Interview 26

Brief Outline: For all immunisations' Followed recommendations of health professionals. Believed media only presented one side of the argument.
Background: At time of interview' married, 5 children aged 21, 18, 16, 4 years (son), 2 years (daughter). Parent's occupation' Mother- Director of Communications, Father- Professional Actor. Ethnic background' White-British.

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He thought a recent documentary was one-sided.

Well I thought that what was missing was that they didn't, that they seemed to have expert after expert after expert who, and very cleverly who seemed to be, start off anti-MMR who had suddenly came out, pro-MMR. And so either, which was very clever because you thought, oh great, you know, they're going to say what we all believe now that, that this is not as safe as they make out. And then the whole conclusions seemed to be NHS propaganda in that this is a much safer alternative. How interviewing a poor child who had suffered brain damage through wild Measles was of course valid, but what they didn't do was interview a parent or, or indeed a child who had been apparently affected by the MMR. 

The, the balance didn't seem to be there, we never got the parents who were talking about the possible MMR link were, were dismissed as kind of lunatic fringe or charlatans. And we are, we're people who have suddenly had to cope with a massive change in our children following the MMR. Now, whether that, whether there is a scientific link we don't know.

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Talks about their difficulty in getting the doctors to explain the reasons for his daughter's...

They're puzzled that it's so episodic, and they tell us quite frankly that they are. We have actually a written report that says, and they've admitted this verbally, if it's not a wild virus, it's certainly not chicken pox they say, if it's not a wild virus then it almost certainly is the attenuated measles virus in the MMR, which shocked us. That there was this admission. It's buried, but it's there, it's not buried in a kind of a suspicious way, but it's there in the verbal report. So this we thought was actually a very positive healthy sign. But then it was accompanied by a lot of backtracking. 

We saw the man's boss and he just basically poo poo'ed the whole thing, 'Nonsense, this never happens and the MMR's perfectly safe.' So we were back to square one in a way, and because he'd obviously passed this on to our neurologist that we were seeing, the neurologist then said, 'Apparently it isn't what I thought it was.' And so again we were being gently stonewalled again, and whenever we've mentioned the word autistic it's like we've sworn the most obscene imprecation known to man. 

So I now say well symptoms that are like symptoms on the autistic spectrum but I know that MMR doesn't cause autism. I have to add that rider every time I talk about her symptoms. It's quite clear that she isn't congenitally autistic in terms of that it was something that she was born with but nonetheless, whatever happened to her has caused symptoms that are like symptoms on the autistic spectrum. And there is no doubt about that I am absolutely convinced, if this is a natural occurrence that some weakness in her make up so be it. If it is something else that's caused it so be it. But something overnight caused her to have regressive behavioural changes, disengaged behaviour that can only be described as similar to autistic symptoms.

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More information should be available on the side effects of immunisations.

I now realise that although we had quite a lot of information at our fingertips, we didn't really, we didn't really have quite enough. Again it was terribly difficult, even the poor chemist couldn't get hold of the, the side effects leaflet from the drug company because he, he knew our daughter and was appalled so he was trying to help us but he couldn't get hold of a copy. But even, even the admitted side effects there's a rider to every one of them, 'However, we don't believe our drug causes this' of course they, they have to put that so the whole thing is just a bizarre, it's like a mass of cotton wool, you enter it and then you get nowhere because you're, everything's muffled it, it's just. There seems to be no clear answers.

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Would have preferred the doctor not to have dismissed out of hand his concern that his daughter...

We also had a really bad time with doctors as soon as we mentioned the three letters MMR it was almost like a switch flicked and either they got incredibly defensive or we were blinded with apparent science. And I said, 'Look, please, you know we're not interested in scientific evidence. What we're saying is that there are three possibilities, and you've discounted the trauma,, this leaves the chicken pox or the MMR as possible culprits.' And at every turn we were stonewalled. 

There was one day when I went in and a doctor was talking to my wife who was in tears and was telling her that it was none of these things and that they were going to look for a sort of mystery virus. And I said, 'Well why are you looking for a mystery virus when you have a possibility that three cultivated viruses that were injected into her may well be responsible?' And he said that they weren't even going to consider it. And I said, 'Well surely that isn't logical?' I didn't question his scientific or medical knowledge, I said, 'From the point of view of logic surely these should simply be investigated.'

And in fact he and I had a stand up row, on the ward, in front of all the other parents who got upset of course. I tried to keep calm and as far as I know I was calm, at one stage he turned to my wife and said, 'You're getting very emotional about this.' And my wife had to walk away because what she of course later said she wanted to say was, 'Well, you know, if you can't get emotional about your child having what appears to be some kind of brain damage, what can you get emotional about?' And I said to the doctor, having my wits about me a little, 'Do you have children yourself?' and he said, 'No' I said, 'Well I'm sorry but you can't possibly know what it's like to have a child who appears to be brain damaged who is apparently totally healthy two weeks or so ago.

I would have just liked the doctor to have said something like, 'We understand your concern.' He may even have said at the time, 'personally I don't think that that's responsible, but of course we'll look into it.' And if he'd said just that I would have been reassured. He didn't listen and in fact he lectured me and not only that he started to argue with me.

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Explains the changes in their daughter at the time she had her MMR vaccine.

