Here some suggested organisations that offer expert advice on SN.

A non-woo dietary practitioner or book suggestion?

(34 Posts)
MareeyaDolores Mon 29-Apr-13 21:13:33

Posting for a (non-MNSN) school-gate friend who is convinced her dc has some link between severe dyslexia/ sensory processing difficulties and diet. Has quite a sensitive stomach but no obvious foods are connected.

She has tried already with a few Holland-and-Barrett supplements, and organic home-cooked food etc. The DC went GFCF briefly, but rebelled.

Is on benefits, so can't afford TH etc, but could save up for a one-off appointment with someone good. I think the GP would probably refer on the NHS eg dietician or gastroenterology, so I'm wary of sending her too far into the whole alternative-therapies thing in case it labels her as fad-diet-nutty-mum and closes down that route forever. On the other hand, is there anyone NHS who believes in dietary interventions anyway?

Kakty3 Thu 30-May-13 22:38:09

Excellent, thank you very much, MareeeyaDoloures! Also, thanks for linking 'Dietary Management in ASD' paper in the neighbouring thread, which is going into my 'research-to-read' pile (can you tell our dx is recent? :]).

I can see that several of the doctors listed over at AllergyMummy work at GOSH. In fact, we will also be asking to be referred to GOSH's National Centre for HFA tomorrow, as since getting the referral to the multi-disciplinary team (the appointment is still unconfirmed, but we've been told at least five months!!), we have obtained a private PDD-NOS dx (via child psychiatrist) and want to have it re-confirmed through NHS for obvious reasons.

Thx again!

MareeeyaDoloures Thu 30-May-13 22:09:07

GP might know someone even better though.

MareeeyaDoloures Thu 30-May-13 22:08:37
Kakty3 Thu 30-May-13 21:19:07

Sorry for resurrecting the thread. Other than Dr Goyal at Sincere Health (who has a long waiting list, it seems) can anyone recommend any other good London-based doctor that deals with ASD and Biomed, please?

Our DS is on a very limited diet (guess what, pretty much gluten and casein!) and we are concerned that he is not getting sufficient micronutrients and minerals and want to investigate. Have a GP appointment tomorrow, so ideally want a name that he could refer us to via private health insurance.

TIA!

dev9aug Fri 03-May-13 15:53:20

Thanks nourishing and iautism

iAutism Thu 02-May-13 23:39:43

GFCF mixed results as you only taking out one or two things but its heading in the right direction.

Gaps Diet (SCD but harder) is not easy but also not impossible. We coming up to nearly 4 years and the results have been very good.

Yes you right 6 months for gluten to leave the system and 1 month for casein.

Gaps recommend you need about 3 months to prepare.....we jumped in after a few weeks of GFCF....no intro diet. I would check out baden's Intro guide. She also run a great yahoo support group. Probiotics we only use one and its best to start with small amounts and build it up. Also beware of die-off periods where things get worse for a while but it does then get back on track.

With diet its a long road as there is no quick fix. Also more about lifestyle changes for the whole family. Always easier to do it when the child is young as they don’t know much about processed foods smile

Rgs

MareeyaDolores Thu 02-May-13 20:54:55

Not side-tracked... all potentially relevant grin

I do think the mainstream approach to autism has changed dramatically in the last 10 years!

Sorry, Mareeya, got a bit side tracked. blush

Yes, Saintly, felt really lucky with our paed. She's fab. Still DS's paed as she's also the epilepsy specialist and DS has had a couple of funny turns.

Yes same age. Your paed was good. We were laughed at in 2002 by our then paed (current paed is fab).

MareeyaDolores Thu 02-May-13 16:56:15

Ooh, thank you everyone

My DS2's paed was supportive when I mentioned GFCF and gave me the Sunderland contact details, 10 years ago, but I think she was pretty exceptional at the time. My DS2 is 13 now, similar age to your DS1, saintly?

ds1's neurologist suggested GFCF diet, (ten years after we'd started grin ) so it's definitely pretty mainstream these days.

