useless, he doesnt even try with them.
Did however find some CFGF choccy bars and buttons that he quite likes.
You could try the brand names Maxijul and Calogen. But I'm not sure what the age range is - you'd have to google it. I [i]think[/i] both are low-allergen.
I think the bottom line is that they will prescribe this stuff (it is heinously expensive given your child will be on it for ages) only after they have failed to put on weight with a high-fat "normal" diet - plus it will fill them up so they will eat less "normal" food which could bring issues with digestion, long-term. It's not a free lunch (ha ha ha, but ykwim.)
I get the point re: dietary habits. <nods sagely> In which case I guess you want to blend olive oil into sauces and add cream to desserts and stuff like that rather than spread butter on everything in plain sight.
Many thanks for replies so far, its been a good eye-opener to the sort of questions the GP might raise. Its made me think, thankyou. and AFAIcantell my answers only serve to support my original thought that he should have help via suppliments/additives.
Has anyone on here been through the same thing?
R3 - food for thought (pardon the pun), the thing is, im not particularly after the stuff that might replace food (like the drinks/sips) but more of an additive i suppose it would be. I want him to continue eating as he feels fine to, so it wouldnt interfere with normal eating patterns/habits.
The only one i know of is "duocal" which can be added to drinks and soups and stuff, but i dont even know whats available. if anything at all.
I just had a look in the BNF for you (prescribing formulary) and the criteria are very strict for prescribable supplements - I've cut and pasted:
Standard ACBS indications: short-bowel syndrome, intractable malabsorption, pre-operative preparation of undernourished patients, proven inflammatory bowel disease, following total gastrectomy, bowel fistulas, or disease-related malnutrition.
So if you have a cautious GP you may need to push.
The other problem with additives is if he has a very limited diet then you haven't got as much that you can add it to, IYKWIM.
Thanks sidge. he isnt diagnosed with any of those things. Time to be a pushy mum, perhaps if i agreed to a trial - say a month and if theres no improvement in weight gain, then try something else? He does have a limited diet, but im willing to give it where i can.
Nutramigen is a dairyfree babymilk formula, but the maxijul and calogen I think is more what im aiming for. Polycal and duocal are also the same sort of thing - at least there seems to be a variety of choices out there.
I worked for many years with lots of great dietitians and they said that one of their most difficult jobs was to get parents over the 'idea of healthy eating' for children who need high calorie and high fat diets.
Could you think of it as looking at your dcs needs now rather than worrying what affect diet will have on him in the future?
Won't a lack of calories now have a far more detrimental affect than maybe having to wean him off certain foods later?
I know nothing about gluten or casein intolerance, I'm afraid but if he were to have supplements in the form of a high calorie dessert for instance would that not reduce other things he would eat iyswim.
I wish you lots of luck and hope you find a health professional who you feel can support you and your dc.
Well butter being full of casein i'm a bit
My ds1 and ds4 casein and guten free; ds3 and myself dairy free (casein)
Like riven avocasdo's are big here (all mine have had severe weight issues at various stages), as is olive oil which I hide in most things ds4 eats. I don't skimp on sugar (unrefined) in thigs like stewed fruit but I refuse to add it to fresh- my dh was extremely underweight and is just evening out now and whaddya know- has a far higher cholesterol than me (overweight).
I can't get any bottle into ds4 atm which makes it ahrder- I'd love to give him soya formula now as well as breastmilk (or just ebm if I need a break!) but ds3 absolutely thrived on the baby milk alternatives.
I would never recommend then to a breastfeeding Mum as they're a bit but I did find with formula questions the SMA helpline is handy <<gets hounded off MN>>- as longa s you realise what they're trying to sell!
should you try to get a second opinion on those raised blood levels for coeliac? bit suspect that they are not raised enough, yet he is tired and has funny nappies?
would not worry about coating everything in butter and cream. would worry more if at all about sugar due to teeth and getting sweet tooth etc.
I know dh had tablets to raise his appetite as he simply failed to eat as a child (now 41) and that fixed it for life. wish i know what it was
I just looked up Calogen - it's vegetable oils in water as an emulsion <barf>
I think I'd rather have the cream and butter!
DH2- i havent found a high calorie dessert which doesnt contain 'contraband' foodstuffs, which DS5 is prepared to eat... but i continue my search.
Vegans and vegetarians are allowed to teach their ofspring their idea of a sensible diet, i feel that teaching my son healthy eating habits for life start now. His lack of calories is a temporary thing im sure - by the time he is in his teens it wont be a problem, but the lack of calories is a problem now. He is going to live (hopefully) for very much longer than his teens and for very much longer than he spends as a small child. I am more than willing to let him be a child and let him enjoy all the childrens food he wants, but he cant, so i need to replace it with something. I am not a 'health-freak' and my children enjoy choccy and ice-cream, chips and sausages with the best of them! But DS5 doesnt eat much and cant have loads of stuff, so he needs a little help. I hope that eventually he will be able to tolerate more foodstuffs that he can at the moment, it will be nice when he can choose (with care and education) what he can eat, and if at that point its all junk food... what the hell! at that point it will be his choice.
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