Mumsnet has not checked the qualifications, experience, or professional qualifications of anyone posting on Mumsnet Talk and cannot be held responsible for any advice given on the site. If you have any serious medical concerns, we would urge you to consult your GP.

I have to put in writing that I am taking responsibility for the risk that my baby might die from not vaccination

(315 Posts)

The exact words the nurse spoke!? shock

I'll put something in writing if that is what they want but not that.

Apparently they have a duty to inform the HV of the risks that I am taking and have I heard the recent news oday of all the babies dying?

I'm bloody cross with this nurse tbh.

Deux Fri 30-Nov-12 13:54:59

You don't have to put anything in writing.

You are not compelled to do so.

You could ask her to put in writing that she can categorically state that there will be no adverse effects from vaccinatins, ever .......

havingastress Fri 30-Nov-12 13:57:25

Which vaccinations and why do you not want your baby to have them? hmm Genuinely curious...

Very tempting. Didn't like her attitude tbh but expect she was only doing her job as she is trained to do it, so will probably just write:

'For your file: We have chosen not to continue with the vaccination programme for our 3 children for the time being. Our decision is under constant review and we'll let you know if and when we change our minds.'

Very complicated reasons having and pretty much a different reason for each vaccine. Which is why I didn't take up the nurse's offer of an appointment to chat about it.

MousyMouse Fri 30-Nov-12 14:00:08

I had to do that for the one vaccine my dc didn't have as well.
it's arse covering and making sure the parent made the decision as informed as can be.

My GP asked me to write in so he could get the HA off his back. I sent him quite a long missive (as I misunderstood and thought he wanted me to justify our decision) and he said 'good grief a few lines would have done' grin

So it may be that she is being hassled by the HA. In which case a letter shows them that she's done her job iyswim.

By the way having a hmm sign never gives the impression of genuinity.

LiquidLunch Fri 30-Nov-12 14:00:52

What's made you come to that decision? What's the vaccinations? How olds baby?

Pretty sure you don't have to put anything in writing. Very strange thing to request.

I think that's the sort of thing my GP wanted starlight. Rather than the tome I sent him blush

I don't mind being asked to put it in writing. I DO mind being told I HAVE to put it in writing coupled with a scare story and panicked voice to either frighten me into jabbing my kids for health reasons or simply for authority reasons.

I'd love to see what your wrote. Is it on your blog saintly?

Grrr, she's really rubbed me up the wrong way. Didn't appreciate the long drawn out bit about babies dying everywhere atm from WC.

The last I read was 13, and whilst sad, is a lot more complicated than who is vaccinating or not.

How odd confused

I've never been asked why I've made the choice I have. My HV just said 'Oh ok, well I'll take you off the mailing list if you don't want the appointments, just let me know if you change your mind'.

Its kind of, erm, impertinent of them to insist on having it in writing. They don't demand written consent with reasons from every parent who chooses to vaccinate (do they?).

God no, think it was in the days before blogging grin

Funnily that GP ended up becoming quite anti vaccination shock (we used to -argue discuss it. Then something happened in his life and he seemed to change his attitude towards vaccination a bit, or maybe a lot. He left the practice unfortunately.

VenusRising Fri 30-Nov-12 14:12:54

I think the nurse is just doing her job in Public Health TBH.

The wording, while shockingly blunt is proper order really in my book - I mean you are acting against conventional medical wisdom and also endangering the population by not adhering to the public health programs for disease eradication.

In some ways just saying you are responsible for your own childrens' disease status doesn't go far enough in my very humble opinion.

Now I'm not trolling you or flaming: vaccinations are proved to eradicate public diseases, and they only work if everyone gets them.
And that includes your kids too. If there are medical reasons, such as egg allergy or intolerance, there are controlled conditions where the vaccines may be safely administered. Maybe you do need to talk to the nurse about it.

Of course if you have issues with that, and have just decided not to vaccinate your children, we'll have to agree to disagree. But we have come on most wonderfully in reducing infant mortality with scientific advances such as vaccines, and it's a shame not to use those advances to protect your children, and by doing so, everyone elses' too.

Your very good health!

bellarose2011 Fri 30-Nov-12 14:12:55

ask them to put in writing that if your DC's do have the vaccine they definatly WON"T die.
no ive never been asked anything like this and my kids have had no vaccines (nor have i)
surely just to cover her arse but telling you horror stories is not on.

OpheliasWeepingWillow Fri 30-Nov-12 14:13:41

Well your baby might die if you don't vaccinate. Small chance but that is why the NHS has immunizations. WC kills. Diphtheria kills. Measles kills. At least stand up for your convictions and say yes "I understand the risks. These diseases are life threatening but I opt out of immunization until further notice"

biscuit

Deux Fri 30-Nov-12 14:15:35

I haven't been asked to put anything in writing either and indeed it's never been raised since DCs were infants.

But there was the time I went for a post natal smear and when I was getting dressed the nurse started asking me if baby's vaccinations were up to date. I politely told her I was there for a smear and any discussions about vaccinations would take place with the doctor not now when I was half naked.

bellarose2011 Fri 30-Nov-12 14:16:02

i don't recall the OP asking for a lecture on why she should vaccinate her children.
you really should not advise people to do something that anyone with half a brain knows isn't 100% safe.

OpheliasWeepingWillow Fri 30-Nov-12 14:17:43

Well I don't care if her kids are vaccinated TBH or the OP's reasons but the risk from the disease is a real and present danger. The worst outcome is death and so the nurse = not unreasonable IMO.

missymoomoomee Fri 30-Nov-12 14:18:36

I don't see your problem, your baby may die from not having vaccines, you are obviously aware of this so why not just write the note.

If you want starlight I can ask my friend who is a practice nurse. Her kids are largely unvaccinated so she'll have taken an interest in vaccine refusal and will be aware of what is required and when practices are just being difficult. FWIW I didn't mind giving my GP the letter, as he made it clear that it was just for him to be able to get the HA to stop sending reminders (and indeed I stopped receiving them). It may be that it varies from HA to HA.

Chandon Fri 30-Nov-12 14:19:59

I don't undersand people who do not vaccinate their children.

It baffles me, still I would never want anyone to be forced to do it.

I think the nurse overstepped the mark, maybe you can just write a note saying you have decided nt to vaccinate, without justifying it, but just for their records.

I could not bring myself to write something so biased as 'I understand my child might die or become disabled from not having a jab' unless I included 'and that he also might die or become disabled from a result of having it', which would probably be worse than just 'decided not to, live with it'.

I was asked to confirm in writing that I didn't want the flu jab once. They said it would allow them to give my allocated dose to someone who wanted it but wasn't entitled to it.

mosschops30 Fri 30-Nov-12 14:24:04

Er what is 100% safe:

Crossing the road
Eating out in restaurants
Taking paracetamol
Having a poo
Vaccinations

None of the above, what a stupid argument! We do things every day that arent 100% safe

Yes Chandon That is what I intend to do. I suppose though I'm a leetle bit narked that I am faced with yet another admin task wrt my children that I believe is wholey unnecessary, and even more narked that I was 'threatened' with the HV *who incidently I long ago told to bog off, but that is another story'.

ha ha, yes I see what you mean. I think your earlier 'for you file:' one is fine. If she gets stroppy after that, then I'd get stroppy back.

Pagwatch Fri 30-Nov-12 14:24:54

I was just asked to confirm that I had made an informed decision. Which I did.

I think the manner of her request suggests she is using an administrative necessity to try nd score a cheap point.

AndBingoWasHisNameOh Fri 30-Nov-12 14:25:28

I suspect she says it as a way of making parents stop and think about their decision. The OP may have thought it through carefully but not everyone who doesn't turn up for the jabs has.

MissCellania Fri 30-Nov-12 14:26:10

You could write that, and also that the risk of death or disablement from the diseases is a higher chance, and the link is unquestionable. Thats not biased, thats fact.

Ah you told her to bog off. I argree with Pagwatch, she's point scoring. Just provide the 'for your file' one and if it isn't enough then start writing long tomes.

That's bollocks mrsbugs.

I never had my flu jab and wasn't offered it either, but then I move PCT twice throughout my pregnancy.

Well, that's true at a population level MissCellania but isn't actually necessarily true at an individual level, but hey ho.

If you are in England you are under no such obligation to write any letter to your GP. A lot of GPs and practice nurses seem to be under the mistaken opinion that you do have to. Ignore, or just ask them if they can't get simple facts straight how are you supposed to trust them for bigger things?

GalaxyDisaster Fri 30-Nov-12 14:32:10

Don't want to get into the 'vaccinate or not vaccinate' debate. But personally I did, and just to QueenofFarking certainly in my area they do ask you to put it in writing that you are vaccinating, in a way. You have to sign a form with a list of the vaccinations, what they protect against, the common side effects, etc.

That isn't reasons for vaccinating, but actually Starlight wasn't asked to give reasons for not vaccinating either. Not that I agree with the way she was asked, but I think the principle is reasonable - I think it is important for staff to be able to check who has made an informed decision not to vaccinate and who might have just missed the reminder/have personal circumstances which make completing the programme less likely. I suppose they could have a 'I don't want to vaccinate' form instead though, but there are probably so many permutations of what people do and don't want it might be easier to get them to write a note.

ILikeToMoveItMoveIt Fri 30-Nov-12 14:33:58

I think I would have found it difficult to not tell her to 'fuck off' tbh.

What an utterly stupid and shitty thing for her to say. It makes no sense on so many levels.

I would not provide anything in writing apart from my feelings on why they should go forth and multiply.

Sorry for being ranty, but I feel really quite cross for you.

missymoomoomee Fri 30-Nov-12 14:34:21

You have to sign a consent form if your child has the vaccinations that says you are aware of the possible risks, this is just the same. If you say the note she asked you to write is biased then so is the consent form. I assume they just want proof that you are aware of the dangers.

DystopianReality Fri 30-Nov-12 14:35:19

bellarose Of course you can advixe someone to do something that isn't 100% safe. If the benefit outweighs the risk and there are proven benefits to the poulation then you can advise that.

What IS 100% safe, I'd like to know.

I am a practice nurse and the reason why written consent was asked for was for the HPA and local H/A. Otherwise both the surgery and the healthcare recipients will get reminders and nags.

I don't agree with the alarmist approach the nurse used, but you have to agree that an unimmunised infant is more vulnerbale to preventable contagious disease than an immunised one.

We ask for written 'de-consent' to opt out of the cervical screening programme too.

Badvocsanta Fri 30-Nov-12 14:35:33

You do not have to do this star.
Ignore.

starlight I wasn't pregnant then, I am entitled to it due to being asthmatic. It may be bollocks but it was what the nurse told me.

Now I am pregnant I made sure I got the jab, as I am less willing to gamble with my baby's health than when it was just me!

Bad I have had consequences before from 'disagreeing with professional opinion', and whilst then, like now, I was in the right, which was ultimately proven, the journey was horrendous.

Which is why I will write the note.

Funily enough, I quite like the postal reminders, because it keeps the topic in my mind and continually reviewed. I 'actively' ignore the reminders iyswim, and have to revisit why I am making the decisions I am.

I've got 2 DC and have lived in 4 different PCTs (or whatever they are called), and have never been asked to sign or write anything to that effect.

Maybe in some areas they ask you to, but you don't have to. Its not a legal requirement.

I don't think anyone wants to gamble with their baby's health mrsbugs

I don't mind revisiting the question but 'be wise immunise' coming through my door just about did me in (how much was someone paid to come up with that patronising bit of tosh)

I guess 3 children is a high percentage that affects GP's stats.

GalaxyDisaster Fri 30-Nov-12 14:42:53

Queen - Sorry, bit confused, do you mean you have vaccinated and haven't been asked to sign a form, or that you haven't and have never been asked?

I know Queen and believe me I'm pretty robust when coming to things being done properly and not allowing bollocks to be spouted, but refusing to write this letter, however much my right not to, - it is being a bit contrary isn't it!?

My DC are unvaccinated.

I have never been asked to sign or write anything on the subject, in any of the 4 different areas that I've lived in and had HV involvement in.

If I was asked to, I probably would btw, but it would only be simple confirmation that I was making an informed decision.

For those of you wondering, as I mentioned before, I have different reasons for the different vaccinations and the sitution is complex.

But here is one to illustrate:

My DB suffered a rare form renal failure as a child from an immune response. I was genetically tested for compatability for an emergency kidney transplant and found to carry the gene responsible. My children have not been tested.

