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OMG oh my god

159 replies

Jimjams · 20/01/2005 14:26

OK you know how I've always bleated on about ds1 regressing following eczema herpeticum at 11 months, and how we felt the antibiotics were an issue. Well just read this . DS1 was prescribed augmetin duo by a consultant dermatologsit- the pharmacist questioned it when dh picked it up - as being veery strong for an 11 month old (and the packaging said not for under2's). But we gave it becasue it had been consultant prescribed.

Buggeration buggeration buggeration.

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dinosaur · 22/01/2005 13:54

jimjams you are incredible to be posting all this when you must be so busy. I stand in awe.

(DS3 is shaping up to be an ear infection baby - he had a perforated eardrum at New Year - all this runny stuff poured out!
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Saker · 22/01/2005 13:57

Jimjams

Thanks for all this stuff. I haven't had time to look at it properly yet but will do.

Jimjams · 22/01/2005 17:05

ds2 did that just before xmas dinosaur! I was at his SALT appointment - he told me before he went that his ear was dirty but I didn't pay any attention - thenhalf way through the apppointment I realised his eardrum had burst!

I come on here when feeding mainly- and because of the section I have had a lot of help. I suspect internet time will be cut dramatically from mid next week when I'm by myself- so I'll be feeding and chasing the other ds's at the same time.

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Saker · 22/01/2005 17:47

Okay, so here goes. This will probably get me thrown off the special needs board for good . I want to say that I have a PhD in biochemisty (not to show off or to imply that automatically makes me right, but so you don?t all think I am totally spouting off the top of my head). (I think you have a PhD in a biological subject too Jimjams so obviously it is still possible to have different views ).

As far as I can see the evidence that Andrew Wakefield has that the MMR has cause autism in a subset of children is
(a) parents can see a link between the onset of autism and the MMR ?
parents report that these children reacted badly to the MMR with fever and convulsions and subsequently regressed. It doesn?t follow that the two things are linked. Has anyone looked to see how many children reacted badly to the MMR but subsequently recovered and didn?t develop autism. And how many children regressed at that age without having the MMR. As such a small number of children are thought to develop autism in this way maybe they are just a subset who happened to react badly to the MMR and happened to start to regress around the same time. I am not saying you shouldn?t listen to the parents ? but this can only be a starting point. Proper studies then have to be carried out to be certain of anything.
(b) vaccine strain virus has been found in the gut and the CSF. Well firstly I understand this point is hotly disputed and I know that this type of methodology can be difficult to use, but even if you accept that is the case ? it is a massive jump from that to saying that the MMR must have caused the disease. As you have pointed out these kids have bowel problems and metabolic problems. It might be that they are sequestering virus in their gut because of their illness rather than that is actually causing the illness. You would need to include a control group of autistic children who had not received the MMR to compare to plus a control group of NT children who had received the MMR. How do we know that all children don?t have vaccine virus in the gut?

If you accept that the MMR does cause autism, why would single vaccines be safer. I have heard people say that to give such a big dose of antigen at once is more than the body can cope with. Well the body is coping with antigen ?attack? from all sides every day so I think that is unlikely. Either was has anyone actually shown it is safer? If not it is very dodgy to be recommending for children who you believe might be knocked off course by an adverse immune reaction.

I hate patents and can never understand them very well but from the Brian Deer website all I could get was the title page which doesn?t always reflect the content of the patent very well. However that did state that the patent contained a composition that could be used as a measles virus vaccine and also as a treatment for MMR virus mediated disease. It would therefore be in Andrew Wakefield?s interests to prove that such a disease existed if he is patenting a treatment for it and I would feel it doesn?t make him entirely unbiased.

This is how I see things from what I have read. I haven?t read everything or followed every detail and so I may have missed something important. I know this is really controversial and emotive subject and I don?t want to upset people. I am happy to end the discussion if it is upsetting people.

