Autistic children please have a look at dr andrerw wakefields research

[haze36]

My son has autism and i fully support dr wakefields findings about autism especially if your autistic child has bowel problems like my son it's a real eye opener to say the least.I am not saying mums of autistic children need to agree with his findings but boy is the evidence stacked up.You can eith google dr wakefield to get the info or head to his facebook page dr andrew wakefields work must go on.So you would type in facebook dr wakefield's work must go on.you will be gob smacked when you read his findings.

hi Saintly
My paediatrician agreed that I should hold off from giving DS the MMR booster.
My DS regressed following a serious illness abroad aged 18 months just after MMR.

Where has the OP disappeared to!!!

I have found quite a few medical personnel to be quietly supportive. Still always surprises me though!

Waitingfor I have posed on the other thread the same thing, I wonder if this was her intention, to cause us to argue amongst ourselves as to the pros and cons of this paper.

I posted this on the other thread but thing it should be here as well.

I wrote that wrong I know it I not blame people look for, and I am sorry for using that expression.
Something I have noticed though, haze36 has created thee 2 treads, got us all irate with each other, not to be heard from again.
We all have our own ideas as to where our children's autistic traits come from and there is no one set answer for all of us.
When I say environmental factors, I meant anything outside of genetics, including vaccines.
I am not going to post again on this thread as I feel it is just getting everyone's back up and I don't want that to happen. We have enough fights to deal with in our everyday lives that we should not have that here, just wondering if the op knew this would happen though!

very true.
We are usually a happy supportive collective however it seems OP is trying to create animosity.
I may be wrong but weird that she has not returned to defend herself.
Not worth the hassle. I think we should stop posting on both threads as a protest!!!

pag, the fact that I'm unconvinced as to the links between mmr and autism does not mean in any way that I disapprove of taking and investigating that thesis further, or that others might be more convinced than me.
I haven't posted on this thread precisely because I think that the SN boards shouldn't end up in a divisive tangle of differing opinions and accusations of naivety. They are far too important and I'd hate to see any sort of bad-tempered splits over different theories.
I am happy to agree to differ, with respect.

it cannot be overlooked that there is a high incidence of asd children with bowel problems. i have tried dairy and gluten free diets with a view to not only settling my sons unpredictable boewl movements but looking for function improvement too.although the diets helped his toileting there waas no change in function, however i have recently tried a high strength pro-boiotic recommended by my sons dietician and saw a definate speech and communication improvement in under 24 hours. he also became very emotional when taken daily but taken weekly the speech continues to improve without the emotional side effect. i strongly believe there is a connection between the digestive system and autistic spectrum disorder. although i am not saying there is a cure i think it is worth parents trying different diets and supplements with asd children as it is non invasive and will do no harm if it does no good.

clokey
is it an NHS dietician you see?

Clokey we found similar. When my son was little he couldn't tolerate gluten at all. His bowels were all over the place etc etc. He also weirdly couldn't tolerate peanuts. On those he was headbanding concrete repeatedly. I took photos of the bruises as I was so worried. At the time he only ate about 5 items of food so finding the culprit was easy - after removing the headbanging went within 48 hours.

We used probiotics and saccromyces & now he can have gluten. Haven't tried peanuts.

Before the virus that caused his regression he had shed loads of antibs (during the virus as well) which may explain why he responded so well to probiotics.

Dr Derek McFabe who runs a research institute in Canada is a real expert on gut bacteria and autism. If you google him you'll find some interesting video presentations (free to view). Well worth watching if your child has gut problems.

Goblin

I wasn't trying to suggest that . I am sorry I phrased mt response to give that impression.

I don't mind what people believe either. There are lots of people who I totally respect who hold different views to me.

I just have an issue when so often people seek to define what I believe, as seeking to blame someone.
I think it is presumptious and wrong for someone to make such sweeping statements about what motivates parents like me.