My DB's Consultant was unclear as to the exact cause of my DB's renal failure, but that the research at that time suggested a likeliness of being one or two causes (or both together). These were the DTP, and/or having had measles recently.

Now no-one will test my children for the renal failure predisposition gene (if that is actually what it was they found - no idea, I was 7) and nobody will give me any information that I can understand on latest developments on my DB's issues.

None of this means the DTP will harm my children of course, but so what? It doesn't mean it won't.

FushiaFernica Fri 30-Nov-12 15:02:31

Make a complaint about the nurse, her wording is apalling. No parent should be forced to vaccinate their child.

GalaxyDisaster Fri 30-Nov-12 15:02:41

Ah, I see Queen, I wasn't sure if you were responding to me saying you did need to put it in writing if you were agreeing to vaccination (at least in my area).

Starlight - the nurse sounds horrid, but I agree with you, I would just put the 'for your file' wording you suggested.

LadyIsabellaWrotham Belgium Fri 30-Nov-12 15:18:25

I'm with Bingo, I think that putting it in writing is important to distinguish people like the OP, who has reasonable grounds for suspecting that her DCs' vulnerability to an adverse reaction is higher than average, from the kneejerk "woo, chemicals bad" brigade, (including the ones who will choose "homeopathic safe alternatives"), and the "needles are painful" mums.

There are a small but significant number of parents who, when asked to say "I accept that if I decline vaccination my child may catch an actual disease which is sometimes fatal" will say "errm, actually I've changed my mind". The ones who've thought it through should be prepared to sign up to it, and then have their decision accepted. None of us want to gamble with our DCs' health but on this issue we have no choice; we have to pick red or black and place our bets one way or another.

Congratulations on your admirably rational stance about revisiting your decision when you get a reminder OP - you never know when a new test might be available. It sounds patronising to praise someone for rationality, I'm sorry, but it's in pretty short supply these days do I think it needs a round of applause whenever spotted in the wild.

OneMoreChap Fri 30-Nov-12 16:00:08

I don't think anyone should have to vaccinate their children. At all.
Mostly, I think they are pretty damn foolish if they don't do do so and stuff like

bellarose2011
you really should not advise people to do something that anyone with half a brain knows isn't 100% safe makes me wonder where catching mumps, measles, infecting some poor pregnant random with rubella, polio comes in with all that.

I realise there'll be some whiny arse "Well, I'm not vaccinating PFB because all you lesser folk have so there's herd immunity" and I'd liken that to the idiots who think Wakefield was right and yes, there's a proven link to Autism.

I just think if you choose not to vaccinate, you shouldn't be admitted to public services, like schools, buses, trains...

naughtymummy Fri 30-Nov-12 16:18:43

Starlight surely your GP can access your file, to check which test they did age 7 ? I can't understand why they wouldn't' agree to test your dcs.

Whooping cough is horrible and can leave infants with a lifelong weak chest if not fatal.

Presumably you realize these diseases are serious and can be rarely fatal. So why is it a problem to put that in a letter ? (Confused)

Deux Fri 30-Nov-12 16:35:21

Starlight, have you discussed it with your GP?

Reason I ask is that I wasn't asked to sign anything about (currently) declining vaccinations but my GP did take a detailed family history and he did write it up on DCs notes.

FWIW, he agreed my stance was 'sensible given the circumstances'.

A bit like you with your brother, no one has been able to tell us exactly why my sister was left brain damaged after whooping cough vaccine. And the fear is too great for me.

Oh, and my lovely GP did offer me single vaccines if I wanted and that his door was always open.

So maybe that's why I've never been harassed or harangued about it. Can you speak to your GP?

Badvocsanta Fri 30-Nov-12 16:48:40

Star...as you know I am very pro vaccination and both my dc are.
But you have very valid reasons not too and surely the nurse knows that??
There are valid reasons not to vaccinate and a hcp should be aware if this.
Some children do get damaged by vaccines but I chose to weigh up that against the benefits.
For me the benefits outweighed the possible dangers.
Wrt to WC..I wasnt immunised (there was some sort of scare about the vaccine in the early 1970s...sound familiar??) and I nearly died of it when I was 12 months old. My aunt still goes pale whenever it is mentioned.
These illnesses are a very real threat to countless children and babies but you know that.
You are making the best decision you can wrt yur children.
IMO the reason there is an outbreak of WC ATM (there was another in 2008) is that the bacteria has mutated.
And the WC vaccine does nt confer lifelong immunity.

Lougle Fri 30-Nov-12 16:49:26

"Presumably you realize these diseases are serious and can be rarely fatal. So why is it a problem to put that in a letter ? (Confused) "

There's a big difference between knowing the risks of leaving your child unvaccinated and stating 'I know my child could die because of my choice.', which is what Starlight has been asked to do.

A more neutral 'I have been appraised of the risks and benefits of the vaccination programme and at this time do not wish to participate. In the future, if I change my mind I will contact the surgery, but until that time I do not wish to be sent further reminders.' should suffice.

naughtymummy Fri 30-Nov-12 16:55:56

Yes Louglee. I think the nurse was being alarmist.

naughtymummy Fri 30-Nov-12 16:58:12

May be she had just transferred an uniimmunized child to hospital with WC.

LadyIsabellaWrotham Belgium Fri 30-Nov-12 17:10:21

I don't think a letter like you proposed would really make the kneejerkers think Lougle. It's too abstract, too much like something you sign on a mobile phone contract without reading it. We all need to understand that the risks are real either way.

naughty There is nothing on my file about the test. I was 7 so don't remember the details but at a guess my test was not for my benefit. It was done at the Royal Machester Children's hospital for the purpose of being able to call on me at a moments notices for my kidney, although it was pointed out that they would not consider me until I was both and adult and had completed my family.

I had the test because I was 7 and my mum told me to. The genetic information came from my DM agreeing they could use my blood for sibling research (as the condition is rare) so again, not for my benefit. The information was given verbally and not with any serious concern iirc, just that we all (all siblings) have very similar genetic patterns.

DB and I have never shared the same PCT.

I spoke briefly to my GP about it at the 6 week checkup when she raised the vaccination thing (because she was confused I was there at 6 weeks as they like to do the 6 week check at 8 weeks and combine with first vaccs) and gave the name of DB's disease which she admitted she'd never heard of, and wrote down to look up but I haven't seen her since (I don't go to the GP very often). She offered me an appointment with the vacc nurse but conceded that she wouldn't be able to help me with my fears about my DB's disease, and considered it unncessary to investigate me or the children wrt it.

So we kind of left it as that.

Maybe she'd just transferred an immunised child to hospital with WC. Pertussis really isn't a good example to use to prove the point you're trying to prove as it is pretty much agreed that for whatever reason the current outbreak has been triggered by the vaccination not providing immunity at population level in the way in which it was expected to (and indeed used to).

Now whilst that isn't necessarily an argument for refusing pertussis jab it does alter the risk - benefit ratio somewhat.

naughtymummy Fri 30-Nov-12 17:20:37

I see if research then possibly not. Any tests done are copied in to GP s and medical records should be lifelong.

Personally I wouldn't' withhold a potentially life saving vaccination from children with out knowing the details, but I do accept everyone is different. FWIW medical genetics has exploded as a field in the last decade. Chances are the tests are now far more routine.

naughtymummy Fri 30-Nov-12 17:21:43

Are your Dm or db still around to get details from.

Yes. I had both the vaccine and WC. Same goes for measles and rubella and mumps for that matter which also makes me concerned about immune issues for my family.

naughtymummy Fri 30-Nov-12 17:23:42

I accept that. All the cases that I have seen have been immunized babies.

'Any tests done are copied in to GP s and medical records should be lifelong.'

You'd think. But I appear to have 2 nhs numbers to add to the mix, and one of them has me down as male. No-one seems to be able to do anything about it, - but that is a whole other thread............

yes. DB not interested in talking about it. Pretends there is nothing wrong with him, especially right now as newly married and transplanted kidney just beginning to fail. DM doesn't think she has any right to share DBs issues without consent, although I think she's forgotten most of it anyway.

Deux Fri 30-Nov-12 17:29:36

I had WC vaccine but still got WC too.

naughtymummy Fri 30-Nov-12 17:29:48

That does seem unusual. I think for measles about 10% occurs in immunized people.

My Ds is immunized and had a cough thing recently which I thought might have been pertussis. However because he is 8 and/or immunized he got over it quickly.

naughtymummy Fri 30-Nov-12 17:32:23

Out of interest how old were you ? The immunity only lasts 5-10 years apparently.

naughty I have additional grounds for witholding vaccinations atm and without the db thing may still have chosen to to vaccinate at this time.

fwiw, I am not anti-vaccine per se. but I don't think on an individual level things are straightforward.

However, on a population level no-one has been able to show me any research that shows me what changes in a newborn between 1 and 2 months that makes vaccs safe in the latter but not former, or why the dosage is the same even if you delayed it for a few years and have a bigger body to put it in.

I think I was about 8 or 9. Believe me I don't think it would be good for my children to get it. It's horrible.

naughtymummy Fri 30-Nov-12 17:35:10

I am sorry starlight that sucks

naughtymummy Fri 30-Nov-12 17:38:31

That was about accessing your medical records. Although I sure WC was horrible.

ArthurPewty Fri 30-Nov-12 17:39:45

I was never asked to write anything down. Our GPs simply noted that we do not vaccinate any of our children and that was the end of the discussion.

No one has ever brought it up again since, either.

i got measles on a camping trip in August accompanying my parents who had taken a group of EBD kids away. The GP told my mum to keep my eyes out of sunlight in case i went blind hmm. I spent a week confined to a hot tent scratching my skin off. Also nasty.

Thank you Badvoc. I think I just get riled by jobsworth professinonals throwing their weight about. I've had more than my fair share and well, just grrrrrrrr

Lougle Yes. Thank you. Just a quick note is probably sensible regardless of whether I am obliged to or not.

Badvocsanta Fri 30-Nov-12 18:02:17

Yeah. I get that. Honestly.
Just write a quick note.
Bare minimum of info.
It is the sensible thing to do, you are right.
But I don't always feel sensible smile

silverfrog Fri 30-Nov-12 18:05:07

I've never been asked to confirm anything in writing either - that's 3 different children and 4 different PCTs.

All accept (usually with a hmm) my reasoning without further questioning.

JoTheHot Fri 30-Nov-12 18:16:10

StarlightMcKenzie Do you have a link to the research on measles and DTP causing autoimmune renal failure? I've had a look on google scholar without any luck.

ArthurPewty Fri 30-Nov-12 18:16:56

oh yeah, i get the hmm look but i ignore it grin

No Jo I haven't. I looked once a couple of years ago and because I knew what I was looking for found something on it but haven't looked since. I wouldn't really know what I was looking for to be honest or how many links there might be in the chain to lead the consultants to conclude what they did.

It is reasonable that u have to put in writing that you are willing to allow your children to catch life threatening diseases when their is a perfectly safe vaccine available to prevent it. This will also then cost the NHS and therefore us loads of money to try and treat them and keep them alive!! angry

ArthurPewty Fri 30-Nov-12 18:28:09

that you are willing to allow your children to catch life threatening diseases when their is a perfectly safe vaccine available to prevent it.

hmm
biscuit

'This will also then cost the NHS and therefore us loads of money to try and treat them'

Forgetting your first ignorant statement, do you really think this is what will happen? Because I can tell you you are very much mistaken. I have a child already damaged due to medical negligence and all we get is justifications for why we should live in poverty without support.

