MMR single vaccines just a bit of info please.

[leander]

I feel a bit nervous posting this as i dont want to start anymore arguments,but we got our app through for ds's mmr.We would prefer to give him the single vaccines but people keep saying they are not licensed and some say they are.I will go and talk to my hv about it but I thought the combined wisdom of mumsnet may be able to tell me more.

Also the problem with diagnosing whooping cough is that it has to be done inside a certain timeframe of contracting it, or else the results will come back negative, even if it is obvious what is wrong, and unfortunately some doctors will believe the results on the paper rather than what is presented to them.

aloha- this is a very common problem. Likewise for sideeffects. A friends dd- fitted and had measles rash following MMR- dr said is was a virus and refused to yellow card it - even though a HV said it was definitely a measles rash.

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sb34???? ridiculous!! DH passed me an article today written by a lawyer from Alexande Harris (a law firm). They're representing 1000 families who's kids have been MMR damaged.

allegedly, jimjams, allegedly

not all autism bundle- I think some of the cases ae fairly straightforward vaccine damage cases. Oh I forgot that doesn't happen does it.

never said that, of course it can happen in the same way that certain diseases can damage children. but they wouldn't need a lawyer if it was already proven. good luck to them, if they have a good case. the risk of damage occuring is something any parent factors into whether they opt for a vaccine at all.

Eight representative cases are going to court towards the end of the year i think. They've been chosen as they apparently well represent the problems these childrn have. I think the class action is currently underway in the States as well.

I think the thing that winds me up about the allegedly bit (not from you - just in general) is that it is usually followd by "the signs of autism only become apparent after 18 months" which is such a pile of c* it is untrue. DS1 was and is soaciable, friendly, affectionate- and so the social signs of his autism only became apparent after 18 months when he'd lost language and wasn't speaking. Up until then aschildren don't speak that wasn't really apparent. But he had loads of signs of autism before then. Firstly he wasn't pointing (having a 12 month old ds2 I can now see what a huge omission that was). Secondly he wouldn't touch grass or carpet. If you sat him down on the garden or on carpet without trousers on he'd do this weird thing of holding his legs in the air. He still won't walk on grass now (even with shoes on) and he's three and a hlaf. One "test" we did with ds2 was to put him on grass and sand when he was just sitting up- and thank god thank god thank god he made no complaint. Even younger than that there were signs- he would watch ceilings and light fittings for hours. I almost passed out when at 3 months old ds2 copied me pressing a button on acot toy- and as for when he just started drinking out of his beaker at 4 months- well I cried (I had to teach ds1 at 18 months by standing behind him holding his hands over the beaker and doing the action for him- for about a week- one result of autism is that the children don't copy). A friend of mine with an autistic ds1 and ds3 said she knew ds3 was autistic as he was happy to watch trees for hours. She took him to the SALTs at 8 months and told them he was autistic- they told her not to be so daft- but guess what he got his diagnosis at age 2. The point being that these stories are so so so different from the people I know who's kids regressed after the MMR that when they are then told they just didn't notice before aggghhhh. I can say categorically now- I know without a shadow of a doubt that ds2 is not autistic. if I was to watch a major regression occur within days of receiving MMR I think I would want to kill anyone who told me I was imagining it!

I read on the WHO website in the last two days though that a third of autism cases show regression anyway though - they are not always obvious before 18 months. Obviously I don't know as much about it as lots of people, but I could believe that cases are different. This article said that this regression (loss of speech etc)happened even before MMR was introduced.

JimJams, that sensory thing is interesting (I don't mean that it isn't awful for you, of course). Didn't one of the children on Child of our Time that they were concerned about have a similar thing with carpet? Do you know why this is?

WHO article

This was endorsed by the WHO

musica- my son showed regression. He said more at 12 months than my ds2 does now (but I'm not at all worreid about ds2). In fact he started to talk at 8 months and stopped at 15 months. But there were plenty of other signs of autism (the grass the carpets the staring at ceilings). His regression is totally different to that described by MMR damaged children.

Also although he could speak and understanding was progressing ds1 showed signs of potential language problems- the big one beng no pointing. These MMR children were pointing (and beieve me pointing is a huge area in the autism world).

Just because DS1 regressed and that wasn't caused by MMR - it doesn't mean that another child's regression wasn't caused by it.

I know you can't generalise at all - every case is specific. It just seemed that lots of people (not you) point to regression as some sort of proof that it was some external factor that caused it, when in fact it may be a 'natural' feature of the condition.

I had heard about the pointing - another sign I heard of was being unable to play with a teaset - i.e. not engaging in imaginary play.

