dairy and behaviour

[KnittingisbetterthanTherapy]

Hi, asking this on behalf of a friend and wondering if anyone could point me in the direction of some advice.

Her DS is 3.3yrs and exhibiting some challenging behaviour (is in pre-school 4 mornings a week and has an adult with him all the time) and has delayed speech.

He is 'in the system' already, with referrals to speech therapy and paediatrician, but she had heard that there may be a link between excluding dairy produce from diet and improved behaviour.

Does anyone know of this/heard of it/tried it?

TIA

hi Knitt

I don't have any info myself. If your friend feels there may be a link in her sons case I would encourage her to mention this at the next Paed. appointment and see what they say. Does he have any other known food intolerances?

HIH

Thanks headinhands. I don't think he's ever been tested for food intolerances, but apparently her mum heard something on the radio about a link between behaviour and dairy!

It could all be nonsense, but I think she's pretty keen to try anything at the moment - but, not keen to go down this route if it's a waste of time IYSWIM.

I suspect she is talking about the gfcf diet which can make a huge difference to children with ASD and linked conditions. Gluten and casein ( wheat and milk) can have an effect quite often. But you can't test easily and you can't really be sure until you try excluding.

A good place to start is the autism research unit under Prof Paul Shattock atthe university of sunderland. You can send a urine sample and they will let you know if the child has markers suggesting gluten or dairy may be a problem.

Also good is the AiA which I think is now called Respectum. Just google gfcf and you will find references.

You can mnnetion it to a paed if you want but tbh I have only ever had responses ranging from disinterest to antagonistic stupidity from the medical establishment. But i gather things are better in the years since DS2 started gfcf .

It has been life changing for DS2 who would probably be in full time care if we hadn't pulled foods

"but I think she's pretty keen to try anything at the moment - but, not keen to go down this route if it's a waste of time IYSWIM."

Totaly, that's why it would probably be best if she discussed it with the Doc before thinking of making any changes. I'm sure there's someone else here with more experience of these things. Did you post in Behaviour/Dev. too?

HIH

It isn't a waste of time and it isn't nonsense. But it only helps a group of children , not all kids with ASD/ADHD/ speech issues etc

Others on here are doing it. Hopefully you will get more responses

Thank you pagwatch, that is v helpful. I did wonder how his paediatrician would respond as often mainstream medical professionals are v sceptical about this stuff.

I will google and send her some links.

He has no diagnosis at present, but there are clearly issues. She is just at the stage of scaring herself by googling things .

Thanks both, x-posted. Haven't posted in behaviour cos thought there would be more people posting with specific experience in SN.

Thank you.

aww Knitting

"She is just at the stage of scaring herself by googling things ."

Yes. I remember. It is a hard time and whichever way it goes, better or worse, it is seldom the scenario you are imagining.

DS2 started gfcf when I was at that stage. I only connected with it by accident as DS2 had regressed at 18 months or so and I had noticed that his food choices changed and his bowel problems started. So I was looking at food, intolerances and that led to me reading about the connection with behaviour.

Perhaps that is why I never had much doubt about it. It does seem an unlikely connection when you first read about it. But with DS2 the difference in his behaviour, and especially how happy and calm he is, is immense.

But you have to try it scrupulously for a good few weeks. And it really won't help every child.

You are being a good friend helping her through this time. I did it on my own and it is hard

Thank you pagwatch. I have to tread very carefully as I'm a SENCo so probably have more awareness of SN than a lot of parents (except those that have SN children themselves of course). I'm very conscious of not 'diagnosing' other people's children, esp at such a young age, but she has raised her concerns with me so I'm just trying to do what I can.

I'm not sure he has any bowel issues - would that be relevant?

It is such a stressful time for all concerned .

Did/does your DS find the restrictive diet hard to stick to?

my dd1 is also gf/cf

we put her on the diet when she was coming up to 3. she is 6 now, and has improved and changed so much.

I too have met nothing but scepticism form medical professionals, and even direct hostility to the diet (dd2's notes have "mother insists on keeping dd2 on a low fat diet" written in them, because I refused to give her cow's milk products when she was an infant )

the AiA/Respetrum site is very informative, as is the Sunderland autism research Unit (now called something else, i believe, but you can find it by googling)

we did the Sunderland test with dd1, and she scored off the scale for gluten intolerance. not so much for dairy, but dh has a dairy intolerance anyway, so we pulled dairy for that reason. the differences have been huge for dd1.

she didn't have that much wrong with her bowels (or so it appeared) as a toddler - a little loose, stools-wise, but not too major. but this continued on as she got older, and it just wasn't right, iyswim?

anyway, that is all much improved now too.

agree with pagwatch - you have to stick to it scrupulously, and it is tricky in the beginning.

but one you get your head around the fact that, other than "real" food (ie non-processed) you won't be able to find stuff in the shops easily, then it gets better. dd1 can't have a lot of the replacement gf/cf foods because they are full of other stuff she can't have (sweetners/flavourings/MSG, even things like apples/apple juice - but this knowledge was built up over years)

knitting, DS2 doesn't mind too much now as he associates the wrong foods with being uncomfortable/in pain. He often checks with me or simply refuses foods that may be a problem.

It is a pain in the arse when you are going out as the world is made of refined carb... He is the only child in his class who gets at the idea of MacDonalds.
But you just get used to packed lunches and snacks in his bag.

His bowel problems were not imediately obvious initially - it was the food choices really. But we did start to notice bloating, wind etc. And he became increasingly pale and had dark circles under his eyes. These gradually improved too

That's really helpful pagwatch. Thank you. They have another observation booked this Friday and then waiting on paed referral.

Oh, and I'm with your DS on at McDonalds!

certainly not a wate of time but not sure how much suppport you would get from a doctor...

also look at www.treatingautism.co.uk - lots of info on diet.

Nb gluten was more important and beneficial to cut out for us than dairy.

I?m another one who has had a very positive experience with removing dairy from my child?s diet.

My DD(5) has ASD and we saw many positive changes through dairy-free, including behavioural.

We started it before she was diagnosed. I asked for advice from GPs, paediatricians, blah, blah, blah and all were useless. Worse than useless actually, as rather than being honest and saying ?That?s not something in my field of expertise? they looked at me strangely and said ?It doesn?t work. There?s nothing in it.?

So I read up about it all myself and learnt that casein (the dairy protein you want to avoid which is in every blardy thing) only takes a maximum of 14 days to leave the body. So I could do a trial and only commit to a fortnight. That made it seem totally worthwhile and do-able to me. If, after a couple of weeks we didn?t see a difference, we?d go back to how we were.

We saw the beginnings of many good things within that fortnight (and that spurred us to go gluten and soy-free as well). That was over 18 months ago. I am so pleased that I took the leap (and it is a leap because you don?t have any professional support) and trialled it.

I think there?s potentially a lot to gain and not a lot to lose (other than the faff of adjusting your child?s diet) through a trial of dairy-free for 14 days.

There?s tons of stuff on YouTube too. I watched a fair bit of Phil Commander (a dad of a child with autism who tried diet, amongst other things) cos he was very, very, straightforward in his explanations. (He?s not my DH. Honest.)

Thank you so much for your responses, sharing your experiences and the links attached. All very useful - esp that results could be seen in a such a short time.

I will pass all this on. Thank you.