Lougle Fri 30-Nov-12 18:39:34

First google came up with these, mostly foreign, articles.
Jacquot, C et al, "Renal Risk in Vaccination", Nouv Presse Med, Nov 6, 1982, 11(44):3237-3238.
Giudicelli, et al, "Renal Risk in Vaccination", Presse Med, Jun 11, 1982, 12(25):1587-1590.
Tan, SY, et al, "Vaccine Related Glomerulonephritis", BMJ, Jan 23, 1993, 306(6872):248.
Pillai, JJ, et al, "Renal Involvement in Association with Post-vaccination Varicella", Clin Infect Disorder, Dec 1993, 17(6): 1079-1080.
Eisinger, AJ et al, "Acute Renal Failure after TAB and Cholera Vaccination", B Med J, Feb 10, 1979, 1(6160):381-382.
Silina, ZM, et al, "Causes of Postvaccinal Complications in the Kidneys in Young Infants", Pediatria, Dec 1978, (12):59-61.
Na, "Albuminurias", Concours Med, Mar 1964, 85:5095-5098. [vaccination adverse reactions]
Oyrl, A, et al, "Can Vaccinations Harm the Kidney?", Clin Nephrol, 1975, 3(5):204-205.
Mel'man Nia, "[Renal lesions after use of vaccines and sera]." Vrach Delo 1978 Oct;(10):67-9, [Article in Russian]
Silina ZM, Galaktionova TIa, Shabunina NR, "[Causes of postvaccinal complications in the kidneys in young infants]." Pediatriia 1978 Dec;(12):59-61, [Article in Russian]
Silina EM, et al, "[Some diseases of the kidneys in children during the 1st year of life, following primary smallpox vaccination and administration of pertusis-diphtheria-tetanus vaccine]." Vopr Okhr Materin Det 1968 Mar; 13(3):79-80, [Article in Russian]

www.ncbi.nlm.nih.gov/pmc/articles/PMC1676761/

Jo, Don't understand a word of the above but it shows that it's within the realms of research that vaccines can cause renal failure.

edam Fri 30-Nov-12 18:41:09

I guess the message is aimed at ill-informed people who haven't researched their decision properly, not well-informed people who have good reasons not to vaccinate, such as Starlight and Jimjams.

Sadly 13 infants have died so far this year from whooping cough. I imagine none of them had been vaccinated, as they were too young, which is why the NHS is now offering whooping cough vaccine to pregnant women. Vaccines never come with 100% guarantees for everyone that they work perfectly - no medicine does. But if you are pregnant and have no contra-indications or have a baby and no reason for concern about the vaccine, it would probably be in your/ his or her best interests to have it.

Lougle beat me to it!

And LOL because iirc that was exactly why she got her name.

grin

Although, they are quite old. I'm sure I once saw something more recent on a renal failure support website, but who knows.

Lougle Fri 30-Nov-12 18:43:57

It's surprisingly hard to find any balanced websites with information. They seem to be mostly 'pro' or 'anti'.

VivaLeBeaver Fri 30-Nov-12 18:44:20

I read somewhere that the single most important thing that parents can do for their child's health is to breastfeed. That the benefits of breastfeeding are higher than the benefits of vaccination.

Suprised that bottle feeding mums don't have to sign a disclaimer!

Such disclaimers aren't worth the paper they're written on and are pointless. The nurse simply needs to document that she has discussed benefits and risks of vaccinations with you and you've declined. And detail exactly what risks are. That covers her arse.

Or maybe no-one is allowed to publish anti-vacc publications? in case they get struck off?

just an idea........

Ah well, DS (5months) is currently bfing this second (and has been all day) and has had nothing but milk direct from breast since he was born. Should I include that in my letter?

ArthurPewty Fri 30-Nov-12 18:48:03

be proud of it. I am, of mine.

edam Fri 30-Nov-12 18:48:27

for Lougle You can't get much better reviews of all the evidence than the Cochrane Collaboration. Sadly this abstract doesn't go into detail about adverse events, but if there had been a serious or widespread problem, it would have been flagged up.

Searching for 'balanced' websites is probably a fool's errand because any reputable medical site is going to give the actual evidence, which will be strongly in favour of vaccination - for almost all people barring those who have real cause for concern such as Jimjams and Starlight.

edam Fri 30-Nov-12 18:50:31

DTB is just as reliable and expert as Cochrane but sadly you have to pay to get the paper.

Oooh, this is interesting

You know what. I might just print off the links for my letter. No-one will be bothered to read them I bet.

edam Fri 30-Nov-12 18:54:37

That's worrying, Starlight. Although at population level vaccination is still better than not vaccinating - depending on the vaccine, of course, I think the flu pandemic one turned out to be far less effective than the manufacturers had claimed IIRC.

JoTheHot Fri 30-Nov-12 18:57:43

Where did you find that list Lougle?

edam I don't disagree with you, but I would still have some concerns for my family on the back of what happened to my DB. I also think that it our GP would probably prefer for us to forego the vaccines than pay for any tests that would highlight risk, if such tests even exist.

Although I sometimes wonder what would have happened had we vaccinated against and irradicated cowpox before the smallpox vaccination was developed.

Interestingly though, having had a kidney transplant, DB is always advised to have the flu jab.

See, I SAID it was all complicated.

ArthurPewty Fri 30-Nov-12 19:11:59

They recommend all sorts of people have the flu jab - some who perhaps shouldn't...

VivaLeBeaver Fri 30-Nov-12 19:13:07

My dd is 11 and was due her MMR at the height of all the media hoohar about it. She didn't have it.

I remember at the time reading on the JABS website about some cases where the government had paid out compensation to families of children who had been affected by the MMR.

Now I know JABS are probably a bit biased, but there were proper links to these cases, interviews, etc. I don't think they were made up. Can't remember exactly how the kids involved had been affected but it was serious, permanent stuff iirc.

VivaLeBeaver Fri 30-Nov-12 19:14:14

2 second google and I found this;

www.bbc.co.uk/news/uk-england-merseyside-11125343

I do get that such events are rare but they do happen.

expatinscotland Fri 30-Nov-12 19:15:20

'I read somewhere that the single most important thing that parents can do for their child's health is to breastfeed. That the benefits of breastfeeding are higher than the benefits of vaccination.'

That's why so many in the past and present, who were breastfed, still got polio, whooping cough, tetanus, diphtheria, etc. It's important, but it's not a substitute for vaccination.

My dad was breastfed till the age of 2. He still got whooping cough, measles, mumps, diphtheria, etc etc as a child. They lived in mortal dread of polio before the vaccine was developed.

Lougle Fri 30-Nov-12 19:16:54

I found it here but given that the site is 'think twice' I think we can safely say they are anti grin

That's interesting about medical records being lifelong - I always assumed they were too, until I recently asked my GP about something that I had as a baby (which I wanted to know if was genetic). It turns out they have no idea as my medical records only go back until sometime in the 1980's, when they were computerised.

VivaLeBeaver Fri 30-Nov-12 19:23:43

No, I'm not suggesting that breast feeding is a substitute for vaccinations at all. smile

But not doing either of them has its own risks. So I'm just saying its silly to make people not doing one of those things sign a disclaimer if you're not also going to make the other group sign a disclaimer.

Just playing devil's advocate as I don't actually think that either group should sign a disclaimer.

But there is research that states that if you have a bottle fed child and an unvaccinated child then in the UK, with a healthy child the biggest risk to that child is due to being bottle fed rather than been unvaccinated. Quite possibly due to herd immunity meaning that their chances of catching mumps, etc is low and if they do catch it then the chances of them not been seriously ill are good.

And of course with bottle feeding there are the million and one things such as asthma, excema, obesity that are now thought to have the risk of occurance raised by bottle feeding.

I think I read a daft paper somewhere that suggested breastfeeding was harmful to the vaccine programme as it didn't allow the live viruses to do their thing.

Wonder if I can find it?

www.ncbi.nlm.nih.gov/pubmed/20442687

It might have been this.

Ah yes, one of the recommendations was to delay breastfeeding until after the vaccinations had been given. Not sure if they mean don't bf at all, or whether they mean don't bf within a few hours of jabbing!?

The disgrace in the Fletcher case is a) the paltry sum b) the length of time they had to wait for payment and c) the abuse and ridicule that Jackie Fletcher has had to endure over the years.

Vaccinate your child, watch them become damaged then get ridiculed for years. Nice.

If your child dies from a vaccination no compensation is payable unless they die after the age of 2. Now while I assume compensation is neither here nor there if you have lost a child, I don't understand the reasoning behind paying out if you child is older than 2, but not under.

Starlight that is true of any passive immunity. It's why the measles shot works slightly better with increasing age (and why it doesn't work that well under the age of 12 months) - passive immunity from the mother before then (assuming she has the immunity to pass on - until mass vaccination she almost certainly would have been immune) interfered with the immune response, so immunity does not last very long.

Interestingly when ds2 (unvaccinated) was exposed to whooping cough at 10 weeks of age 10 years ago everything I read said that w/c immunity wasn't passed from mother to baby. But he didn't catch it and I think recent papers have suggested that some does pass. I definitely found a paper showing it passed in piglets! I presume it does otherwise I guess they wouldn't be vaccinating mothers now.

I do also wonder whether measles shot should be given at 18 months rather than 12 months (as it used to be not that long ago).

Time will tell I guess.

JoTheHot Fri 30-Nov-12 20:04:03

"No, I'm not suggesting that breast feeding is a substitute for vaccinations at all."...you might not be, but think twice are, along with ....whole foods, and ......homeopathy. All that and publishing lists of papers which they haven't read, and which don't support their crazed agenda.

How did you estimate the increased risk of membranous glomerulonephritis in your children starlight, and thereafter that it outweighed the benefits of vaccination?

'How did you estimate the increased risk of membranous glomerulonephritis in your children starlight, and thereafter that it outweighed the benefits of vaccination?'

Interesting question. I asked the GP. She didn't know. She didn't want to pay to find out so I will have to be anetdotal. Member of family had vaccine = member of family terminally ill. Member of family had diseases = member of family miserable but not dead, nor vaccinated for that matter.

Breastfeeding and homeopathy should not be put in the same camp though.

Clumsasaurus Fri 30-Nov-12 21:00:53

I have read this thread with huge interest. My DS had his first vacs at 9 weeks (Dr was on hols at 8 weeks - I love the implied hypocrisy in that alone!) However he had a bad reaction to the jabs and was unwell for 2 weeks+ and only in the last couple of weeks us he getting back to himself.

Some will say it was a developmental spurt, others a virus and others coincidence but all I know is I took a healthy happy boy in and got a screaming, unsettled, feverish, uninterested, glazed little boy back. I personally have faith in some alternative therapies and used cranial osteopathy and homeopathy (placebo or not I'm not here to debate but I was desperate to help him and it appeared to have some effect but I understand for many it is hogwash and I am on the fence).

We are now in a position we didn't foresee as to where to go from here. At times I just think we should push on and vaccinate and at other times I fear what could happen if we did. I'm trying to research but as said above there is either camp pro or camp anti and nothing in between and all I got from the GP and HV was the expected party line of 'you must'.

If anyone can point me in the direction of any research on either side, please do, just no 'be wise, immunise'! Please! I know the risks not to also especially with WC so please no lectures. I am particularly interested in research showing percentage protection from 1, 2 or 3 doses if 5in1. I know for expanded Sweden only do 5in1 twice which they feel us sufficient for 80+% protection and many countries suggest 8 weeks between jabs rather than NICE's 4 weeks but I'm interested to read more.

Clumsasaurus Fri 30-Nov-12 21:03:13

Expanded = example! iPhone autocorrect at its best!

I'm glad your little boy is getting better Culmsasaurus.

I think you'll struggle to find what you're looking for because in a way no-one is going to know which would be the 'best' course. I had reasons to be wary of jabs for ds2 and ds3 (having happily taken ds1 for all of his at the earliest possible age). Probably the most sensible thing any doctor said to me was 'if you vaccinate he'll probably be fine, if you don't vaccinate he'll probably be fine', so I decided to delay (not just based on that!)

And we've delayed and delayed. DS2 is 10 now, and there a couple of jabs I would give him if I could get them without having to give every other bloody jab at the same time :rolls eyes: DS3 I am much much more wary about vaccinating at all as he share many of what I now consider were red flags with ds1.

If we ever do vaccinate ds2, or if ds2 or ds3 decide they want to be vaccinated we will (or I will advise them to) be certain they are in full health before proceeding. And I would allow as much time as possible after an illness.

In our case I read as many peer reviewed papers as I could lay my hands on. In the end it was largely the blatant misrepresentation of some of those by the dept of health that put me off hmm or at least made me very wary. I did manage to find some sensible doctors at various times and was able to have sensible discussions, but it is hard finding ones who have enough knowledge of potential difficulties.

It's a decision we revisit fairly frequently, still.

bellarose2011 Fri 30-Nov-12 21:35:46

CLUMSASAURAS PM ME PLEASE!!

edam Fri 30-Nov-12 22:45:59

Second Jimjam's comments about the Dept of Health deliberately mis-representing the research on immunisation during the MMR scare. It was an appalling dirty tricks campaign. They were desperate to convince parents MMR was safe but sadly resorted to the worst excesses of PR spin rather than accurately conveying the evidence.

