probiotics

[robinw]

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I don't think there's a downside. I'm not sure that the immunisation thing is important or not. A lot of autistic children have had stacks of antibiotics which will obviously have affected their guts, that's why I alwasy bang on about taking probiotics with antibiotics. (Wish I'd known at the time as this is the route that ds1 took into autism).

Another interesting thing is that a lot of autistics have a high level of something called IAG in their urine (as do Gulf war vets I think so maybe vaccination is involved). This supposedly arises because of weird gut bacteria (it is a derivative of tryptophan I think- one of the amino acids anyway- and the weird gut bacteria do something strange with it). The thing about IAG is that it makes membranes leakier than usual so substances which wouldn't usually pass into the blood stream do.

Certainly a lot of autis take probiotics regularly.

robinw- there's an article in the Sunday Times today about MMR and autism and the possible problems with having a leaky gut. I think they are referring to cases of enterocolitis though rather than just having leaky membranes. Mentions the gulf war vets as well.

www.timesonline.co.uk/article/0,,2099-931673,00.html

oh read it properly now and in fact seems to talking about leaky membranes in general. If that was the case then I guess the presence of IAG in the urine could act as a red flag to proceed with caution. Although that would mean that the leaky gut would have to be there first - and not that the vaccination was giving rise to the leaky gut.

robinw - read your post about probiotics and allergies on another thread yesterday (can't find it now) but managed to find 8 articles in the lancet (mostly about excema but also food allergies) - will be asking DS's allergy specialist whether I can/should start taking probiotics at the end of this pregnancy - only skim read them as Ds hovering but certainly interesting. Thanks.

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My pead showed me a study recommending probiotics for last 3 month of pg.

robinw, thanks for your comment about andrew w. etc. that is what i think - you have put it very well.

robinw- he didn't start by over-reacting to be fair. His position became more polarised as time went on. Also there really aren't any people who will touch these children with a barge pole. No-one wants to examine them or look at them.

I think Andrew Wakefield thinks that the MMR causes the gut problems along with the autism, but of course that's not necessarily the case. I get a bit confused, becuase Paul Shattock's team look at leaky gut - but not the colitis that Wakefiled studies. I did speak to Shattock when ds2 was born to ask whether they could test for IAG - but they said no- they couldn't tell in advance who would need a gluten free casein free diet, but they said if I wanted to be safe I could keep ds2 gf until he was 4 or 5, which is what I have done/am doing (its easy because then he just eats the same as ds1). I'm not sure in this case whether the leaky gut develops - maybe as it does seem to be linked to dodgy gut flora (I think) - or whether its there from the beginning.

Have you looked at the Visceral webpage? I haven't for a while so I'm not sure what they are studying at the moment.

if its any consolation our paed thinks there is some link to mmr and autism, but not in all cases (as expected) He is not allowed to speak publicly about it though...

sounds about right fio2. Sucks for the parents though doesn't it. damamged child but no-one's allowed to say anything. I think I'd feel like bombing whitehall.

I think the Wakefield/shattock camp reckon about 10% of autism cases are triggered by MMR. Sounds about right to me- judging by my samll sample size of people I've met. Those parents tell a different story to those of us who don't think the MMR was involved. And - encouragingly for them- their children seem to have a better prognosis- given the right sort of treatment. I think my friend's little boy on hear the silence is a good testimony to that (mum told he wouldnever talk etc).

dont talk to be about not being allowed to say anything, I know how they feel. The genetic dr could not rule out cp btw, was shocked and has got my maternity/labour notes - weird isnt it? I hate all this, oh well its going to cost us too much money crap. What about the families lives they are affecting...gits!!! Must be a link with mmr, why all the cover up, I will get shot tommorrow

I am sure your prognosis will be good jimjams, and you are doing your best I know how frustrating it is though...

lol fio2.

Same thing re cp and birth cock up happened to a friend of mine. Her dd is severely disabled (age 5 - still tube fed etc) and her birth notes have gone missing - now there's a surprise.

Not sure about our prognosis. I'm adjusting it daily (only way really). He's gorgeous though so I don't care.

really? I know someone exactly the same, boy with cp - labour notes gone missing. Hope mine havent! Apparently mine was normal according to dd's notes!

Dont worry about prognosis, I am coming to terms with our dd's. Weird how your fears are never as bad as you think when you live them. She is lovely too

I bet she is fio2. I'm sure labour notes are dodgy. I had a squizz at ds2's when I was in hospital. this dr had written that she had had a conversation with me- warning me of this risk and that risk and that I had agreed to go ahead. No such conversation had taken place. Knowing what I know now I would have complained like mad, but I hadn't entered the world of SN then so I didn't realise quite how much the systeem is stacked against you and how screwed you are if anything goes wrong.

Another friend's dd is probably going to be dxed with cp (to add to her many dx she already has). Some suggestion has been made about her birth (placental probs) but he dd's AGPAR was 9 at birth. Apparently its not necessarily a good indication though which I didn't know.

It's weird isn't it when you find a pro who is shocked at what hasn't happened. Same thing happened to us when we went to see a consultant about ds1's hearing/lack of speech etc. She said she was horrified that we hadn't been sent down the autism path. We pointed out that we had been there- 8 momnths previously - after I'd raised concerns and it had been ruled out. Grrrr indeed.

Jimjams is right, Andrew Wakefield did not over-react until pushed into a corner and villified and also once he'd been forced to leave the Royal Free and could then speak out more independently. He originally worked on a study and produced the results, no more and no less. I've seen him speak twice, quite some time ago now and when he was still at the RFH but he was very moderate and suggested that his findings might benefit from more work. Both times he stressed that he was not anti-immunisation, not sure what he'd say now though!

its on channel 4 NOW!!!

very biased though

Davros I think his eldest 2 had MMR, but his youngest two had singles. I think they're all vaccinated though (remember reading this somewhere). Could be wrong though.

He's speaking at the vaccination conference next November in London. I'm planning to go- why don't you come as well (the second day is all about autism and vaccination, the first day is more general- you can book either or both days and its not too pricey).

what would the signs be of porr gut development?
(sorry to hijack this thread....seems the best place to ask atm)

Sibble, you don't have to ask your dr's permission. Probiotics eg Danone or Yakult are absolutely fine and healthy to take anyway. don't be put off. I took them and would definitely take them again, esp for a cs delivery.

Although Danone and Yakult are full of muck but someone also said somewhere that sugar is needed to activate the probiotics. Don't know about that but you can just get the probiotics at health food shops or from the Nurticentre and put it in whatever you want.

there;s meant to be some research going on into prebiotics- can;t remember how they work- in relation to autism. At uni of reading. ds1 was meant to take part but its been postponed due to lack of funding.