Thakyou for that link Musica.

problems with imagination is part of the triad of impairments. This can cause problems though as a lot of so called experts seem to think that "impairment" means inability. SO during his assessment I was asked if my son other played imaginitively with little people- I said yes The SALT (who is a supposed autism expert but doesn't seem to know anything about the condition) didn't believe it and said that he couldn't possibly know that the figures represented little people blah blah blah. Then in one assessment session he was playing with little people making them go down a slide saying "whee". I pointed this out to her- and she just said "hmmmm".

The problem with this fixed idea of autism (and I'm talking about professionals here not joe public) is that other problems get missed. For example I have spent the last year telling everyone we have come across (in a professional category) that my son has problems with speech which are separate to his autism. I've written reports. I've told everyone. I've been told that I'm imagining it and that his expressive and receptive language are at the same level and that he doesn't understand anything without gestures (absolute b- luckily his nursery manager tested him and agreed with me so I knew I wasn't going mad). In all this time not one person bothered to actually listen to him speak- until last Friday when we finally got an NHS speech therapist (lovely lovely lady). Anyway she listened to him. Checked his hearing test results- and guess what the sounds he isn't making (most consonants) correspond to the part of the hearing test he failed on. ie he probably can't hear well enough to learn to speak properly! I'm furious. I have been saying for a year there is a problem with his speech and I've been dismissed as a mother who can't accept her son's autism (although I've started every conversation saying 'I fully accept he is autistic but blah blah).

I think this is why I feel so sorry for the parents of the MMR damaged children. Noone listens. My friend has been telling the hospitals for three years that her autistic daughter has got something wrong with her joints and she's been told "all autistic children are dyspraxic". Finally after three years she manaaged to persuade someone to actually watch her daughter walking and she's now been diagnosed with arthritis and has been told she will probably end up wheelchair bound! How many other stories are there like this? If they can't get these cases right god only knows what they're doing with vaccine damaged ones when a lot of doctors seem to forget that vaccine dmage in any form even exists.

aloha- sensory problems tend to be at the root of autism. hypersensitivity to sound is a common one. I rather like the quote from one woman who's daughter autism was "cured" (helped a lot anyway) by auditory integration therpay (which corrected her sound problems) that her daughter hadn't been crazy- merely crazed (she could hear toilets flushing three houses away). Not sure why it happens- although there are many theories. A lot of doctors don't even recognise it - although high functioning adult autistic after high functioning adult autistic has described these same problems. Oh my goodness the medical profession not listening again- now there's a surprise

musica- just followed the link- that taylor et al paper has been heavily criticised by just about everyone (I think it's a party piece for statiticians). I'll see if I can find a "scientists discuss" transcript- there used to be one on the NAS webiste but it's been removed.

aha yes here we go....

good discussion of taylor paper

One more thing about that taylor paper (endorsed by WHO). The authors themselves say in the conclusions something like "this is not to say that some children may not suffer a rare idiosyncratic response to the MMR". Well surely that's what they were meant to be looking for? A rare idiosyncratic response. Noone's saying that all autism is caused by MMR- just that about 10% may be- a pretty rare event then.

By that jimjams, I assumed they were simply referring to the risk of vaccination side effects / reactions which are well publicised. In terms of numbers, roughly how many cases a year would 10% of autism cases in the UK translate as?

I don't know croppy- the whole paper looked at MMR and autism so I thought they were referring to that.

How many children- 6 million dollar question really This is the problem. Accurate records haevn't really been kept. The best guestimate at the moment is one in 85 children of primary school age on the autistic spectrum (the numbers decrease in older age groups). The problem with this is that it would include AS children. I could be wrong but all the MMR damaged children I've come across don't really have Asperger's type problems- they seem to have full blown poo smearing autism to put not to fine a point on it.

This is where it does get confusing when you try to look at whether there's been an increase. The numbers have increased partly because children who wouldn't have been classified as autistic previously are now. This would include many AS children, and possibly even children like my son. Other earlier diagnoses would have included things like childhood schizophrenia. TBH it can still be difficult to get a dx even now. We were told initially that there was no way that ds was autistic (by 2 different people). A year later we were told by a different person that she was "horrified" weren't well down the autism road already. It's not easy to dx and these children have complex difficulties. This just adds to the problem of working out what is going on with the MMR. Basically I think the dofH needs to stop playing the numbers game and actually look at the children who have supposedly been damaged. Researchers have found biochemical differences, and then of course there's the evidence of measles virus in the brain and gut. Until the children are actually looked at I doubt we'll get to the bottom of it.

Whilst waiting for a prescription today I picked up MMR the Facts leaflet. Had me laughing out loud. Under side effects it said that SSPE NEVER occured from MMR (this is the really horrible measles complication that involves the brain and eventually kills you). In fact vaccine manufacturers themselves concede that SSPE has occurred in a few cases and the vaccine damage payment unit has paid out for vaccine induced sspe in the past. The govt has now said it will no longer do so as sspe (even in children with no history of measles infection) "must" only follow wild strain measles- and therefore vaccinated children who have developed sspe and never had measles "must" have had a sub-clinical infection. It's easy to manipulate the figures if you make them up!!! Now they may be right, but again they can't say conclusively either way- no-one really knows what is going on.