Nick Hornby summarised it rather beautifully in 2002 as: "To paraphrase Jeremy Paxman: if the triple vaccine is safe (and I reiterate - it might be), then why are these bastards lying to us?"

sashh Sat 01-Dec-12 08:14:57

OP.

It's probably because we are experiencing an epidemic. Yes 'only' 13 babies have died but there have been about 8000 cases.

Obviously only a minority dies, and another minority need treatment in hospital.

Sure sash, but those figures have absolutely nothing to do with vaccination.

ArthurPewty Sat 01-Dec-12 09:39:13

spot on, Star.

Anyway, - my situation is further complicated by a DH who doesn't see things the same way as me, so I suspect we'll be reviewing our decision in the summer when my baby is coming up for a year.

We go camping a LOT and have some concerns about not being protected against tetanus, which you can't easily get on its own.

naughtymummy Sat 01-Dec-12 10:39:53

Starlight predisposition to auto-immune conditions is hereditary. HLA phenotypes
can be tested for. But your db would also need to be tested. (Sounds like he wouldn't' agree atm).

I am increassingly saddened by the GP s making these short term financial decisions often to the dedetriment of patients health and arguably as importantly their information about their own health.

ArthurPewty Sat 01-Dec-12 10:51:27

You cant easily get tetanus either, Starlight.

My 100% unvaccinated children work the allotments each year - and deal with chicken manure and dirt and glass and all sorts - and we just get on with it!

shadylane Sat 01-Dec-12 11:00:47

The problem is that if you choose not to vaccinate you are vindicated and made to feel as though you are some kind of witch parent, as opposed to someone who has clearly thought about what they consider to e best for their child. It is not the law to have vaccinations but it certainly feels like you are bein judged when you don't have one. Only taken my 2 year old DS to the doctor a couple of times, luckily for minor things, but every time they managed to focus on the fact he hasn't had vaccinations rather than what I had actually brought him in for. Can I add he is less ill less often than all his peers. It is a personal choice and people should not have to justify their educated decisions.

naughtymummy Sat 01-Dec-12 11:11:00

Well shadylane, personally having two fit , healthy children with no contraindications to vaccination. I feel it is my social duty to immunize theme

.Plenty of dcs can't be immunized for all sorts of reasons and getting measles (for example) from my child could literally kill them.I don't immunize my dcs to protect them, I do it to protect those more vulnerable.

naughtymummy Sat 01-Dec-12 11:14:25

That is the reason I have the flu jab every year. To protect my patients not me.

Pagwatch Sat 01-Dec-12 11:17:41

See, I don't actually believe that.
I don't believe that anyone would vaccinate only to protect other children.
I think it is a truly admirable thing to factor in. But I simply don't believe it is ever the only reaon.
If you post 'I don't immunise simply to protect them but also to protect the less vulnerable' I would heartily agree.
But I don't think people rationally would put their child through the discomfort of vaccination if it made absoloutely no difference to their child or to vulnerable family members, especially with the possibility of bad reactions.

Pagwatch Sat 01-Dec-12 11:18:22

more vulnerable..

naughtymummy Sat 01-Dec-12 11:24:29

No when they were 8 weeks old I didn't want them to get pettusis. However rubella and mumps are fairly mild illnesses (and dd didn't react brilliantly to the MMR) but have serious implications for certain groups so we need to keep herd immunity up.

I realize that having seen congenital rubella I have a better understanding than some of how devastating it can be.

So I was prepared to put them both through a few days of discomfort to protect others.

Pagwatch Sat 01-Dec-12 11:30:47

Yes, but to get measles alone is not straightforward so the MMR is not a radical wholly selfless choice is it?

I am not dismissing the altruistic element of your choice. I just remain unconvinced that you would, for example, actively seek out a separate mumps injection were it not part of the MMR simply to protect passers by. It doesn't quite seem realistic to me.

Having watched DS2 have a catastrophic reaction to his jab I thinki would have felt as if I had let him down if my only reason for vaccinating him had been civic duty. Knowing I was simply trying to protect him along with society at large is probably easier.

ArthurPewty Sat 01-Dec-12 11:42:50

i selfishly choose not to vaccinate my children because of the very real risk of reactions - huge nasty family history of autoimmune diseases.

So it is my very nasty selfish choice not to subject them to the parent/doctor chosen and administered risk of developing a nasty reaction, because basically, all those people who want me to vaccinate to protect other children won't be queueing up to help me take care of my kids, to wipe their bums and clean their dribble and roll them over in bed, right?

I gotta look after my own, first and foremost. So altruism is nice, but the risk is not worth it to my children. I love them too much to risk their brains to protect other people or their children. And that's how it will be until the government reintriduce the singles so we can vaccinate singly, one at a time, and for the diseases WE want, not what the government mandate with no respect or care for the risks and damages they cause.

tbh I'm a bit pissed off with how 'society' has treated my family and disabled son. My 'duty' to protect them at the potential expense of my children and likely subsequent inhumane treatment if anything were to happen to them is not something I have much sympathy with.

xpost with Leonie

shadylane Sat 01-Dec-12 11:48:29

Naughty mummy- it wasn't an easy decision and I have doubts often enough, I was just saying it incidentally. And I fully understand why people might choose to vaccinate for many reasons. But I also don't think my decision should be questioned at every turn. The fact is we decided, we didn't just ignore all advice. Doctors have treated me as though I'm some whacky hippy who is somehow negligent. A nurse actually got hysterical and shouted at me saying I was irresponsible!

zzzzz Sat 01-Dec-12 12:13:19

Well I have a mixture of vaccinated, unvaccinated, and partially vaccinated. I think the nurse was being unpleasant, and certainly using admin and HV as a weapon. She provides a service and shouldn't b pushing anyone to do anything. angry

Personally I would have got out an old envelope (possibley slightly sticky), scrawled "XXXX doesn't require vaccination" signed and handed it over.

I do not respond well to "have to" type proouncements, especially regarding my children.

JoTheHot Sat 01-Dec-12 12:51:15

Whilst the nurse was taking advantage of the situation to make her point forcibly, this does not negate the fact that the wording is an effective way of verifying the parent really has thought about what they are doing. If someone does not wish to acknowledge the risks they are taking, it suggests they do not fully accept them.

People on this thread are linking family histories of autoimmune disease with vaccine damage as though such a link were proven, when in truth such a link is highly speculative, and if true at all, is likely extremely rare. These people either know the link is unlikely and unproven, and so are misrepresenting the evidence, or they believe it is proven, in which case their decisions not to vaccinate are not fully informed.

...and grin at non-vaccinators being vindicated

ArthurPewty Sat 01-Dec-12 12:54:05

[eyeroll] biscuit

naughtymummy Sat 01-Dec-12 13:03:52

As I said in my post there are plenty of children who shouldn't be vaccinated. I have no issue with people deciding on the balance of risks it's not worth it.

This is isn't the case for some people who just don't want to vaccinate.

Pagwatch Sat 01-Dec-12 13:23:04

Message deleted by Mumsnet for breaking our Talk Guidelines. Replies may also be deleted.

naughtymummy Sat 01-Dec-12 13:27:45

Sorry ?

Pagwatch Sat 01-Dec-12 13:29:22

Message deleted by Mumsnet for breaking our Talk Guidelines. Replies may also be deleted.

naughtymummy Sat 01-Dec-12 13:32:54

Starlight I am sorry that you feel society has not been kind to you and your family. I doubt it was the child with leukemia to blame though.

naughty, you're right to bring it back to the individual from 'society', and I am too.

naughtymummy Sat 01-Dec-12 13:37:39

And pagwatch I would say that giving mine the preschool booster was altruistic. By then they were healthy 3/4 year olds who probably could have seen off measles. Buta at school they could be children who needed protecting so I gave them the jab.

Pagwatch Sat 01-Dec-12 13:44:16

Still not really sure about that naughtymummy.
Will you be giving it again when they are teenagers - begore uni when lots of boys sem still to be getting mumps - Just in case they are potential carriers again.
Chicken pox vaccine - that is available and soe can be very vulnerable to chicken pox?

I suspect I seem argumentative and I am not trying to be. I just kind of hope that you don't give your children what you consider to be totally pointless vaccines just to possibly help strangers.
It would show an indifference to the health and comfort your DC that I would find just a little odd.

naughtymummy Sat 01-Dec-12 13:47:42

Leonie you do know that measles can cause brain damage too, sometimes years later ? Polio causes disability as well? (Not that I have ever seen a case)

naughtymummy Sat 01-Dec-12 13:51:50

Well yes they will have vaccines again as teens (we have already discussed the importance of herd immunity with them) though by then if they refused I would respect that.

I think it depends on your perception of risk of vaccination TBH. My understanding is that mild reaction s are fairly common and serious reactions are incredibly rare.

naughtymummy Sat 01-Dec-12 13:52:49

I would vaccinate against varicella and rotavirus as well TBH.

Of course. Immune response to exposure to or contracting diseases also carries risks.

naughtymummy Sat 01-Dec-12 13:56:15

I don't consider vaccination pointless. But it is most important for the most vunerable children , some of whom need to be unvaccinated. Why is this a disregard for my own children's health

Pagwatch Sat 01-Dec-12 13:58:55

Yes I suspect that it does a bit.

Although I m not sure that that answers my point.

naughtymummy Sat 01-Dec-12 14:00:36

Also not strangers , my brother's newborn, the child in the class on chemo, the asthmatic child, the malnourished child these are the children I am protecting. I thank god every day for my children's health.

Pagwatch Sat 01-Dec-12 14:02:52

The 'pointless' bit is where you said that you don't vaccinate to protect your own children but to protect others. So you were suggesting that even if the vaccine were pointless for your child you would proceed for societies sake.
That was the bit I was questioning - which you now sem to be correcting a bit.

Which frankly makes more sense to me smile
I could not get my head around the idea of giving a child a vaccine which would be of no use to them, purely for altruistic reasons

My cousin coukd not be vaccinated so my aunt didn't vaccinate his sister either because she wanted to treat them equally.

That was a bonkers reason IMO.

ArthurPewty Sat 01-Dec-12 16:28:01

i am well aware of what SSPE is.

ArthurPewty Sat 01-Dec-12 16:30:30

Living with autism and autoimmune disease under our roof, though, is a loaded gun i wont be playing russian roulette with willingly.

And whether you see it like that or not, you as a parent CHOOSE to take the child to submit to being injected. Since you can't see virii / bacteria and you can't therefore intentionally choose / avoid them, you can't compare the choice of not vaccinating with the choice of vaccinating. They are two different kinds of choices, with two different sets of ramifications.

I dont like playing with loaded weapons.

JoTheHot Sat 01-Dec-12 18:07:28

Playing with loaded weapons, as you call it, or being alive, as I call it, is just one of those things that is. You can't avoid it. We know is that autoimmune diseases are very common, and severe reactions to vaccines are exceptionally rare, as such the increased risk appears to be minuscule. In the absence of other complicating factors, vaccination is the revolver with fewer bullets in it.

virii - [eye roll]biscuit

I'm sure it was you pagwatch who once lectured me, at great length, about the importance of being polite.

Pagwatch Sat 01-Dec-12 18:28:49

Message deleted by Mumsnet for breaking our Talk Guidelines. Replies may also be deleted.

ArthurPewty Sat 01-Dec-12 18:59:06

"severe reactions to vaccines are exceptionally rare"

this is debatable.

as for the rest of your post, biscuit.

ArthurPewty Sat 01-Dec-12 18:59:54

"Sometimes though goading, smug, slightly thick,unfunny cunts tip me right over the edge"

my metaphorical tongue is metaphorically bleeding from biting it on this thread.

I think it's been a decent thread, - overall. Thank you.

ArthurPewty Sat 01-Dec-12 19:04:54

i have tried to behave for your sake Starlight flowers

grin

naughtymummy Sat 01-Dec-12 19:12:33

C'Mon Leonie even if you do attribute your Dcs autism to vaccination biscuit. It is still vanishingly rare.

Pagwatch Sat 01-Dec-12 19:15:15

I did my best too starlight. <helpful>

Seriously naughtymummy.you use a biscuit emoticon to a mother about their child with asd and you think that is appropriate?

ArthurPewty Sat 01-Dec-12 19:15:41

My DDs' autism isnt due to vaccination - cos they're not vaccinated.

Not sure where you got that from tbh, cos i never claimed it was. My husband's autism also isnt due to vaccination, because he was not vaccinated either.

naughtymummy Sat 01-Dec-12 19:23:39

No I apologise , I think the concept that vaccination causes autism is flawed.

