Dietician advice, i think im a bit disgusted....

[misscutandstick]

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?

Just looked at your profile- yu have even more sons than me - I do love having 4 boys.

I may be completely wrong here but do I remember the gf/ccf being asd relate for you? ds1 and ds3 (and ds4 and me) are all casein intol anyway but thats why we have the GF bit too

misscut, I think your perspective is a little skewed, I'm afraid. Your son is malnourished* - he needs extra calories. Sugar and fat will provide those extra calories.

I don't understand why you are keen to find a supplement to give him extra calories rather than actual food?

Sure, a healthy diet is important, but a healthy diet for your average adult is NOT healthy for a small child and definitely not for a malnourished child.

*Am aware using the word 'malnourished' could sound as if it's some sort of judgement on you - it really, really isn't but you need to be clear about what the problem is here. And it isn't obesity or high cholesterol or anything that would require a low fat diet.

Peachy - yes, DS5 is showing more and more signs of classic autism. At first i thought ASD of some description, but now Im convinced its just plain ole autism. The SALT has given in and adjusted to that thought too... i got a letter the other day asking if i would like to attend some group or other for parents of children with autism, after many wks of her denying it altogether and claiming that his symptoms were "similar to those of autism, but lots of things look like it..." aye, autism looks an awful lot like autism . Portage and both HV were on board from the start which was very helpful... just the Paed now...

My mum only found out she was coeliac after seeing DS5's symptoms and then having tests done at the docs . But shes always known that shes lactose intolerant. she always assumed she had IBS. SHes practically allergic to living, intolerant to oodles of stuff. so its her fault then !!!

Edam - i dont want to alter his diet at all, for a slim picky eater on a restricted diet, i think he does reasonably well... he just doesnt (to my thinking and to all symptoms) get enough calories, and id like to fix that tiny prob. I dont want to rot his teeth by coating everything in sugar.

Some suggestions, picking up on rivens suggestion about avocado, I have read a recipe for chocolate muffins made with avocado somewhere on the net(sorry don't know how to do links, but it was on a blog by a girl called Ysolda who avoids dairy). What about giving him sweet drinks using a straw to limit contact with teeth. Have you looked at supplements for cyclists and runners? DH uses them on long cycle runs, they are concentrated carbohydrate gels in a tube (like a frube) or in the form of jelly beans. Unfortunately they are expensive and DH generally prefers bananas but might be worth trying for emergency energy boosts, My DS's are awful when their blood sugar drops too low (ie. if tea is late 'cos I have spent too long on Mumsnet!)

Found chocolate avocado muffin recipe on vegweb.com. It has lots of good things in it and no eggs or dairy but is not gluten free I'm afraid!

can you go to a naturopath/homeopath. They might be able to help with all these intolerances. Its not 'normal' to be unable to tolerate so many foods and you seriously don't want to end up with a feeding tube with the risk of infection and scar tissue building up.
I wouldn't worry about fats. If he doesn't get enough calories he will be lethargic, his brain wont grow and he'll develop learning disabilities. The docs will then insist on a tube an=d you wont get any choice.

When he eats dairy what exatly happens? Anaphylactic shock? If its an intolerance then the homeopath can really help. ds2 was cured of a dairy intolerance.

Totally agree Riven, he really doesnt need a tube at all, just a few extra calories.

I do indeed worry about his learning - he has GDD already, wether thats thru autism or lack of calories (or both) I dont know. But i do know how tired he gets and how that affects his mental capacity. Currently he has the same sort of ability of a 12mth old. but is still non-verbal.

When he eats 'hidden' dairy he gets A) extremely lethargic, 'spacey', bad tempered, violent self harm and alternating constipation/diarrhea. So its not as immediate as anaphalactic, but still as detrimental to his health/learning I believe, OR when consuming large amounts B) violent vomiting and violent stomach cramps, alternating constipation/diarrhea. I totally go with the 'leaky gut' theory, i can see the effects.

He didnt tolerate milk as a tiny one - he cried and threw up a lot and had violent diarrhea. The doc at the time said "theres nothing wrong, all babies do that"... ive had 4 others, no they dont. But he didnt suggest any alternatives or send me to someone who new what they were talking about. He simply suggested that i try another brand . At that point in my life I had PND but didnt know, and had so much on my plate that i couldnt think straight - so just accepted what he said Im actually really about that incident....

ally - will check it out, thanks!

ally - know what you mean about blood sugars, DS5 has toast (glutenfree) and (now) milk (soya babymilk) before he goes to bed (about 7pm), but when he wakes at about 7am - hes that low that hes shaking and white, and can barely manage to get food in his mouth, surely thats not right either?

just another thought to add: mums diabetic too (hmm theres a shocker!) so she had one of those gadgets for checking blood. Done proper 24hr blood sugar tests, and that seems to be fine (although hes very low in the mornings) so its not a diabetic thing either. Oh and its not a thyroid problem either - had that checked. if anyone can think of another reason for lack of energy and other symptoms listed, id be very willing to listen

has not 'HAD one of those gadgets'.

leaky gut sounds probable which is why I suggested homeopath/naturopath. They really are fab if somewhat spendy.

can a homepath 'fix' the intolerance??? how??? i dont really get how that works, but TBH im not really sure how 'intolerance' works. I cant tolerate nuts, i just know that its excrutiating pain followed by a revolting conclusion (TMI!)!

