NHS dietitian -anyone had any luck?

[clangermum]

Has anyone had a GP referral to a dietitian (or self-referred as a very old post mentioned you can do).

I'm after advice on the link between diet and behaviour for ds aged 6. His sister has SN, clear diagnoses and medication, whilst ds is under the radar, no diagnoses and no support in school, yet loads of 'ishoos', and knowing the system as I do, having navigated it with dd for years, I can see realistically he's not likely to get any diagnoses. His diet isn't great, despite my best efforts, as he's very fussy and it's a constant battle. He seems very sensitive to additives, so we try to avoid. It would just be good to get some professional advice. We do fish oils.

I also noticed on a very old thread someone mentioned an ASD research place in Sunderland where they would do a urine test to see if a GF/CF diet is needed, even if you don't have an ASD diagnosis. Have googled and will contact them but does anyone have experience of this?

Hi, Not sure about NHS referral syste but I kow if you go to a private nutritional therapist they will be able to do the urine test, amongst other things.

xx

My son was referred to a dietician (ASD/ADHD0 by his NHS specialist paediatrician (involved in Sunderland research).
He was placed on an exclusion diet and gradually foods were reintroduced we saw a huge improvement in his ability to function especially in school.

Dd2 sees a good dietician. She refuses a lot of foods & dietician is good at picking out what is behavioural & techniques for it.she has no official SN also has speech problems & can be v obsessive

Thanks for all the replies, and will check out FeIngold, that looks interesting

We seen an NHS dietician recently. Paed referred DD as her diet was getting more and more restricted (DD has diagnosis of ASD). Basically dietician gave no new advice to us - she did seem knowledgeable about GF/CF and gave us a leaflet! DD has been on this diet for about over a year now but not so strictly recently as we have introduced a little dairy back into her diet.
I think as long as children are growing and not underweight there is not a lot they will offer - only techniques that you probably are already aware of.
However, all said you have nothing to lose if you can get an appointment.

Check out this websie and esp Gut & Psychology Syndrome book by dr Natasha Campbell McBride, it contains excellent dietary advice relevant for many issues related to behaviour/neurology. The diet worked for my ds who was literally written off by some drs we have seen (we did it with no drs backup initially). The reason the book is great is becuase not only tells you what helps but also why, so you end up confident in your own approach.

Have ordered that book through my library, nightcat - it looks fascinating

Seeing an NHS dietician is very much like seeing any NHS professional - you may get lucky , but more often than not ........ In our PCT the referral criteria is so tight, that only 1 of my 3 - all diagnosed with dietary issues of some sort - got through the referral process. Lovely lady - couldn't really add anything to what had already been researched. She did question some of the findings on a few issues and could at least back them up with a scientific reason - but was happy for me to continue as was and to review in 6 months. So not particularly helpful in dealing with the situation.
Just as an aside, my DS with dyspraxia is also CMP, fructose and sucrose intolerant. When he goes slightly off - which is mainly sucrose, as the other 2 are dairy intolerant too - not only are there the physical changes, but i do notice an increase in pinging off the walls etc. Problem is, if it's on offer to everyone else - and looks yummy, is told no he can't - we also get some terrible 'not fair' moods. A bit of a lose /lose.

Sorry for the hijack, Nightcat I was thinking of buying Campbell-McBride's book, but am I right in thinking you can't follow her diet if you are vegetarian? Ds has extremely strong opinions on being veggie and the whole family has always been vegetarians, so I think this would be a huge stumbling block for us with the diet.

Back to the thread. I have just ended ds's course of NHS Dietician appointments, as they were a complete waste of time. She knew less than I did and kept asking me what was the best course of action. She also told me it was fine for him to eat porridge "if its what he likes" when he's supposed to be completely gluten free as requested by his consultant! Not a good experience for us at all.

moosemama.., yes, the book advice is not vegeterian, however, it also justifies why it's not totally healthy to replace meat protein with veg/carb protein.
My ds was self-restricted vegeterian and for years I leaned that way too (I always ate fish but my ds didn't). A few things swayed it for me back to meat (not in a big way, mind you):
-) our teeth are made for eating meat (like most mammals)
-) some nutrients are obtainable easier from eating meat than from veg matter
-) veg cells are made of cellulose that we can't digest/absorb properly (we just don't have enzymes to digest cellulose)
-) if you are vegeterian, you need to supplement some nutrients as some are simply unobtainable from veg food (or our digestive system cannot get at them)
-) proportionately, carbs will form higher % of veg diet and there are not many essential nutrients in carbs
-) some aminoacids are essential and mostly obtainable from animal protein

Anyhow, then my ds was found Zn deficient and B deficient - some of the things that you would need to supplement if you are vegeterian. At that point I gave up going along with him and went back to meat soups/caseroles. I reckon you could just about get away remaining vegeterian as long as you eat eggs and fish maybe, but I came to the conclusion that the more variety the better. When I had realised that we had to supplement B and zinc and aminoacids and whatever maybe else - and I got a big bottle of B liquid, I wasn't quite sure how much to give him and how long this would go on (for life??), I just couldn't immagine feeding him pills for life so in the end we went meat-lite and he now eats small amounts of meat.
The author of the book is particularly fond of soups, meat stock etc as the liquid would contain many aminoacids, I think her overall advice is excellent, she actually answered questions in the book that I hadn't thought of at the time, but struck the chord.
It gets my goat that drs are mostly bothered by iron, when there are lots of other nutrients/aminoacids that are deficient but not even tested for - or if tested not properly interpreted, I had to go on a hunt myself on many occasions to try and work out what it all means and how it fits together.