Which type of autism? You do know it's autisms not autism don't you?

naughtymummy Sat 01-Dec-12 20:56:33

Which type of autism do you think vaccines cause ?

Pagwatch Sat 01-Dec-12 21:03:23

Ooh Is this like a game? Is it my turn?

Which type of autism do you think vaccines didn't cause?

Or can I start an argument about something else that Leonie didn't actually say?

Oh we'll - lol. I've had 3 glasses of wine so go for it...... grin

I might even join in!

Funnily enough, in my wine state I just cannot be arsed with no written declarations!!!!!!!

ArthurPewty Sat 01-Dec-12 21:53:10

i believe MMR vaccinations do cause some autism - because it has been proven to be so.

But there is basically more than one "autism" - and my kids/husband have the kind which seems, at a glance, to be inherited / genetic.

I also score on the autistic spectrum though i have no official diagnosis. I was vaccinated (carefully and only for a few things) in America - by a mom who knew that we had a nasty family history, and felt that caution was warranted - in the late 70s / early 80s when i was young.

Lougle Sat 01-Dec-12 22:08:19

See...I've sat on my hands a bit here. I think it is breathtakingly arrogant to say that something which isn't proven has been disproven, especially when there are parents who have living proof of the link between vaccination and autism in their child.

Now, on balance, I think the MMR etc., are safe for the vast majority of children, and the benefits of the MMR for those children and for those who cannot be vaccinated is evidenced. However, for those children who have a reaction, either immediately or delayed, it is devestating.

Why can't people accept that science is not exact, that we don't know far more than we know and that until we know everything, there will be links between events which cannot withstand robust evidential challenge, but nonetheless are there.

Why do people have to square up to posters who care, day in day out, for children who have been affected by vaccines and tell them that their life is not real?

Why not ask my friends who sat with their kids in ICU/HDU post MMR naughtymumy. Maybe their type of autism. In one case at least the paediatrician seen to think so.

The powers that be seen reluctant to find out either way so I guess we will never know.

HTH

edam Sat 01-Dec-12 22:43:38

You can vaccinate your child to protect others in certain circumstances. I chose singles for ds (after a great deal of research and in the knowledge that singles themselves weren't necessarily an evidence-based choice) but chose to include rubella vaccine. Because I wouldn't want any risk of my child transmitting rubella to a pregnant woman.

I had what we called German measles as a child before the vax was available - very minor illness but in quarantine so a week off school, which at the time I thought was fab. But my best friend at school was deaf in one ear and had a hole in her heart due to rubella in her Mother's pregnancy, so there was no way I wanted to cause any harm to anyone else.

I lived next door to a rubella baby (now adult!)

DS1 caught rubella from a vaccinated child (we knew it was coming so stayed in; more than one way to be responsible blah blah blah).

edam Sat 01-Dec-12 23:57:00

Oh yes of course, wasn't having a pop at anyone else, especially not people who have good reason not to vaccinate. Just making the point it can be altruistic in some circumstances (although still ultimately selfish because risking ds giving rubella to anyone else would have made me feel shit).

lisalisa Sun 02-Dec-12 00:04:33

saintlyjimjams - if you are still awake - I read this thread and felt nostalgic. Are you the jimjams of old - of about 10 years ago? If so i remember my very first intro to MN and the very first time |MN really changed me was a vax thread and your heartbreaking and emotive post about your son and his autism. Is it you?

ElaineBenes Sun 02-Dec-12 00:41:39

If I were in your position, Starlight (and Clumsasaurus), I'd insist on a referral to a paediatric immunologist (and pay for it myself if GP refused and I had the finances to do so). Especially if I had a different reason to refuse each vaccine for each of my 3 children. I'd really want to know what an expert in the field, with access to the latest research, had to say before I made the decision to go against medical advice.

Fifis25StottieCakes Sun 02-Dec-12 01:08:27

My mil didn't vaccinate her 2 against whopping cough due to the scare in the 70's. They both caught it and were in hopital for a while. I vaccinated mine on her advice. Its hard, i guess their your kids so your choice, you have got your reasons, sorry not much help. I guess the nurse is trying to cover herself although a simple decleration would have been enough

It's okay Edam I lknow you weren't - just seemed a good place to mention it. I do know a rubella baby (as mentioned) and someone permanently damaged from measles (my mum). I also see the other side.

Yep lisalisa it's me smile ds1 doing (in his own way) very well ondeed now (there's a link in my profile to more info). Hope all is well with you x

naughtymummy Sun 02-Dec-12 08:12:52

All I am saying is that their is insufficient evidence. The reactions are exceptionally rare.

I am aware that ASD is an umbrella term. Most cases are multifactorial (including a genetic predisposition). I am slightly confessed why Leonie is saying that severe reactions to vaccines are more common, even though her children are unimmunized.

IsabelleRinging Sun 02-Dec-12 08:27:02

Imagine the world we would be living in now if everyone thought like you OP.

I hope you realize that it is only because the majority of us are vaccinated that you are able to feel safe enough to take the risk that none of us will infect your child with a horrible and possibly life threatening or debilitating disease.

Have you actually read the thread Isabelle or did that little gem come from the OP.

Naughty mummy - I'm sure my son's case is genetic - although I think the 'genetics' affects his immune system ( given the form of his regression, family history, blah blah blah). Anyway multiplex and simplex cases have very different 'genetics' that much is known.

lyndie Netherlands Sun 02-Dec-12 08:38:49

Why can't OP get a referral to a clinical geneticist? It would be justified given the history and risks - even to have the precise genetic defect explained in detail. Most GPs would find it difficult to confidently interpret these tests. Then you would have some evidence to base future decisions on.

Firelighters Sun 02-Dec-12 08:48:10

"Why do people have to square up to posters who care, day in day out, for children who have been affected by vaccines and tell them that their life is not real?"

Yes, this, agree.

Firelighters Sun 02-Dec-12 08:53:09

"I don't believe that anyone would vaccinate only to protect other children.
I think it is a truly admirable thing to factor in. But I simply don't believe it is ever the only reaon."

I agree with this also.

Elaine I'm not going against medical advice. I haven't had any. I have just been given a generic population-level scare story. No-one will agree to give me access to individual medical advice.

I suppose I could always add this to the very long list of fights for services on behalf of my disabled child but I only have so much in the way of resources and on balance I'd rather spend the time with my children.

Influencing my decision in this (and many things now) is having been failed repeatedly and mercilessly by people paid by the state to help us. I do not have the respect for professional opinion I once had.

marriedinwhite Sun 02-Dec-12 08:55:45

I'm not trawling through all of this but hope someone has said that the entire issue of vaccination is a complex one and on the basis of the information about the risks and the advantages for a variety of people with a variety of potential or pre-existing medical conditions that is made available by health authorities on a public wide basis combined with the grave lack of knowledge by the majority of health visitors and practice nurses who are able only to quote the leaflet then no, the present system is not satisfactory.

I am pro vaccination by the way but I think those responsible for it would achieve higher overall rates if they improved the manner or their communication with the public and with mothers in particular.

isabel you post makes no sense in the context of this thread.

ArthurPewty Sun 02-Dec-12 09:01:46

I am slightly confessed why Leonie is saying that severe reactions to vaccines are more common, even though her children are unimmunized.

So i'm not allowed to have an opinion on the relative frequency of reactions because mine haven't experienced it personally?

naughtymummy Sun 02-Dec-12 09:54:15

But Leoine, you give no reasons for this belief

GeorgeCauldron Sun 02-Dec-12 09:55:39

People should make up their own minds, of course. But they should also avoid posting misleading and potentially dangerous anti-vaccine nonsense like this:

"i believe MMR vaccinations do cause some autism - because it has been proven to be so"

and this:

"...especially when there are parents who have living proof of the link between vaccination and autism in their child."

Nobody 'squares up' to people who live with autism, or with any other disability. They simply want hard-won and hugely beneficial medical advances - particularly ones whose benefits multiply when as many as possible are included - not to be undermined by scaremongering anecdote.

ArthurPewty Sun 02-Dec-12 09:58:30

naughty: do i have to provide you with what i consider to be proof?

everyone makes up their own minds.

If the MMR has never caused autism, then why have families been paid compensation?

JoTheHot Sun 02-Dec-12 10:48:58

If you say you have proof, and then refuse to divulge it, people will assume you have something you're calling proof, but that you know isn't. They will assume you know people who have had MMR and have developed ASD, and who believe the two to be linked, and that you believe them. Because it relies on belief, it's an article of faith, not a proof.

Now you understand why I too am sometimes rude pagwatch. BTW, I'm not thick, but then you knew that. You were just consumed with spite, and wrote any old vindictive crap.

If I were to say that eating McDonalds caused my Ds' autism then do you think a judge would rule that they award us financial compensation based on this 'belief'?

ArthurPewty Sun 02-Dec-12 10:59:00

biscuit
not in the mood for this, and I wont be responsible for Starlight's thread degenerating into a pile of shit because someone's goading me.

[cupoftea]

ArthurPewty Sun 02-Dec-12 10:59:28

oops, brew

naughtymummy Sun 02-Dec-12 12:23:06

Leoine you said that severe reaction to vaccines weren't rare and that it had been proved that MMR causes autism and I just asking why you believe this.

Pagwatch Sun 02-Dec-12 12:24:17

Yes yes. I am the spiteful one.
I often rock up on threads where people are talking about the difficult life choices they face whilst living with their profoundly disabled child in order to post mocking, snide and goading posts.

That is indeed thick and cuntish behaviour. If done by someone who also thinks they have a high IQit just makes it even scummier.

naughtymummy Sun 02-Dec-12 12:24:38

So I can be better informed

naughtymummy Sun 02-Dec-12 12:35:58

To be clear, I respect star lights' decision not to immunise. I think it sucks that she can't access information to help her make a more informed decision. She has obviously been through a lot and is now being failed by HCPs again.

However this doesn't negate the safety and importance of vaccination for the vast majority of the population (which Leonie appears to be questioning).

Firelighters Sun 02-Dec-12 12:40:21

You'd don't know that. People don't know if their child is a at higher risk until they have a "damaged" child. So you can't say that you accept "not vaccinating" when people have a child at higher risk (but not otherwise) because you don't know, you can't always tell. People are just supposed to offer up their firstborns as a living experiment. And quite often when things do go wrong they're then disagreed with (by people who don't even know them or their child!), laughed at, sneered at, sometimes even called hysterical or stupid and so on. So you aren't really in a position to judge or to give your respect or withdraw it.

naughtymummy Sun 02-Dec-12 12:50:30

Well you can asses some risks obviously. So firefighters would you advocate vaccinating no one in case they had some phenomenally rare reaction to it.

ElaineBenes Sun 02-Dec-12 12:52:37

Starlight
I appreciate you have a lot of things on your plate. I'm also sorry that you've been let down.
But you're taking a decision, for more than one child, to leave them exposed to potentially harmful diseases. You have received medical advice - that your children are at increased risk of death and disability from not being vaccinated.
You are going against this advice for whatever reasons you have, don't you agree that it's therefore your responsibility to seek out the appropriate professional advice. Even if you later disregard that advice, at least youll be better informed.

naughtymummy Sun 02-Dec-12 12:55:33

The MMR (for example) has been around since at least the 70s (dh had it born in 1974 in Canada). Since the Wakefield appear it has had loads of research done on it. I would hardly describe it as experimental !

naughtymummy Sun 02-Dec-12 12:56:10

Wakefield paper

OneMoreChap Sun 02-Dec-12 12:57:04

LeonieDelt Sat 01-Dec-12 21:53:10
i believe MMR vaccinations do cause some autism - because it has been proven to be so

Oooh, cite for that, please?

ElaineBenes Sun 02-Dec-12 12:59:34

No ones goaded you leonie! You always come on to these threads, spout some unsubstantiated rubbish and when people call you on it, insist that you are under no obligation to back up your comments and that you're being goaded, picked on, bullied, whatever.

And pagwatch, that was mean and uncalled for. I don't know what being the parent of a disabled child has to do with it. Starlights op made no mention of a disabled child and jo certainly didn't mock anyone's experience of having a disabled child. I personally don't know which posters have disabled children and which don't. And I don't think that's an excuse for calling someone a cunt and a wanker. Very unpleasant.