We tried GFCF more for the behavioural improvement, his gut seemed fine anyway. The urine test was looking for evidence of peptides from gluten and casein that, the theory goes, were converted to opium-like chemicals that crossed the blood-brain barrier, causing some of the behavioural problems. As it happens, DS2 showed no change in behaviour after 7 months so I abandoned the diet. I am still glad we tried it, though.

We did have a lot of extensive stool testing prior to starting the diet. Absolutely nothing abnormal found....

Withdrawal?

I must say I think DS's behaviour has actually deteriorated during the time he has been on this diet (I dont blame the diet for that, he has also had some greater demands placed on him on his programme, but just saying that I cannot see ant improvement in any parameters!)

NourishingButtons Wed 01-May-13 22:11:29

dev - you start with the intro diet, then once symptoms have gone add in dairy one item at a time starting with ghee (clarified butter), moving through yoghurt etc, so you can, if tolerated have dairy on GAPS

We are currently doing GFCF which is a lot easier as you can have potatoes, rice, non gluten oats but no dairy, swings n roundabout i spose, not had as much effect as yet but earlyish days.

It depends on what the gut is dealing with - leaky gut, yeast overgrowth, parasites etc. The only real way to know is to have a nutritionist arrange a stool test, we're having the metametrix one which shows markers for everything gut related

www.espa-research.org.uk/

This is them. They used to be part of Sunderland University but separated off a few years ago.

Wow, dudesmummy! I tried GFCF via the Sunderland lot, doing a urine test first to see if they thought it was worthwhile. It was them who told me 6 months to clear gluten from the system, but runny poo type problems may clear much quicker, more of a wheat intolerance thing, maybe? Casein clears in less than a month, they said. This was to see an improvement in concentration and behaviour. I'll google Sunderland lot for you. smile

The gastro I saw told me that you can tell within 2 weeks whether there is going to be any point in sticking to the diet! There is a lot of conflicting info out there!

bassingtonffrench Wed 01-May-13 10:12:24

optimum nutrition for your childs mind by patrick holford is quite mainstream and realistic

Badvoc Tue 30-Apr-13 16:55:21

We do TH and the diet side if it is really not too hard at all tbh.
The supplements will help too.
Vegepa (get mine from amazon) and mag and zinc.
The diet is really not a diet but more a healthy eating programme...kids should have treats and I think it's important not to be too prescriptive as - as the op found out - they rebel.
Basically you need to cut down on sugar, additives and junk.
Much more protein and cut down on carbs.
So for example, ds might have beans on toast for bfast, tomato soup and rolls for lunch and then roast potatoes, veg and chicken or fish for dinner.
Snacks would be homemade flapjacks, rice cakes etc. not sweets or chocolate.
We have also cut out milk as a drink and it's really helped him.
I also use GF pasta as we can't tell the difference.
He still eats ice cream as a treat and a very occasional McDonald's.
It's worth checking out "the brain food plan" by robin pauc which details the diet and has recipes in.
HTH x

dev9aug Tue 30-Apr-13 15:53:30

I know nourishing which is why we haven't done it yet. It is something I have been meaning to, but its just too scary. At the moment ds1 is having some stupid amounts of probiotics supplements you name it, but with no sign of his gut improving so we definitely need to give this a go.

Since you mention it, when you did GAPS, did you also go gluten free/dairy free because according to the book, you can have some stuff which has dairy in it or am I just reading it wrong.

NourishingButtons Tue 30-Apr-13 15:48:11

dev9aug GAPS is a serious pain in the ar5e, we did it for my son for 6 months as he had various symptoms - dark circles, mushy poo, bags under eyes, neuro sensory meltdown stuff. It was very hard, you have to change your whole kitchen, but it definitely did some good work. Eye bags and circles and poo improved. Neuro stuff did go away a bit on diet but since we stopped it that stuff came back. Have a feeling we need to do it again for longer sad

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