Jimjams · 22/01/2005 18:13

Saker- point b)- I'm failry certain the control has been doone- NT children do not have the vaccine strain measles in their guts and CSF. Not sure about autistic not linked to MMR- but obviously collecting CSF is fairlky invasive so not easy to obtain!

As for listening to parents- of course it doesn't prove anything. All I mean is that its not good enough to just say "oh parents never notice un til 18 months must be a coincidence" That's the assumption that has been drawn over and over again without any evidence at all.

Single vaccines may not be safer. Wakefiled there has relied on parental evidence. However anthrax is now known to be less safe in combination- so sometimes vaccines can react differently to expected in combination. And there is a possibile mechanism as mumps alters the permeability of membranes and measles of course lowers immunity. Actually catching rubella (wild type) early in pregnancy increases the risk of the child being born autistic so maybe its rubella interacting with mumps (coudl be as problems were never really reported wwith the MR jab either).

There was more of the patent appliction on the website- maybe he's removed it. BTW the treatment that Wakefield had patented came to nothing- they abandonned that line of enquiry years ago.

PhD in cytogenetics (kind of). Hated every minute of it and soent mosrt of my PhD moaning that I should have done a PhD in autism as that was what I was interested in (seriously). The moral being- be careful what you wish for.......

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Jimjams · 22/01/2005 18:14

will try to find the reference with the NT control group- but for now bathtime (which I have to say is a PITA with 3)

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Saker · 22/01/2005 18:36

Even if the NT control group exists - you might be right -I have heard Roy Pounder (who worked with Wakefield) speak a long time ago but can't remember now - it still doesn't prove a link between autism and MMR.

Do you not believe any of the Brian Deer stuff?

good luck with bathtime, it is enough of a nightmare with two and neither of them are babies. Somehow having their clothes off seems to make them go hyper!!

Jimjams · 22/01/2005 18:39

\link{ www.autisticsociety.org/article157.html\this is easy reading} and gives all the cloak and dagger stuff. I'll try too find the paper now with the control samples in.

BTW saker- yes agreed about presence of measles virus not proving causation- that is O Leary's stance. It surely does suggest that further research is needed though and that there may be a group of children who are vulnerable. Add the finding to the seizures, and rapid change in behaviour following MMR and surely the most parsimonious explanation is that in this subgroup MMR had something to do with triggering the condition. (of course the underlying cause will be a genetic pre-disposition- but we're not slave to our genes- look at PKU).

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Jimjams · 22/01/2005 18:41

I''l try the link again

I don't belive the Brian Deer stuff (what do you mean by believe?) because there are so many errors in it! I know the MMR story well enough to spot a complete smear campaign- he's twisted everything that Wakefield has said.

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Jimjams · 22/01/2005 18:44

here's a link to the original paper haven't read it myself yet.....

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foxinsocks · 22/01/2005 19:30

by the way jimjams, have you ever spoken to any adults who have had eczema herpeticum?

I only ask as you seem to think this may have been a trigger point for ds.

My dh has had it and it is horrible. When he has it, he describes his head 'feeling like his brain is going to explode' so although the skin is very sore, his overwhelming feeling was that it was in his head. He has a permanent prescription for (I think, though haven't checked) augmentin in case he starts getting an outbreak. He weirdly, though for no seemingly related reason, won't have jabs - he has an egg allergy (like dd) and claims it is this he reacts to but I know it isn't because most of the jabs aren't made in egg anymore. He also has weird reactions to some medications.

Anyway, just for your info. I can only imagine if a grown adult considers eczema herpeticum an absolute brain exploder, I can't think what effect if would have on a child (it must be rare in children).

Jimjams · 22/01/2005 19:40

I thought it was rare in adults! (just because I thought it was the priimary infection that caused the big problem and that reoccurences were small).
Actually you have got me thinking- when it reoccurs with your dh how much of his skin is affected? When ds1 had it it quickly affected his entire body (except his feet). I did read that if yoou have been pprimarily infected with herpes via e herpeticum that you don;t get cold soores, but instead get flare ups - but on a small scale (so wherever the initial infection was). I'm wondering now whether sometimes when he goes loony he's having a flare up that I haven't noticed if only a small patch is affected.