ElaineBenes Sun 02-Dec-12 13:01:56

You won't get one, onemorechap, it's not based on any scientific evidence, it's a belief system.

sallysparrow157 Sun 02-Dec-12 13:27:36

Not read all of this yet but just wanted to respond to one of your points Starlight, re vaccinations being safe at 2 months but not at 1 month - it's actually not because of safety but because of response to the vaccination.

When babies are born they are not able to produce their own antibodies. Over the first few months of life they develop the ability to produce antibodies. However, in the first couple of months of life they have antibodies from the mum and if the mum breastfeeds they will continue to get some antibodies this way too.

Vaccinations work by injecting a small amount of either a killed verson of the bug vaccinating against, or a bit of the bug's genetic material, into the body, he body produces antibodies against that and when the person next encounters that bug the antibodies are able to fight the bug so they don't get the infection (I'm using the highly technical term 'bug' to cover bacteria and viruses). This is exactly what they body does in response to getting the actual infection but with the immunisation you don't get sick because the bug has been either killed or broken down. You may get a fever and aches and pains as this is the body recognising the bug as a pathogen and mounting an immune response. This immune response needs to happen or the immunisation won't work.

Very young babies less than a month of age produce such a small amount of antibodies if any that there is no point giving them an immunisation - the body can't mount an immune response. However they are still protected by the mum's antibodies. As they get a bit older the protection from the mum is wearing off and their ability to produce antibodies is kicking in a bit so we immunise them against things that kill babies such as H. influenzae (causes horrible horrible meningitis that is very often fatal and throat infections that can cause the upper airway to close completely leading to death by suffocation), pneumococcus and men. c (which also both cause fatal/disabling meningitis), whooping cough (which is just highly unpleasant in bigger people but fatal in some babies and incredibly difficult if not impossible to treat in the litle ones who get very sick).

However, their antibody production is still not great which is why they need boosters (wheras if you have an older child who is unimmunised they may just need one vaccination as they have much better antibody production).

So it's not a case of these vaccinations being unsafe for tiny babies, just that they won't work and they are less necessary as they still have mum's protection (hence the drive to immunise pregnant ladies against whooping cough - it's so the baby gets the antibodies through the placenta so is protected in the first month of life where it is most risky to get it (as the babies I have looked after who've died from whooping cough have caught it when they were too young for the vaccination)

As for the volume being injected being the same in everyone - it is because a very very tiny amount of the material is needed to mount an immune response and that doesnt vary by size of the person - all it needs is one or two bits of bug to come into contact with one or two white cells and that's enough - (with norovirus you can become infected by coming into contact with just 2 viruses!). These volumes have been studied carefully - immunised populations have been tested following immunisation to find the minimal amount required to cause immunity in the majority of people. Most of what's injected is actually water or saline and the volume chosen will be enough to ensure the vaccination is fully dissolved and also to be big enough that you don't lose half of it in the hub of the needle (generally if I'm injecting something that is less than a quarter of a ml or so I'll dilute it just cause it makes it easier to measure and inject)

'You are going against this advice for whatever reasons you have, don't you agree that it's therefore your responsibility to seek out the appropriate professional advice. Even if you later disregard that advice, at least youll be better informed.'

I have not had medical advice that is specific to my circumstances. I think it is my responsibility to seek it out yes, and I have done so to the best of my ability. I also think it is the responsibility of those who promote the vaccination programme to provide this information easily, in a balanced and informed way and without a fight.

I have to say too, that it is likely that all I could hope to gain from such information is better understanding of the complexity between genetics and reaction to vaccinations that are specific to us, NOT absolutely proof that the DTP will cause renal failure to justify the decision to forego vaccination. Afterall, I have a similar genetic make up, received the DTP and as yet have not suffered renal failure. But that does not mean either, that the DTP is safe for my family. Nor does it mean that it is 'probably safe' for my family.

I suspect this is one of the reasons why my GP will not fund investigations and instead simply quote NHS guidelines at population level. Not necessarily because she is an evil, misleading, financially incentivised GP (although actually the GP Manager person pretty much is - and bonkers - telling me that I couldn't have a homebirth with no.3 because I wouldn't be able to cope with the pain, and that I had to have a pregnancy test at 38 weeks before she would refer me hmm).

sallysparrow157 Sun 02-Dec-12 13:48:53

I do agree that anyone who makes a choice not to immunise their children should sign some form of consent that they understand the potential consequences which do include death. I don't agree that you should have to sign a disclaimer saying said death is your responsibility though.

You have to consent for any medical intervention done to your child including immunising. Having looked after children who have died or become severely disabled due to diseases for which you can immunise against, if I was a GP (which I'm not) I would feel it was my responsibility as the child's advocate to ensure that the parent deciding not to immunise was fully informed and was aware of the severity of the conditions vaccianted against and the relative safety of vaccination (Nothing is 100% safe and without going into MMR/autism and so on vaccinations can cause anaphylactic reactions, localised skin infections, febrile convulsions and so on and I would want my patient to be aware of the risks and benefits in order to make an informed choice)

On the consent form families sign for some types of paediatric surgery in some of my patients the risk of death is stated as the first on the list of significant complications. Yes of course we hope it won't happen and usually it doesn't and the benefits of the procedure are thought by highly trained medical professionals to outweigh the risks. But we can't ignore the real but small risk of death and families must be aware of that.

I strongly feel that the benefits of vaccinating outweigh the risk in the majority of cases. There is a small risk of preventable death or disability if children are unvaccinated. It's really important that families are aware of that and understand it as part of their decision making process. It's not making you take responsibility, it's not a watching-our-backs exercise, it's a very important part of the process of informed consent.

sallysparrow157 Sun 02-Dec-12 13:53:47

I'm not necessarily talking about Starlight's position in my above post - as you have questions that are not being answered by your medical team you are not able to give fully informed consent either for or against immunising as there's no way for you to balance the risks and benefits as you don't know for sure what the risks are. In your case your medical team SHOULD be moving hell and high water in order to sort this out for you and I really feel you should push for a referral to a paediatric nephrologist (before a genetecist if anything as if they can show you any new evidence that the vaccination is or isn't safe in this situation you may not even need the genetic tests in the first place (which as well as probably being expensive are often incredibly difficult to process and may lead to your children having to have repeated blood tests))

I didn't mention my disabled ds in my OP as I don't think his particular disability was caused or even triggered (although I cannot say that it definately didn't make his condition worse) by vaccinations.

However, it is relevant to the extent that I know should I have a vaccine-damaged child we would be treated inhumanely, denied medical treatment, essential support and generally be treated as a parasite by society.

It is not only the risk of disability that one needs to consider, which whilst devestating does not come close to injecting misery into a family as the subsequent treatment as a consequence.

ElaineBenes Sun 02-Dec-12 14:01:13

Agree with you sallysparrow.

I don't know what your specific concerns are starlight but those articles about renal failure, for example, are all more than 20 years old. Surely a specialist, in this case a nephrologist, would know the current research and how it applies to your family - and also whether the disease itself presents an increased risk for you.

ElaineBenes Sun 02-Dec-12 14:03:42

I don't think that's quite true starlight. God forbid it should happen to you, but if you have a vaccine damaged child you are at least entitled to compensation, which is not true of disease damage.

You are not entitled to compensation if your child dies under the age of 2 from a vaccination (you are, if they die age two or older).

And all the people I know with apparently vaccine damaged children have been treated in exactly the way starlight describes. Even those, who after battles lasting many years received compensation for profound damage.

ElaineBenes Sun 02-Dec-12 14:19:02

Have any children actually died from vaccination in the Uk in recent memory? I've never heard of any.

Yes, if you read the JABS forum (do be sensitive if you do), then there are a number of people who have received letters saying their claim for compensation cannot be processed because their child was under the age of 2 when they died. I don't suppose they'll exist as an official figure. Some would argue that some cases of SIDS are vaccine related. Officially that doesn't happen.

Other countries are rather better at considering the possibility of a link between a sudden death and a recently given vaccination.

zzzzz Sun 02-Dec-12 14:48:34

There is an assumption in some of the posts above that their is huge support for damaged/disabled children here in the uk.

That people who don't have this support are either slightly barmy misfits who are troublesome to deal with, or that their children are not really "that" bad. This simpley isn't true.

I have 2 children with sn, one born so and one became so after illness. There is little or no support for us. One is likely to live independently if we can keep her healthy over the next decade and the other probably won't.

Children damaged by immunisation may after financially crippling legal action, get compensation, but they will be subject to the same system I endure.

I am be pro immunisation, but I would not immunise a child I considered to be at risk. In one of my children's cases we were instructed not to immunise her by her peadiatrician given her brothers disabilit and her own. I doubt they would have suggested not to if there was no concern as to the result?

There also seems to be a vibe that you can only decide not to vacinate if you are not properly informed. Ie agree or get more information, which is a bit daft.

The Torygraph seems to suggest there have been deaths recognised as being due to vaccination (on balance or probabilities) but it's all terrible cloak and dagger.

Yes, quite zzzzzz.

ElaineBenes Sun 02-Dec-12 14:54:16

Other than a anti vaccine dodgy website, there is no scientific evidence of a link between SIDS and vaccination. Quite the opposite is true in fact.

There is no need to compensate parents for deaths due to vaccines in the uk since they have not occurred in recent memory.

'I don't think that's quite true starlight. God forbid it should happen to you, but if you have a vaccine damaged child you are at least entitled to compensation, which is not true of disease damage.'

Elaine Firstly you have to prove it, in a society hell-bent on denying it could ever happen. This is very costly in resources and finances, not to mention time for which is in short supply for a parent with a severely disabled child who has been shunned and sent into poverty by their child's disability.

THEN, if you can convince a judge (which happens - even despite the general reluctance of legal teams to take on such cases) the amount awarded is unlikely to even pay for a year of care for the child in question, let alone compensate the parents for the years and years of bringing the case to justice.

And it isn't just a case of proving the jabs caused the disability, in the worst cases it will exist alongside threats of child protection, challenge to parenting skills, dragging up of other medical history of the family, judging and questioning of decisions from what time meals are eaten to how much post is in the porch.

Benefits can be stopped as an anonymous person reports fraudulent claims. Resolved after a stressful investigation, but with not backdating of stopped payments.

I doubt you would believe this Elaine. Most people don't which is why it happens.

ElaineBenes Sun 02-Dec-12 14:56:30

It's not cloak and dagger at all.

Elaine I know you assume that all people who have watched their child react to a vaccination are insane lunatics who should be locked away for the safety of others (rather nicely demonstrating zzzz's point) the founder of JABS did eventually (after many years of fighting) get compensation (and official recognition) for her child's vaccine damage. So perhaps she wasn't quite so 'dodgy'.

Anyway, of you want to listen to individual stories (nothing quite like hands in ears la la laing is there) then perhaps follow up with the Japanese ministry of health. I'm not sure there's any reason why Japanese infants should be more susceptible to dying from vaccinations than British ones.

ElaineBenes Sun 02-Dec-12 15:02:32

I believe you, starlight, regarding the lack of support for parents of disabled children. I have friends whose children are disabled and, like you point out, they are on the verge of poverty due to the caring responsibilities. it's not fair or just in a developed and rich society.

Regarding vaccines being the cause of such disability, I do think it's extremely rare and I don't think there's a conspiracy to suppress findings or data.

Personally, I think that if your child suffered a disability as a result of a vaccine preventable disease, you might find sympathy thin on the ground although all disabled people are entitled to care and support regardless of the provenance of their disability. You don't get ANY compensation from brain damage due to measles.

Did you read the Torygraph link? The information was obtained after a FOI request. That's hardly easily accessible information. hmm

ElaineBenes Sun 02-Dec-12 15:10:59

Civil servants know that freedom of information exists, it's not a secret. Nothing was hidden or buried.

And regarding that Japanese case, has any causation been established? Seems to be in the realms of correlation, epscially since half the babies had serious jnderlying heart conditions, and the Japanese taking the precautionary principle. Kind of like they did with thimerosal which was later shown to have no effect on any vaccine reactions.

ElaineBenes Sun 02-Dec-12 15:12:26

I'm not saying anyone is an insane lunatic, I just prefer to look to scientific evidence rather than the unverified experiences of people I don't know.

How strange to think a government should take a precautionary principle. The UK doesn't have a very good record with that. No doubt you believe the UK was entirely reasonable to keep using Urabe strain mumps vaccination.

3bunnies Sun 02-Dec-12 15:16:35

Our decision not to vaccinate when tiny was based partly on the feeling that we would feel worse if our children died or were severely injured because of something we had done (vaccinate), than something we hadn't done, it was fate or act of God etc.