It annoys me not just because it is unreasonable but is often an attempt to dismiss us (usually women) as irrational and over emotional

But I stress - I don't have an issue with people holding different views about MMR/wakefield etc.

happy to agree to differ.

Interested in the probiotics-know nothing about it though.
Any links please?

waitingforgodot - what bits of diet/biomed are you interested in?

dietician unlikely to be found on the nhs that supports biomed. dd1's (and dd2's for that matter) dismissed it all as nonsense, and refused to believe that dd1 had improved so much (non-verbal before gluten free, had no pain reaction - started talking within a month of going gluten free, within 2 weeks had a normal pain reaction)

have you looked into gluten/casein free?

dd1 not on any supplement regime at the moment (mixture of apathy on my part, and tryign to pin down a mystery reaction) but hhappy to try to answer.

We use (when we are supplementing) a nutritionist form here he has taken a slow, steady approach so far, and we have not spent loads on testing etc.

silverfrog
I have had DS on GF for over a year with limited casein.
It has made a great difference in reducing stims and behaviour overall is a lot calmer.
I have not supplemented though (briefly flirted with fish oils but he didnt like them). So keen to find out more and any advice would be great!

hmm, it's a couple of years now since dd1 was tested, and probably a year or so since we took a break form supplementing, but here goes.

we did a couple of tests with dd1 - a urine analysis, and a saliva analysis, iirc.

found soem interesting results. she was totally deficient in vitamin B - no stores at all.

also trace minerals were out of whack.

form memory, we had her on:

a good multivit
vitamin E
evening primrose oil
fish oils
vit B complex
folic acid
and gut probiotics.

we found a lot of improvments - general things, less anxiety, less stims, better absorption of food. also a few bonuses too - more willing to try foods being one.

keep meaning to re-start her, actually, especially the fish oils (and other omegas)

some people have done it by reading up themselves, I prefer to have someone on board leading the whole thing - so we used nutrilink as linked before. very knowledgable, very helpful.

I want to research enzymes more now, and maybe trial dd1 on those (dh - dairy intolerant - uses enzymes successfully if going to a wedding or similar where he doesn't want to make a fuss, and they work well for him)

thats really interesting-thanks for that. Off to look at your link.

We used nutrilink for a while as well. Also had the saliva tests. I can't remember which prob we used but saccromyces (a non colonising yeast of all things) made a big difference.

We now give a mulivitamin. I chose one from
mandi mart that has vitamin A as whenever ds1 is on vitamin A all the weird side of eyes visual stunning that he does disappears. Some children with autism are meant to have a problem processing vitamin A and vitamin A is needed in the retina (by the cones iirc) so I presume it may help. We have never done megadoses although I have been tempted (would want to test levels first I think and would probably get a nutritionist again first of all).

I'd really recommend mandi mart for supplement shopping. Sorry am on iPod so can't link right now.

Incidentally ds3 is very biomedically like ds1. He also has high iag in urine and had a casein peak. His development at 15 months was a little worrying. We had been cautious (no gluten etc) but we switched him
to goats milk as well and he's fine now (aged 5).

Treating autism are your people as well.

where did you get tests done?

the nutritionist ordered them through to us to be done at home (what fun! had all sorts of food exclusions for 3 days beforehand, then had to get dd1 to chew a cotton wad (like they used ot use at the dentist) for 45 seconds precisely - and then retrieve it , bung it in a test tube and send off to the lab)

the urine sample was positively easy following that, despite the fact that dd1 had stopped drinking in protest at us removing her juice (she only drank pear/pineapple at the time, and pineapple was one of the food exclusions, iirc), so we had to spend a couple of hours syringing water into her with a 5ml syringe, to get her to wee

oh happy days!

Urine test at Sunderland autism research unit. Saliva and further urine tests via nutrilink. Recently we saw an NHS neurologist and he has ordered some biomed type tests (via blood tests). Just waiting for results.

thanks for that. Sounds like fun!

'But I stress - I don't have an issue with people holding different views about MMR/wakefield etc.

happy to agree to differ.'