Five days after the MMR I returned from having been away for a day and suddenly noticed that my daughter was stammering. I've since been informed it's not a stammer it's called word search but I'm not sure because she stammers on her name. She clearly doesn't forget her own name so I think it may be a mixture of searching for words but certainly there is some kind of genuine stammer as far as we're concerned. And allied to this was a very strange eye movement, which I can only describe as typical of a brain damaged child. I work with brain damaged children at work and in special schools around here and I've had experience with children who've suffered trauma-type brain injuries so I thought the eye movement was fairly typical of some type of injury or brain damage, and of course I was incredibly worried. 

Almost in the same breath one noticed that she was much regressed in terms of literally gagagagaga baby talk, which she'd never done, even when she was at the appropriate age she seemed to just learn words and so she never did this baby talk. And the other thing we noticed was that she was reluctant to make eye contact. 

That evening I took my daughter to casualty. Nothing was better, she was showing the same symptoms, if anything they were a little bit worse. I said that, 'My daughter has suddenly developed these odd symptoms.' And quite frankly I was met with a kind of blanket of 'so what?' disbelief. 

I was very fair, I said that there were three possible causes, there may well be others but these things have happened recently, she's had chicken pox about a month ago, she bumped her head about four days ago,' so we were very fair we did mention all these things, but she recovered straight away, she didn't lose consciousness and she told us all about it. She'd bumped her head a little bit so that could have been a possible cause of course. The other cause, the other possible culprit was the MMR, five days before. 

It's also worth noting that just before she developed these odd neurological symptoms, she developed a rash it looked like a typical measles rash on her face. We actually said at the time, 'Oh that's her getting the measles' rather casually. She also had pink rims to her eyes, it looked like conjunctivitis but there was no gunge. 

I saw about three or four doctors, two conventional ones and then a paediatrician. We finally gained admission to a ward, again where we were greeted with a certain amount of scepticism. I stayed in overnight with my daughter.

The following morning some paediatricians looked at her. I did describe it as episodic which it was at the time and another doctor actually witnessed quite a bout of stammering and said, 'Oh this is quite normal, speech doesn't develop'' I said, 'No, no I'm sorry, she's never had a stammer in her life, she can actually speak very well. This is completely new and it's overnight,' and these three possible causes and so on. And he said, 'Oh well, you know, go away for six weeks and go and see a speech therapist.' I said, 'No you don't understand, there is brain damage here, I'm certain there is some kind of overnight brain damage.' 

The following day again, the paediatricians listened and were slightly more sympathetic but again you could see the scepticism because she was running around playing with her brother and without any apparent problem, and with, with very little hint of a stammer or stutter.  

It was really only because I insisted that this happened occasionally that they asked whether we wanted her kept in for tests and we said, 'Yes, please do. And over the next few days they at least noticed episodes of weirdness where she goes sometimes she goes into a world of her own where you can’t even reach her and regresses massively. She was actually strangely malleable and biddable and weird symptoms like she wouldn’t dress up any more in her dressing up clothes. In terms of every day clothes she wouldn’t dress up in pretty dresses, which she’d adored. She was very girly. She would dress in trousers and insist on very plain colours and sort of plain rather tomboyish attire.
And these were all, if you like, weren’t hard medical symptoms but symptomatic of a change. A change that to us of course was massive in our own daughter. Having gone from being a daddy’s girl, she became very anti-me and when it got worse she actually developed what we, without even having consulted websites and good old Google or anything, what we described as autistic symptoms where she would literally go into a corner so she didn’t want to talk to any of us, and detached herself having been again wonderfully interactive with her brother when they played beautifully together. She became detached.
It’s also worth saying that a lot of these symptoms have gradually receded. We’re sort of three and a bit months beyond the jab, probably almost four now. And certainly her base line has climbed in terms of the way her symptoms are a) slightly milder, some of them, but also she seems to overcome them, her core being seems to have returned.
We lost her, straight after the MMR it’s as though the girl that we knew had disappeared and occasionally would reappear. Now it seems to be that this kind of, there’s this core, she’s really fighting hard to be back and that her real self is now fighting symptoms that attach to her, whereas before the symptoms took over and seemed to be her for a while. And so at least we know that. And also it’s worth noting that she doesn’t really have what we described as the autistic spectrum symptoms any more. She relates very well to her brother most of the time, she’s pretty good at the way she relates to us.
First thing in the morning when she has low blood sugar she’s terribly, physically prickly sometimes, and won’t be touched, which is something she never had before. She would just be so cuddly and warm and, and sweet straight away. But some days she’s like that. Her voice has returned, her bowels seem to be a lot better now. The things that we notice was her colour seems to be returning gradually, she doesn’t have that translucent skin any more. Her nappies are quite normal, in fact, and now she’s learning new skills. She lost the ability to count, she lost the ability to recognise colours. So in other words her short-term memory, sometimes her long-term memory about words she should have known like shoes and so on, disappeared. But she’s re-learned how to count, not as well as she did before she fell ill. It seems as though obviously whatever it was, was what they described as relatively mild to us was a massive, massive change and of course we don’t know what damage has been done. We don’t know if it’s permanent or temporary.
The statistic on the NHS’s own leaflet says less than one in one million children could get some kind of encephalopathy. Well, sadly our daughter is this one in one million or less than one in one million, I believe. And indeed you know, the doctor that’s treating us says that he also believes that this is a possibility now.
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