Our reasons not too vaccinate were the unexplained anaphalactic shock of my sis (only revived because my mother knew paediatric first aid) and petit mal (me), both within an hour of different innoculations at different ages. As with both innnoculations the chances of these fairly serious complication was less than 1 in 1000, the chances of both appearing by chance in siblings was less than 1 in a million. No medical professional has been able to explain the co-occurance of these reactions.

All three have now had MMR, and 2/3 have had DTP, delayed until they were over 3 (whooping cough was the one my sister reacted to, she and I both developed WC anyway when I was 3 and she was 6).

I wouldn't mind writing that down and signing it for any records though.

Elaine you repeatedly portray anyone who believes their child to be vaccine damaged as either mistaken, obtuse or insane. You do it all the time on these threads.

ArthurPewty Sun 02-Dec-12 15:38:15

I know its the daily fail, but some others might want to look up the facts in this interesting case.

Sparklyboots Sun 02-Dec-12 15:58:57

Well I'm quite late to the bunfight party but I did just want to say that I sort of thought Naughtymummy was more or less on Starlight's side. If I was Starlight, I'd make the same decision she has made, because she suspects her child might be disposed to reaction to the vaccine(s). But after a great deal of indecision on my part, I have had my DS immunised (though we are still a jab behind) and really what tipped the balance is that what Naughtymummy says - there are children who can't or shouldn't have the vaccine - I think Starlight's DC are among them - and they offered some protection by 'herd' immunity (awful phrase).

On balance of risks to DS with immunisation vs. non-immunisation, I couldn't decide. I did think he seems pretty tough physically and would probably do alright with the vaccine; I had no reason to think otherwise but at the same time, couldn't get over that idea of Firelight's that you basically have to hand over your firstborn as an experiment in genetic predisposition. But really, there are children who are much more likely to be vulnerable and their protection rests in part with me. Not to mention the otherwise vulnerable that we may come into contact with (inc. preg women, amongst whose number I am recently counted). So the decision about immunisation was made in reference to others as much as we'd considered ourselves, and without that consideration, DS would not be immunised. In that regard, we immunised DS because of the social implications. I recognise that we took a risk with DS, but think also it's a risk not to, and also the risks affect others. So we made our choice. Which I somehow feel bad about, even though he's fine.

What I think is awful is the way that in order to pursue a narrative of safety, the parents of vaccine damaged children have been treated by the NHS and the press like lunatics. I do think there is a tendency to minimalise, dismiss and disregard counter examples in pursuit of this narrative, and it amounts to a cover up whether or not it is intended as such. I was spectacularly unconvinced by my own GPs insistence that she vaccinated her own children - I mean, I really do hope she believes in the institutional practices she's pushing...

MousyMouse Sun 02-Dec-12 16:17:46

if you have any side effects with vaccines (or any other medicines) you can report it to the regulators via the yellow card scheme

Pagwatch Sun 02-Dec-12 16:41:25

Then report me Elaine. I m quite relaxed about that.

I think coming on a thread like this and being sneery is cuntish.
So I am only calling people cunts for goading and sneering.
It's is a bit 'if the cap fits' really.

ElaineBenes Sun 02-Dec-12 17:06:48

Saintly, I've never commented on anyone's individual experiences, I think there is some projection going on.

Pagwatch, no, I won't report it. I'd rather leave it, especially since youve posted previously about the importance of keeping things polite and repsectful. its up to jo to report it if she feels the need. After all the damage has been done already! I never noticed any sneering and even so, personal attacks and abusive langauge are pretty unpleasant even if you are very relaxed about them.

JoTheHot Sun 02-Dec-12 17:40:40

I hope the posts stay. Pagwatch once told me that I weakened my own position by being rude, and I believe she was right. Sometimes she engages, today she wants to stand on the sidelines, cheering on one side and insulting the other. I have every possible sympathy for her home life, but no sympathy whatsoever for her view that this entitles her, or others in similar positions, to spread unsubstantiated smears without being challenged. She says this means I'm a cunt. [shrugs]

Why would pagwatch need 'sympathy' for her home life? confused

Sort of comment which demonstrates the gap really. : gives up:

ArthurPewty Sun 02-Dec-12 17:54:06

Elaine: you may not have posted the comments on personal experiences here in this thread, but you have repeatedly goaded, mocked and been very very nasty to me on other threads in the past. Hence my silence and ignoring you on this one.

ElaineBenes Sun 02-Dec-12 17:59:27

Noone has goaded you leonie. Interesting that you cry that you've been goaded here as well. Asking you to substantiate your pretty outrageous comments regarding vaccinations is not goading.

I do admit having had mocked you in the past for making very silly and illogical statements which is admittedly not ok or nice. But as pagwatch herself succinctly put it 'if the cap fits'....

ElaineBenes Sun 02-Dec-12 18:01:51

Saintly, given that pagwatch has called jo both a cunt and a wanker, as well as thick, I don't think you can really judge her for using the word 'sympathy'. I'd say thats pretty good going considering

ArthurPewty Sun 02-Dec-12 18:10:49

Frankly, Pag and Jimjams can say wtfever they want when faced with people dishing up the kind of rubbish you've famous for, Elaine.

Swear away ladies. grin

One word: disingenuous.

I think pagwatch has been provoked, cleverly and easy to miss by those who lack the emotional intelligence to remember there's a real child at the end of all this playing with words.

Some of us don't inhabit the world where vaccine damage never occurs.

I am interested in your views on the urabe debacle - particularly the link I posted earlier. Was it you who said previously that was an example of vaccine safety checks working? (Just maybe not as well in the UK compared to Canada, the Philippines, Japan, anywhere else).

ArthurPewty Sun 02-Dec-12 18:11:24

Elaine: dont think i'm "crying" when i post - you're being nasty, again.

ArthurPewty Sun 02-Dec-12 18:12:16

I think pagwatch has been provoked, cleverly and easy to miss by those who lack the emotional intelligence to remember there's a real child at the end of all this playing with words.

Amen.

Oh the you in the previous post not you leonie. Obviously.

ElaineBenes Sun 02-Dec-12 18:28:15

Real children are also killed and damaged by vaccine preventable diseases. I've never questioned pagwatchs account of what happened to her ds, she herself has questioned whether her ds was actually damaged by a vaccine or whether it was coincidence. I'd only say that the scientific evidence suggests very much the latter rather than the former.

Still no excuse for abusive language IMO, despite leonie's encouragement (I suspect the irony has missed her).

ElaineBenes Sun 02-Dec-12 18:29:52

Leonie, I think you'll find that encouraging other posters to attack and use abusive language towards another poster is actually called bullying.

ElaineBenes Sun 02-Dec-12 18:31:24

Don't worry, I won't report it. I prefer these posts to be left as I feel that they are very revealing

The 'scientific evidence' says nothing at all about Pagwatch's son, as it is population level evidence. For an individual child it is individual clinical evidence that is important. Luckily some of my friends have had doctors sensible enough to look at clinical evidence. But I seem to remember that discussion went on for 30 pages before.

Nothing about urabe strain then. :loses interest:

Pagwatch Sun 02-Dec-12 18:45:21

Thats good Elaine. I agree with you.

These threads are indeed very revealing.
There are posters who turn up for all sorts of reasons. Personal experience, a professional interest - maybe they just catch the eye in active convos.
Those contributors bring their views and that is valid and interesting, sometimes it is supportive or informative.

Then there is another class of poster. One who does a silent shout of joy that they have a thread which allows them, with no empathy or compassion, to arrive and bait. They don't care that they may be talking to people who had followed the vaccination programme until they had a dreadful experience. That they may be caring for a profoundly disabled child. They know that is who they are baiting because they have been there before - posted snide goading posts before - it is just a crass excercise in prodding and insulting for as long as the thread lasts.

Yes, I can admit my posting rates quite high on an uncouth scale. But generally, as a poster on MN, I am polite and fair minded. I just have no patience with the emotionally thuggish.

I have just become immensely bored of the moral compass that allows people to taunt and goad simply to pass a presumeably bored hour and then feign indignation when I say cunt. Pathetic.

zzzzz Sun 02-Dec-12 18:46:00

This discussion has lost focus to the point it is pretty meaningless.

I am amazed that anyone can simultaneously hold the view that vaccines are powerful tools in fighting scary life threatening diseases, and that they are so benign that there can be no valid reason not to give them to your child. hmm

Vaccination is without doubt a mega tool in our arsenal against infectious disease, but to suggest there are no victims of friendly fire is inaccurate at best.

ElaineBenes Sun 02-Dec-12 19:05:17

Of course clinicians at the individual level should look at the individual saintly. And there are some rare cases of vaccine damage which may very well get overlooked.

Pagwatch, I found that post quite passive aggressive. If you wish to make a point to any one poster, then please say it. You clearly dont have a problem with doing so.

Pagwatch Sun 02-Dec-12 19:11:40

It's not passive aggressive. It is explaining where my personal line is on these threads.
Turn up and express your opinion by all means. But turning up simply to shit stir makes me personally view those comments with contempt.
I don't have a problem with any particular poster. I have a problem with shit stirrers.

ElaineBenes Sun 02-Dec-12 19:13:04

Just to add, the concept of clinicians evaluating the individual experience was exactly the reason why my advice to starlight was to geis specialist advice, it is entiirely possible that in stsrlights case, She is supported in her decision by a medical professional, even if is purely based on the precautionary principle.

I didn't criticise her decision, I know nothing about her reasons so wouldn't presume to criticise her decision (and she never asked) but I do think that if you decide not to vaccinate you should seek out specialist professional advice to fully understand the risks involved and what the latest research says (and not just rely on google).

Of course clinicians at the individual level should look at the individual saintly. And there are some rare cases of vaccine damage which may very well get overlooked.

Wow. That's further than we've got in the previous 6 months.

ElaineBenes Sun 02-Dec-12 19:15:20

Well, I don't like shit stirrers any more than you pagwatch and I've seen them on both sides

ElaineBenes Sun 02-Dec-12 19:15:53

I've never said differently saintly.

ArthurPewty Sun 02-Dec-12 19:18:35

"I've never said differently saintly."

Oh yes you have, Elaine.

Pagwatch Sun 02-Dec-12 19:19:51

Again, marvellous Elaine. I agree with that too.

Perhaps the fact that this discussion is broadly a exchange of ideas for you but one that affects every waking moment of my life causes us to deal with the shit stirrers somewhat differently?

ElaineBenes Sun 02-Dec-12 19:25:49

Possibly pagwatch

I remember a thread where leonie started laying into people running vaccination programmes in developing countries, calling them murderers and the like, which I found myself reacting to emotionally and even getting angry as many of these people are friends and colleagues.

So, yes, I do appreciate its an emotive topic for you.

ArthurPewty Sun 02-Dec-12 19:27:15

biscuit

Pagwatch Sun 02-Dec-12 19:34:31

I have absoloutely no problem with your reacting to that type of posting ny wy you want to. You would be responding to the content of the thread.
My problem is with people who see vaccination in a thread and use that to turn up and start goading.

A comparison would be the difference between turning up to voice your pro breast feeding views on a thread titled 'do you think formula feeding should be promoted more' and on a thread titled 'breast feeding is painful and I can't manage'.
IMO the first is valid and reasonable, the second is unpleasant and not in the spirit of the site.

I, perhaps surprisingly, have no problem with people's views. I think pro vaccine is totally valid. I just dislike point scoring on threads which are about support rather than debate.

ElaineBenes Sun 02-Dec-12 20:07:28

Well, yeah, I agree with that pagwatch. There's a time and a place.

That said, if someone does post though and starts posting unsubstantiated anti vaccine propaganda, then I see nothing wrong with them being called on that (and vice versa depending on your viewpoint!). If a poster wants everyone to agree with you about how terrible vaccines are, I'm sure there are forums to be found on the various anti vax websites.

OliviaMumsnet (MNHQ) Sun 02-Dec-12 20:16:29

Pagwatch

I just dislike point scoring on threads which are about support rather than debate.

Us too
Peace and love, people.
Thanks

If a poster wants everyone to agree with you about how terrible vaccines are, I'm sure there are forums to be found on the various anti vax websites.

Once again completely failing to note that the vast majority of people who post on these threads and who get described as 'anti-vaxers' (a term meant in a derogatory fashion I guess) did vaccinate. And are perhaps repenting at leisure.

Why shouldn't they post about their experiences on a parenting website?