Something very weird went on at the time of the e herpeticum. he has a mole about the size of a 50p piece just below his shoulder blade (on his chest) Just before getting e herpeticum that initially went all crusty and wrinkly and then swelled up and started oozing a clear fluid. We covered that - and then within a few hours he was covered in this infected e herpeticum.

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foxinsocks · 22/01/2005 19:50

when he gets it now (or when he has had it recently), he literally gets one or two sores - the most common place is behind his ear or on the top of his shoulder/bottom of his neck (apparently it follows some nerve into the brain? have I got that right??!!) and the ensuing blinding migraine style headache often follows the line where the sore is into his head (if you see what I mean).

Personally, I think if you couldn't verbalise what was happening, it would make you act very strange because although the pain is in your head it is caused by the sores (which don't look particularly sore to the naked eye of someone else until it starts affecting all the other skin).

Saker · 23/01/2005 00:09

Thanks for the links Jimjams. It?s interesting that last paper is written much more carefully than the previous stuff. They have NT controls although the sample size is ridiculously small. I appreciate these types of samples are hard to come by so I suppose they plan to do it bit by bit.

However if you look at many autoimmune diseases you see many things that are different compared to controls. (Even in this study they found one of the autistic children had anti-MBP in their CSP. ) They may be interesting to follow up but you cannot say they cause the disease ? it?s like saying so and so was in the car park at the time of the murder therefore so and so must have caused the murder.

I don?t know anything about Brian Deer and his motivation, but wondered whether you accepted any of the things he is suggesting ? for example that Nick Chadwick didn?t find measles virus in the samples.

I am not saying that the original Wakefield paper should never have been followed up but in itself it proves nothing and I think it was very wrong for Wakefield to make the assertions he did based on so little evidence. He has upset and scared a lot of people and prevented them from taking up a potentially life-saving vaccine. Ironically in the paper you link to they quote evidence that suggests that children born during a measles epidemic were at higher risk of autism. So if Wakefield manages to get enough people not to take up the MMR we could get measles back again and autism caused that way in addition to all the other potential consequences of measles. I think it was even worse of him to suggest that the single vaccine is safer. If he really believes that measles vaccine can cause autism as part of the MMR he should have really good evidence to suggest single measles vaccine does not. He does not have that so all he is doing is encouraging people to spend extra money and time seeking out something that could be equally dangerous based on his assertions.

Socci · 23/01/2005 00:35

This reply has been deleted

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Jimjams · 23/01/2005 09:15

bit unfair to suggest that wakefield is encouraging people to spend money-- when the original paper was published single vacccine was available on the nhs. before publication he had tried to talk to the dept of health about his concerns - he had meetinga- and no-one listened. at the time he didn't know how many children were involved. the figure of 7% was is recent. i get the impression that he went public because he couldn't get anyone to take his concerns seriously- and he was so worried by what he saw that he wouldn't have been able to sleep at night if he thought this was continuing to happen to children regularly. the children he saw were severely autistic and i suspect some of his response was an emotional one at having suddenly become involved with families of autistic children. there is something about a severely autistic child that fires some people (just something i've noticed in people's responses to ds1- and towards us). It certainly was not something that was sensible but at the time i think he truly thought lots of children were being damaged and he understood what that meant for the children and their families. i have no idea whether he would have done the same thing had he known that small numbers were being affected-or whether he would have thought they were acceptrable collateral damage for the good of the vaccination programme.

BTW the original lancet paper goes out of its way to say that the presence of measles virus does not establish causality- and O leary- who hasdone a lot of recent work continually says the same (loudly- politically I suspect that's sensible).