I've no idea how it works but it really helped ds2. Its not a sign of a normal healthy body to have so many intolerances. But I think a naturopath might be better cos they usually know about leaky gut and how this affects health and behaviour.
I just know both boys can now tolerate dairy having been covered head to toe in excema and having had severe behaviour issues (ds1 is aspergers and ds2 didn't speak until gone 3 when I thn took him to a homeopath. He started speaking 2 hours after the remedy.)

but how do i find a good one?

ANother thought but

If he's asd this might be looking from the wrong ange

Edam's point is pretty good imo with NT kids but if he's no then changing the food he eats might actually stop him eating virtually anyting at all! ASD kids can be very much like that- you have to work with what they will accept, and supplements may well be the best solution.

Have you thought about talking to the NAS? bet they've come across this before

I completely agree with edam

if he is not getting enough calories the only option, other than supplements, is to change his diet

supplements themselves change their diet

as I said, my dd1 has supplements in dessert form. She used to have yogurt and fruit as a pudding. Now she has a big pot of calories

there really isn't much difference in giving her that and giving her a stodgy pudding every day, to my mind. I have no idea what is in the supplements. They may be made of alien slime and crushed slugs for all I know.

peachy's right, I don't know much about ASD. But it sounds as if he needs extra calories urgently so if coating everything in sugar does that, and he will eat sugar, sounds like a good short-term measure while you sort out the longer term stuff.

my ds is 4.5 and weighs 22lbs, he has quad dystonic CP and his weight has always been an issue and we are waiting for a date for his PEG and Fundo at the moment.

we have tried just about every drink supplement going, first was pediasure plus, which is milk based and no use for him, then the juice based ones, fortijuice, enlive plus, provide extra etc, these wouldnt give your child a sweet tooth as they taste pretty bad but if they were suitable they have around 200-300 calories a carton.
in the additive department we tried calogen which was quite high in the old calories but upset his stomach, when he was sick it was an oil slick!
We now use maxijul and duocal, the duocal is a tasteless powder which is fat based and mixes in really easily with anything a bit moist, although you need about 10 spoonfuls for 225 calories. the maxijul is a bit higher in calories and comes in powdered form and liquid form, we use the liquid one in natural flavour although it also comes in orange and lemonlime etc, the natural one is easier to mix in with stuff as it just tastes sweet rather than flavoured, think it would be hard to drink out of the carton with the straw as it is quite syrupy so over 24 hours i put a wee bit each time into watery juices, puddings etc so its not too sweet all at once. a 200ml carton has around 500 calories so it has really helped us!

We've tried every diet in the book for my son's epilepsy - gfcf, Ketogenic, specific carbohydrate. Just remember boosting calories isn't the only issue... empty calories such as sugar cause fluctuations in blood sugar level which are not helpful to anyone. You need slower-burning, low GI foods and healthy fats help with that balance. Butter in moderation is fine, as long as casein isn't a problem of course!

We found coconut oil very useful as a healthy and easily-digested fat. Gregor loved the coconut oil/ground almond/honey muffins he used to get on the SCD.

megan - totally agree, between tooth rotting and blood sugars doing loop-the-loops, i really feel that coating his food in sugar is not a good idea. Coconut is a novel idea - but im a bit nervous as Im intolerant to those (and nuts too) and wonder if he might be, are they related (nuts and coconuts?)

Glittery - many many thanks that is extremely useful info, thankyou for posting. Its great to have an idea of whats available, what it could do for DS5, and an honest opinion of its effectiveness - rather than doctorspeak or pushy advise from the manufacturers.

Cappuchino - unfortunately the 'forti~' range is milk based and DS5 is dairy intolerant. So he couldnt have the 'forti-puddings' even if we all wanted him to.

The main problem is that all the main ways of adding calories, are unsuitable for DS5 ie. no (average) flour as gluten intolerant, no milk as dairy intolerant, no eggs as he cant have them either.

PEACHY - havent thought of the NAS, i dont know why, think i feel that DS5 'isnt bad enough' to warrant it . The docs appt is at 5pm, could have sworn it was this AM but rang and confirmed its later..

megan - SCD?

misscutanstick-was your DS5 already on a GF diet when he had the coeliac teat? If so, that would have made the test useless anyway. The only way to know for sure if he has coeliac disease is to have an endoscopy, but again he would need to be eating foods containing gluten for some weeks before the test. Would it not be better to get a diagnosis before cutting out food groups?

TIGGI - no he wasnt at the time, it was done as part of routine blood tests right at the start of going back again with the developmental delay. so at that time he was still having pasta and toast.

We cut out dairy some wks later at the advice of the dietician (OK dont jump on me here, i know you are going to ask why take this advice and diss other advice???) as DS5 had always had problems with his milk, starting with babymilk, changing to low lactose babymilk, thru to goats milk, and still being quite sick. so now hes on soya with all milk product foodstuffs also removed. Actually the difference in him is amazing! thats a whole other thread, so wont go into it here. When we went back 6 wks later, i said hes still not right, really stinky nappies, still tired, and i was convinced there was still something else. She had a look at blood results and mentioned that the tests for the 'wheat intolerance' were quite high, considering the Paed said that it wasnt coeliac. so we cut out all gluten too.

It was an horrendous almost 2wks, violent self harm (headbanging, face scratching, slapping nipping), 'siren'ing (its a peculiar noise he makes at 90Db) all day everyday, and not an ounce of energy... i took this as a sign that he really doesnt need gluten in his body. And there really is not a snowball in hells chance that im going to start giving it to him to prove a test.