Pagwatch Sun 02-Dec-12 20:57:14

Peace and love Olivia grin

I am not anti- vaccine so I'll stay here I think.
I suspect there are also sites for people who think everyone should vaccinate regardless of experience. Perhaps people who want to barf on about that could seek them out.
Wouldn't life be nice all round grin

Starlight - do you appreciate that your brother is immuno-suppressed? Your unvaccinated children may pose a risk to his life if he has close contact with them. If he is running in to problems with his health you should make him aware of their situation so he can make an informed choice. I'm a bit puzzled by your history tbh. I don't see why Manchester would start transplant work up on a child when as you say, the operation would not be possible for another 20 years. That is quite confusing. The way I read your account is that your brother had had measles before developing renal failure - as well as having had a vaccination. I don't understand why you ascribe the responsibility to the vaccine and not the disease? In your shoes this history would make me keener to have vaccinations and avoid the dangers of wild illness. I think it might be useful for you to have a consultation with a nephrologust about your family history and risks to you all. If your brother would share any of his medical history with you (his clinic letters for example should summarise his diagnosis) then you could ask your GP to refer you for a discussion. If his transplant is packing up you might also want to consider if you want to be worked up as a donor. You don't really want to wait for him to be on dialysis before you do that.

Leonie - you mentioned the flu vaccine being offered to groups of people. It's offered to those with renal failure because as a body their immune systems are knackered and any illness hits them very hard. Transplant and dialysis patients are hugely vulnerable to infection. Having a flu jab is one way that they can try and protect themselves. As somebody who works with renal patients I believe it is my professional responsibility to have a flu jab too.

Northern They don't tell you if you are a good match at the time of testing, or at least they didn't. In any case, I would not agree to be a live donor.

My DB knows of our decision not to vaccinate. We never see him really as he lives too far to travel to even for a weekend. We're not close and we didn't grow up together. Get on fine though, just not much to do with each other.

As for why I was tested. I haven't got a clue tbh. Not sure my mum remembers correctly either as she was pretty traumatised at the time. DS had been hiding his illness and was pretty bad by the time he was admitted. In fact he probably could have had a transplant much sooner but was too ill and needed dialysis first.

zzzzz Sun 02-Dec-12 23:40:12

My experience of renal failure (sibling) is that you wait unil you are on dialysis before you go on the transplant list, and that boosts ou up the list.

zzzzz Sun 02-Dec-12 23:44:17

I'm not sure what the issue was with your db star, but perhaps they wanted to know if you had something like poly cystic kidneys, so they could monitor you closely and give you proactive support if you needed it, and the donar matching was a side issue?

ElaineBenes Mon 03-Dec-12 00:46:36

Saintly

Anyone can post wherever they wish.

All I said was that on this kind of forum, if you say something unsubstantiated (whether it's in favor of or against vaccines or whatever), you should expect to be called on it. If you want everyone to agree with you, then this is not the right forum.

If you want support, information, then fine. But not everyone is going to agree.

Thank you zzzzz. Perhaps that's what they were doing. My mum told me it was to see if I was a)a credible match and b)at risk of the same.

They didn't give the results to either of those questions but said we were similar. All of us in fact.

I suppose under the data protection act I have an entitlement to access whatever it was they found. Perhaps I'll do that in the first instance. It really never occured to me before now.

You don't need genetic testing to match for transplant. You need antibody whatsit grin

ZZZZZ - no you absolutely should not be waiting till on dialysis before getting in a transplant list. Having a pr-emptive transplant would avoid dialysis altogether and that is a good thing. There's no way to bump up the list. Kidneys are given on the basis of compatibility match. If you're the best match on the list then you get the kidney. I have known people be on the list between just a couple of days and several years.

zzzzz Mon 03-Dec-12 10:34:58

I think the process for my sibling went something like,

Presented with kidney infections in thirties
After several times went for scan of kidneys
Found to have cysts
Over the next decade
Diagnosed with poly cystic kidneys
Investigation into siblings and parents kidneys to see if shared condition or if sib is a mutant grin
Blood pressure and other side effects treated with ever higher doses of drugs put on transfer list
Dialysis by early Fortys followed by transplant.

Possibly others get on to the list earlier in the process, but I'm not sure how that would have happened for us.

I didn't realise the best fit got the kidney! I thought level of need came into it too.

I am quite shocked by that to be honest.

I don't like the thought that someone with an urgent need might be turned down in favour of an individual with working kidneys, because they are not quite such a good match. sad

Kidneys are a precious resource. They are also a fairly fussy and vulnerable organ. It's not ethical to put a kidney in to a person if you think it will work better in somebody else. Kidney failure tends to be a bit different from liver, lung or heart failure. If your function drops down to below 10% (ish - varies from person to person) then you can be put on dialysis. Dialysis is a pretty crap experience but it will give you enough function to keep you going for some time. Life expectancy and quality of life are massively improved by transplant but you need to be well enough to receive one. Some patients with renal failure will also have massive problems with their vascular system and the bottom line is that nobody will put a new kidney in to you if your body won't support it. Nobody gets on to the list without having end stage disease. You might have 12% function when transplanted, you might have 5%. Doesn't really make any odds, people with that degree of disfunction need a transplant. Everybody is urgent and everybody can wait iyswim. Some people will die waiting but they'll die because they have renal failure not because they didn't get a transplant at a certain point. Does that make sense?

zzzzz Mon 03-Dec-12 10:53:06

People are precious.

Why is it not ethical to put a kidney into someone if it will work better in someone else?

Surely 2 people alive with pretty good matches are better than one with a very good match?

Is end stage disease the same as saying you are on dialisys?

ArthurPewty Mon 03-Dec-12 11:42:35

there was a US congressional hearing about autism recently. It is interesting to [[http://www.ageofautism.com/2012/12/congressional-autism-hearing-take-note.html read what was written] by those involved, present, and affected by autism in the USA.

perhaps the UK will take note of what was said?

ArthurPewty Mon 03-Dec-12 11:42:55

When you reach Chronic kidney disease stage 5 aka end stage renal failure that means you either need some sort of renal replacement therapy - dialysis or transplant or you will decide not to follow that route and only have supportive care.

In terms of ethics, the match is done on the basis of best possible match because that kidney has the best possible chance with the best matching person - and each person has the best possible chance with the best possible match. There is nothing more miserable than a transplant that doesn't work. You can't predict which will and which won't but by getting the best match you give it the best chance. Somewhere hard choices have to be made unfortunately.

Doesn't that mean that the longer you are on the waiting list getting progressively unwell the less and less chance of being considered as able to give the rare available kidney it's best chance?

Lougle Mon 03-Dec-12 13:40:32

No, it shouldn't do, Star. There are two issues to be considered:

1. Best match - ABO blood group match, as many 'minor antigens' as possible match.

2. Recipient health - can they withstand the demands of surgery, do they have any conditions which mean that a transplant isn't viable?

Link here to the allocation criteria

I think you do get some extra points for having waited a long time but it's the match that's the main thing and some people will never match. Some people will be on the list and come off it because of health and some people will start dialysis being unfit for transplant and then ultimately get on the list when their health improves. Patients on the list have regular ecgs etc and if unwell or aware from their base unit they would be suspended from the list.
As with all organ donation, the more people who are willing to, on the worst day of their lives, make an incredibly generous gesture, the more lives will be improved and prolonged.

Lougle Mon 03-Dec-12 14:15:18

The link I posted shows the wait time being allocated between 0.5 and 5 points, favouring the longest waiting. Having said that, points are only allocated where there is a criteria tie-break.

Yes, in the case of two people with the same match that comes in to play.

My brother said that when he was called in to receive his kidney, there were others being called into their local transplant hospitals for the same kidney, should there be any indication after tests that he was not the best match on that day. They had to establish who, at which hospital was going to receive it before it could be transported.

Truly awful for all involved I imagine.

Luckily for him he got it. He was in a ward with 5 others and his was the only Kidney that suck. Awful again.

He was given an estimate of 10 years if he was lucky. He's had the odd rejection issue along the way but he's had a good 15 years so far.

zzzzz Mon 03-Dec-12 15:39:18

So in effect everyone is on dialisys before they hit the transplant list aka stage 5???

lisalisa Tue 04-Dec-12 22:26:06

Wow saintlyjimjams- only just seen your reply. MN has become such a big place now that its hard when you only log on occasionally to " see" those you " know". Do you think we may be the oldest posters here? I suppose this is one advantage of keeping original posting names - that we can still identify eachother aeons later!

Your ds must be about 16 ish now? So glad to hear he's doing well. I will never forget your posts about him running into doors and eating " crap " food when all around were tucking into wholemeal bread and fruit because that is all he would eat and the judgey faces of those around you.

I thnink - shamefacedly - that 10 years ago before I read your post and had no idea of autism at all - that I may have been a judgey face too. After I read your post I certainly viewed things very differently.

How lovely to still see you around and I wish all your family well x

It's nice to see others who don't vax on this thread too. We are at 6 dcs now and all mainly unvax apart from first dd who is partially vax . I say mainly unvax as dd4 caught natural measles when a young baby ( 9 months) and all dcs were advised to get MMR which they did. Still don't know if I would have given it had circumstances been differnt but unfortunately my darling daddy was dying at the time and passed away on the day the dcs had the vaxs so I was quite out of it and just remember nodding mutely when my GP in my lounge suggested it be done now without delay.

6 children -wow, that's brilliant.

He eats so well now - everything and anything, those dark days of no meat, fish, eggs, veg, cheese have gone. Loves a roast dinner!

Bit younger than 16 but well into puberty :shudder: grin

lisalisa Tue 04-Dec-12 22:34:39

Ah glad to hear that . I've got the puberty stage too - in fact toddlers and teenagers!

Eek! Teens and tweens is bad enough!

StarOfLightMcKings3 Thu 06-Dec-12 11:40:22

I wrote my note. I just got a phonecall telling me that I haven't put a reason.

I said it was very complicated. The nurse said well she had to put a reason into her file, so I said well, my ds has autism.

She responded that vaccinations don't cause autism.

So I asked her what reason would she find acceptable. She didn't have an answer.

I got cross at that point and told her that she can think about it and then put whatever reason she feels is an acceptable in her file but that I had done as I was asked even though I wasn't obliged to and that's as far as I was willing to go.

GalaxyDisaster Thu 06-Dec-12 12:00:33

Oh my goodness. That is awful. Glad you stood your ground. I could understand a note on the file so they know your decision, but beyond that it's just bullying.

StarOfLightMcKings3 Thu 06-Dec-12 12:51:05

Funny though, I actually saw the GP (about something else) this morning when I handed in my note and she mentioned the vaccs as I had ds with me and she remembered that I was considering it in light of my DB and just asked if I had given it any more thought.

A bit cheeky given I wasn't there for that, but I took it as just a GP showing in an interest in the family health in a general sense. However, when I said we're not doing it for the moment that was the end of it. Wonder why the nurse then hounded me, or do you think there is a good cop bad cop thing going on?

GalaxyDisaster Thu 06-Dec-12 12:58:08

Nah, I suspect you had a reasonable GP and a bonkers nurse!

I think following up on stuff generally is nice, if there is no coercion. My old GP if you dared to mention anything that wasn't the official reason for your appt you got told off. Maybe she was just ensuring that you realised you could talk about it if you wanted to. If her last update was you were 'considering' you might well have had more questions.

The nurse sounds as if she has a real bee in her bonnet. Funny really, the more senior we went I found the more medical staff were happy to discuss our situation with ds1 and the more able they were to understand the complexities of the decision. The paediatric neurologist and paediatrician have both said we're about ten years too early with our questions, to give them time and they may be able to tell us more although they appreciate our concerns and look forward to the day when they'll be able to answer them.

I think I would ask the nurse to summarise the latest research on autism and the immune system for you (it's not directly relevant to vax tbh but it will at least show her that she knows sweet FA about autism). Or I'd ask her to sign to say that she is advising that vaccinations need to be given and she agrees to be held responsible for any damage that occurs because of that advice. She may then remember that it's not actually her decision to make.

I've always found GP's fine tbh, have never been hassled about it (they only hassle me about getting a carer's check - must book one!)

zzzzz Thu 06-Dec-12 17:20:46

star she sounds utterly dreadful. sad

Some people are just limited, step around her and don't waste any energy letting her till you.

Join the discussion

Join the discussion

Registering is free, easy, and means you can join in the discussion, get discounts, win prizes and lots more.

Register now