Why do you think that giving jabs singly is more dangerous? They're the same strains same everything as in the MMR. The only danger comes from being unprotected for longer but the goovt has made that worse by interfering with the import of mumps vaccine. Of course people are forced to use unregulated clinics- but if the govt didn't try to bully people into having th MMR then that wouldn't arise.

Of course I accept Nick Chadwick didn;t find measles virus in the samples. But I have done enough molecular Biology myself (spent a year hovering over a PCR machine) to know how difficult it can be wworking with tiny bits of material. I'm not sure how contamination could have occured so I'm inclined to believe the results for Wakefield et al. I also worked in a lab next to a bunch of peolpe working on ancient DNA and their poor PhD students had major problems amplifying DNA.

TBH at this stage I think it doesn't really matter whether Wakefiled is right or not. There's enough work out there that shows it may be a problem in a small number of children. More work should therefore be carried out and single vaccines used (and looked at themselves obviously!) until the question is answered. That's all wakefield said. Now it may be that the dept of health thinks that the numbers involved (something like 3 or 4 kids per 15000) is acceptable collateral damage. Fine. In which case they should be honest enough to say that publically and compensate those who are damaged.

I was given an immunisatin leaflet by my HV on Friday (she saiid she had to). On its way to the bin I was delighted to read how safe thimerosil is. (Mercury is so safe my friend John Krebs is telling pregnant women not to eat tuna- but the dept of health thinks its fine to inject into an 8 week old baby- yeah right).

Socci- I know very little about the make up of antiD. Although I've had it several times (never had it during pregnancy though- only after birth). I suppose like anything it depends how much you really need it. If you were showing antibodies during pregnancy II guess you need it and need to take the risk (although would be worth seeing if a thimerosil free version was available)

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Jimjams · 23/01/2005 09:20

Regarding wild measles infection. Apparently you're more likel to become autistic if you catch wild measles and chickenpox in the same year or wild measles and mumps. For a while research was looking at whether catching chickenpox in close proximity to MMR increased your risk of autism (anecdotal evidence suggested it did). However last time I spoke to the AUtism Research Unit they saiid that they hadn;t finished their analysis but it looked unlikely.

Of course you can alsoo become autistic if your mother catches rubella very early in pregnancy.

Incidentally you can also become autistic if your mother takes thalidomide very early (5/6 week) in pregnancy.

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happymerryberries · 23/01/2005 09:21

Re the Anti D injection. I have located the core SCP (european) for the preparartion. However the actual make up will vary from preparation to perparation, in the non active ingredients. So to be certain, you would have to have the trade name. The one that I could find on the net did not have mercury in it, or any other anti microbials. Like Jimajams tho I would say that the risk of the jab is much less than the sure risk if you don't have it.

happymerryberries · 23/01/2005 09:23

Oh and out of interest is John Krebs related to 'the' Krebs? If so I colaborated with one of his relatives while doing the PhD. If so, small world, science.

Jimjams · 23/01/2005 09:26

do you know I don't know - I was being a bit rude tbh - Sir john used to be head of NERC. then the food standards agency. He isn't my friend at all- I met him at a lunch once (and I have never seen such a disgusting level of brown nosing in one room- some people were seriously after NERC's money )

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happymerryberries · 23/01/2005 09:31

I can imagine . Nothing quite as desparate as people chasing grant money!

My PhD supervisor did her PhD with 'the' Krebs. I was quite impressed!

Jimjams · 23/01/2005 09:38

That is impressive hmb!

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happymerryberries · 23/01/2005 09:59

When I reach the Kreb's Cycle I point out to the kids that this makes them The Great Man's academic greatgrandchildren.....so they have to get it right!

Blossomhill · 23/01/2005 11:13

OMG again. I had to have anti-d's as I am rhesus negative. The whole thing is so worrying

happymerryberries · 23/01/2005 11:17

Please try no to worry. the only info that I could get on the net showed that at least one anti d has no thrmosyl. I can't give you a guarentee....but found nothing immediatly alarming