ds2 was referred to the NHS dietician almost 10 years ago. Crap crap and crap.He has LD and ASD and all she told me was what he should be eating as if it was something I didn't know

yes we had Dr Paul Shattock (very nice man and easy to chat to) in Sunderland, test ds2's wee. it seems to be fairly standard practice round here to do the wee test post diagnosis

also I would suggest googling allergy induced autism there is loads of info on additives out there although we got a book about it all from Sunderland when we did the wee test so they might be the first place to try

Thanks nightcat. We do eat eggs, but not fish. I'm not sure I could persuade him to eat even a little meat and I would really struggle with it myself after being vegetarian for 30 + years.

I have a strong feeling that ds's diet is a real problem and would really like to improve the whole family's diet as well. The NHS has been hopeless and less than no help really, other than to agree that he definitely appears to react to wheat in a very bad way so to keep him gluten free even though his coeliac blood result was negative. He had had a d&v virus and not eaten any gluten for 10 days less than a week before the test, but they can't tell me whether or not that might have skewed the results and the only way to retest is to put him back onto gluten, which makes him so ill, I'm just not willing to put him through it all again. He regularly gets cracks at the corners of his mouth, which I understand is related to B deficiency, he has almost never done a solid stool, going right back to nappies etc etc.

We eat a pretty good diet, lots of fresh fruit and veg etc and until he went gf almost no pre-pack stuff. (Now he has to have the awful gf bread and other gf alternatives which are full of horrible additives and fillers.) That said, I am acutely aware that he/we are missing out a huge food sector from our diets and that can't be good nutritionally so I need to do something about it.

I think I'm going to buy the book and have a long thing about what we can do to improve his diet and what supplements might help.

moosemama, the cracks in corners of mouth could possibly be Zn deficiency (that causes skin lesions too). Zn deficiency can also mean too much copper, which is toxic and can explain some of negative behaviour (like being non-cooperative in my ds case). Zn also improves brain and enzymes function.
There is a paragraph in the book (or maybe a small chapter, can't remember exactly) that talks about why going gf is not enough in many cases (which is why some people think gf doesn't work).
We like you went gf despite inconclusive blood test for celiac (and I opted to go gf rather then have biopsy). After a while on gf substitutes I realised that they in themselves will not improve his diet as they are not that nutritious, so now we don't have any gf bread, mostly do without, although when away or completely stuck I use rice cakes. We just pile up whatever we would have with bread and don't even have any breakfast cereals in the house now.
Even tho drs normally say you can restore nutrients within a few months on gf, after nearly 3 years my ds Zn was still deficient, so I added a supplement, but only occasionally. I also give him occasional omega/fish oil capsule.
The book is the only one that talks about diet and neurology, rather than just good nutrition and the advice is quite natural really, we do about 80% of what's recommended (eg I don't make home yoghurts or bake much).
U could get your ds tested (to avoid too many needles I had his hair sample tested for minerals) and we also do occasional blood/urine tests and I go over each result which is borderline or outside range as much as I can.
We did once use NHS nutritionist, I was asked to supply details of my ds meals, it was only really to confirm that we covered all main food groups.

OP, apologies for hijacking again.

Thanks for all your help nightcat. I am really keen to get a handle on all this, but it seems huge at the moment to get my head around it all and with ds's assessment in January as it is, I'm already in a bit of a flap.

We had the same with the NHS dietician, she just said she was very impressed and what an exceptional diet he had. So basically, no help at all.

Ds is being a bit awkward about his diet at the moment. At just coming up for 9 years old, he is already starting to realise how different he is from his peer group and is really resistant to anything that makes him stand out even more. He's already being really stroppy about not having the same bread as everyone else, so stopping him having the gf brand he likes would be a real problem at the moment. I think its going to be a slow, softly, softly approach if we are going to get anywhere with him. I'm quite interested in making home made yoghurt and I already do a lot of baking, so it sounds like we might be able to somethings to improve his diet. (Not so keen on the idea of fermenting my own saurkraut (sp?) though!)

I was mulling it over last night and I don't think we'll ever manage to get him to eat fish, but we might eventually be able to find a way of incorporating fish oil - possibly. He always used to have the flax/hemp omega 3 oil on his breakfast and he loved that, despite it tasting absolutely foul.

Sorry for all the questions, but where/how do you get your ds tested for mineral deficiencies?

Moose I am looking into nutri-link - has anyone got any experience of their mineral testing kits?

This thread is so useful! Hijack away - it's all interesting

Moose, you don't need to ferment your own sauerkraut (even tho it's easy to do), you can just buy it in jars but make sure that all it contains in cabbage and salt (ie no vinegar or white wine), you can also buy cucumbers in brine (again, don't go for ones with vinegar), big Tescos do them in the ethnic section.
I did my ds hair at Foresight lab in Sussex (by post), I know Biolab in London also do them, but no experience of Nutri-link.
As for the gf substitutes, we did use them early on and I think they are OK as an interim measure (to wean off gluten mainly), but as they were as you say, like cardboard, we eventually stopped in favour of cooked breakfast and other foods, although I occsionally get biscuits or similar as a treat. And I am trying to make an effort with baking (sweet variety not bread).
I also cook mostly from scratch now and even tho it's no let out, I still think it's worth the effort.