More research and a few open minds are what is needed. And if just if the department of health happens to be wrong and children are becoming autistic following MMR then that is an absolute tradgedy that deserves respect- and to be taken seriously. Autism affects every minute of every day. We decided to go for a walk this weekend- itwas an absolute nightmare- ds1 finds it really difficult to walk from tarmac onto a path (sensory and perceptual problems again- I suspect his sense of depth isn't fully developed) so we can't even go out for a walk without a major panic attack and screaming. We dragged him in one direction but he only calmed down and stopped saying "a a an" (grandad's car) once we'd turned around to go back. We moved down to Devon to enjoy the sea and the moors, but after a few months he decided he wouldn't go anywhere near a beach or the moors. This may sound trivial but that type of problem comes up everywhere. For hois birthday we took him to the zoo. i thought we weren't going to be able to get out as he refused to walk from the tarmac onto a bridge to get to the exit. In the end dh carried him. If we go somewhere and people are standing on the stairs he has a fit and tries to throw them off- screaming and tugging them. You try explaining that to people. I just think that the effects of autism are sever enough that the doH should take potential causes seriously and not justy ignore them becuase they don't like the consequences.

All the things you say make a lot of sense, Jimjams, and I am truly sorry for what has happened to you son. But you are a very well educated, intelligent and articulate woman who knows the research papers etc. My best friends SIL has 2 autistic (twin) daughters, which is a real tragedy for her. My best friend (who is a GP) said that by a year old these girls were both obviously autistic, but her SIL maintains they are vaccine damaged and is hoping to sue if the class action is sucessful, even though they were vaccinated at 18 months. Not everyone can look at is as dispassionaltely as you are able to, there are a lot of people out there who are looking for a reason and will grasp at anything that gives an explanation, even if it doesn't add up.

susanmt- I know this happens of course, and it's difficult. In fact I think it's rare- almost everyone I know says that their child showed signs from birth. However this just confirms my view that really we should be looking at the children. All the people I know who link MMR talk about great physical changes within weeks (sometime days) of the MMR- their child screaming in pain, massive diarrhoea- fever etc. By looking at the physical differences it may become possible to spot an MMR damaged child (they seem to have distinctive urinary profiles for example) and of course ensure that they are provided with suitable compensation. I quite like the US system. For each vaccination given the manufacturers pay so much into a central pot. The more dangerous the vaccine the more is paid per shot- this money is then used for compensation- I think if I remember correctly DTP is the most dangerous (probably because of the "p" and MMR the next. Not sure though.

I would like to know what is going on with all autistic children really- just because if you can get to the metabolic bottom of it then there is a lot you can do to correct the sensory problems. For example we found out pretty early on that ds1 has a problem with his gut- and a gluten free diet has made a huge difference. Having discovered now that he's probably been slightly deaf in one ear since birth explains a lot more (such as why his autism comes out as "mild" on tests like the childhood autism rating scale- but yet his language and speech seems so severely delayed). Unfortunately not many people are looking. Half the researchers involved in autism seem to have autistic children! There is some good research going on- I'm hoping to have a sample of poo analysed by Reading Uni in the not too distant future. His urine results suggest a leaky gut- which can be caused by having strange bacteria in the gut- this then gives the gluten problem. if this is so then I may know which probiotics to target etc. If the leaky gut is sorted he won't be getting wierd drug like compounds from his food and so some sensory issues may be sorted and life will become a lot easier for him.

having an ASD child has taught me a lot I have to say. It's changed me so much I feel I don't even recognise the person I was three years ago. The only thing I would change about him is the anxiety. He's a loving, affectionate little boy but so anxious it cripples his daily living. (the anxiety comes from the sensory problems and so is at the root of his autism). I'd change the whole education system and the so called health service as well of course (why is it that theme parks can arrnage it so that autistic children don;t have to queue- but hospitals can't- that's my big question at the moment ) Also why is it that clinical personnel- doctors salts etc are unable to listen to a parent- I'm sure there must be a word for it 'blanktheparentand they'llgoawayitis" or something.

And it seems to me that money and services should be available to all children with special needs, regardless of the cause. Why should your son not have the facilities that he needs because the cause of his problems is not 'linked' to MMR? The needs are the same,the provision should d* well be there for him. I don't know how you have the energy to keep going, Jimjams.

I was really impressed by Nick Hornby's feature in the Observer a while back. He was very eloquent on the dismissive attitudes of drs and researchers -particularly referring to the guy problems that many autistic children seem to suffer from. He implied that the reason the gut problems weren't treated or taken seriously is because the medical establishment seem to think it might open the door to more fears about MMR. Do you agree with that JimJams?