Oh Good.
There are people I enjoy pissing off on mumsnet.
You are not one of them.

Didn't mean to sound stroppy or put anyone off. I had a lot of hope that we would get some definite results from all that testing and I think we spent a year chasing the 'why' and got ourselves broke, busted and disgusted.

I'm just venting because I was unrealistically hoping for a clear-cut answer and an instant cure from the whole thing (having been motivated by J McCarthy et al in the early days that this was the only way to go).

Of course it's useful to know in order to help other kids. I applaud everyone that has the time and energy to move research forward and help campaign for awareness but sadly, I am not one of them and cannot find the motivation to be .

It's just that I am usually at my wits end with a fulltime job 35 miles from home, two toddlers, guilt-tripping because I work when I 'should' be at home,then guilt-tripping that I dare to think of quitting work when I have to pay up all this debt I racked up trying to fund an ABA program last year, not quite keeping on top of potty training, not getting any words out of ds1 while ds2 is often neglected, trying to appear composed at work when all hell and politics are breaking loose with TUPE and the academies' agenda, the stress of ds1 being on holiday with nothing to do but regress etc

finefat

I know what you mean. It is easy to go through all thethings you feel you should be doing. But none of us can do that.
Again. I don't think we all have the same experiences , nor should we have to keep quite about our negative experiences.

Its only the 'looking for someone to blame' thing that I personally have an issue with.

I am sad that you invested so heavily inthis and got little out of it.
FWIW I paid for the sunderland test ( £30 I think) and still pay for supplements. But thats it. I didn't do testing etc. DS2s improvement just on diet, supplements etc has been life changing.
But all our children are different.

Goblin ... Ditto

Unfortunately expectations can be unrealistic (partly fuelled by McCarthy et al). And someone will say their 'non-verbal' child became verbal - but that child was maybe 3 and it quite probably would have happened anyway. Which isn't to say biomed doesn't help or doesn't get some kids speaking but that it'd not necessarily as clear as you might expect.I do get what you are saying. I pretty much refuse to spend any money on 'experts' these days as the vast majority know less about severe autism/what will work with ds1 than me.

Now ds1 is 11 we have it pretty easy in terms of expectations. I'm not particularly expecting him to ever speak (although am interested in prompt salt and trying to find out more without spending £££'s) and most of our energy goes into life skills and ensuring he has fun (horse riding, surfing etc).

In terms of biomed there are signs/ symptoms that suggest it's worth having a go, and it's one reason why I bang on and in about autism being diffferent things and needing to recognise these differences and treat accordingly. In the early days we spent so much on things that it's obvious now were never going to work for him and had I understood more about autism not being the same thing or really understood where ds1's problems lay then we wouldn't have tried them. Actually thinking back I did know - but I listened to professionals who knew about 'autism' rather than ds1. So for example although I have known since he was a baby that ds1 tries very hard to communicate just has almost no tools to do it this was beaten out of me (he couldn't be trying to communicate he's autistic I was imagining it). It's only now that he's developed enough for even the the most blinkered professional to spot communication attempts that this is now accepted for
him. That's minor but affected things we tried.

I'd advise anyone to read widely, talk to lots of people but remember your child is unique and their 'autism' is quite possibly very different from another child's 'autism'.

Oh and I steer clear of anyone these days who talks of 'autism' as one thing. It's usually a sign that they'll pass out when they meet ds1 as they've never met anyone like him. And then they'll look surprised when he doesn't just do their programme.

Has to be an individual approach to get me even reading. You tube can be your friend. I became interested in Prompt SALT for example after seeing a non verbal boy of 13 - who presented very like ds1 on the video - learning to produce speech sounds and some words. I would love for ds1 to have even 10 words (he has one - mummy- and uses it a lot to do all sorts). No-one has ever bothered trying to teach him to speak so I am very interested in the therapy that does that. Now he can imitate it could potentially be doable. But I refuse to spend £££'s on the offchance.