MMR - tell me I have done the right thing

[georgiemama]

So, DS had his MMR today. He is totally fine, no temperature even. I know that doctor (has he been struck off?) was totally discredited but can't help having ridiculous niggling doubts. Reassure me someone!!!!

Tis fine Spicemonster - I understand where you are coming from.
the only thing to bear in mind is that I was not watching my sons hideous and frightening regression all on my own.
My brothers and sisters have children and several of them have refused for their children.
Some of the parents at Ds1's school watched in confusion as DS2 stopped waddling past and waving and saying haya to become a child that lay on the floor and bit his own hand bloody within a matter of weeks.
These parents will also not easily take their place in line at the GPs.
One of my friends back then also had a local cousin who regressed too. Some of the parents at that school have no apparent connection with the MMR but have good reasons to be wary of it.
I understand your point of course.
But I think parents are anxious to do the right thing ( as evidenced by the regular threads like this one). And I think it is at the very least unfortunate to assume that any parent would refuse vaccination on a whim. I think it is a dangerous notion that should be reconsidered.
parents on the whole are doing their very best and it is difficult. We shouldn't trivialise either group's concerns.

Thank you for your very calm response pagwatch and I understand totally where you're coming from.

I am very anxious about it - my nephew has aspergers and I have friends who have been through similar experiences to you which is why I'm opting for single jabs. Although my nephew had single jabs too so obviously that's no guarantee (although I don't think that his AS is linked to the jabs). I've weighed up all the different concerns and I've decided for me that the risks of my DS getting measles/mumps when there is such low take up round here (about 60% of children are unvaccinated) is greater IMO than him getting autism.

Such a tricky decision to make though ...

oneliein did your DD have just the first dose?

We have a measels outbreak here in SE London, and the NHS are recommending that all kids over 1 yo have two doses (a month or more apart) - apparently the first dose leaves a significant proportion without full immunity, but the second dose catches most of them.

My judgement when DD had her first dose was that measels (which if there isn't herd immunity from a high uptake in the population there WILL be an outbreak, in which one in ten kids catching it will require hospitalisation) was a greater risk than autism (which from the reports seems to affect a very small proportion of those receiving the vaccine).

But now because so many parents have refused to vaccinate their kids we have an outbreak, and so the rest of us have to give two doses

No probs Spicemonster - it is so difficult. Really really difficult

(But it made more so as some parents just love to be accusatory. As you can see )

I think most of the non MMR vaccinated children are single jabbed.

A regression is pretty easy to spot. DS1 lost words, sounds, refused to eat. When I watched (after years) the video of him pre-regression I was surprised to see how much he was doing. I had under-estimated how much he has done.

HIs regression followed a natural (viral) illness. The doctors have been happy to link that- it's in his notes.

AnnaPx - all the children are supposed to have 2 doses anyway, they are just recommending them closer together

Anna- where did you get the 1 in 10 needing hospitalisation rate from? I'm not arguing that measles can't be nasty- of course it can, but pre-vaccination the complication rate was nothing like that.

I don't think that they are having single jabs yurt - there have been 500 cases of measles already this year

In my borough (inner London) I think there is probably an even split between people who are worried about the effects and a large immigrant population coming from places where there is no immunisation programme in place

500 isn't that many though- not in a population the size of the UK and with something as virulent as measles. And given that the jab isn't 100% (especially in those under 18 months). Just before the introduction of the first measles jab back in 1970 there were up to 800 000 cases per year in the UK.

Of the people I know who have vaccinated at all (and I know quite a few) they're split between those who go to Steiner schools (and wouldn't have vaccinated anyway MMR scare or not) and those who have not vaccinated because of prior problems with vaccination in elder siblings.

I don't really understand the dept of health. IN 2001 (I have the letter in front of me) they said there was no problem at all with the vaccination rate of 88% - and this did not represent a loss of confidence - was the normal rate in fact.. Now they panic about rates in the 80's% . If you look at the boroughs with very low rates- they're in yummy mummy land- would love to know how many had singles there. Bet it's most of the gap.

DD had the 1st MMR @ 18months after lots of research & a very understanding dr.
She hasnt (nor will she) have the 2nd one as i have blood tests carried out every 2 years to check she is still immune.
the 2nd dose given to children is for the 10% of children for whom the 1st vaccine didnt work. When i did my research i wasnt happy with the follow up jab, as it was suggested that this too could have long term health implications for girls.

it is a very hard decision for any parent to have to make but if you are happy and know in your heart that you have done the right thing as far as you are concerned, then you shouldnt let anyone's influence or opinions affect your decision.

AFAIK they count the single jabs as immunised but will check when I give my letter to my GP.

My first son is autistic but I had no worries at all about the MMR for my second son because I don't believe in the theory of causition. My autistic son's speech has got much better since his MMR booster but I don't think there is any link. I don't mean to offend anyone it's just a personal opinion like everyone else's. I respect others' freedom of choice because in most cases, freedom is more important than even health however important that may be.

actually, i was pro wakefield until i looked into both sides of it. now, mine have all been 'mmred', if a bit late. you have done the right thing.

There are many routes to autism. And there are different types (gentically and physiologically) of autism.

MMR didn't trigger my son's autism - a different virus did. We can tell from the rest of the family history that his is likely caused by a single susceptible gene + environmental trigger- or perhaps series of triggers (rather than the additive effects of many genes- as found in families with ASD/ASD traits through the generations).

Other people will have different routes to this condition- which has huge variation. I do know that many people in our family have 'odd' immune systems expressed in autoimmune type conditions. I also know that some cases of autism have been shown to have immune system irregularities.

I look forward to the day when there's a better understanding of the different autism subgroups. The work is now being done at last.

single jabs are immunised but news reposts talk about the MMR rate and future mass outbreaks because of low MMR coverage- they take no account of single jabs. The HA have no way of knowing anyway as they're done privately (except in the case of one NHS GP who does give single jabs).

Don't the GPs report back though? Like I said, I have a letter for my GP to add to my DS's records and it's recorded in my red book. Having said that, I got a letter from the PCT saying that they didn't have a record of him having any jabs beyond the first two sets so I have no faith in the system at all ...

Very interesting re autism yurt and that you think it was triggered. My DS has only just been diagnosed with AS but I don't think there was any particular trigger - he's always been the way he is.

Sorry, totally off topic

The system is chaotic - the documents I get from the NHS, telling me how many jabs the DSs have had, bare no relation to what I know has happened - so even if you want the jabs, you can't win. You have to keep phoning to make the appointments.

bear, bore no relation.. ?

Pagwatch, I have felt myself well up at the thought of the changes you saw in your son. I don't mean that to be condescending, but I think it must be so much worse to see your child step backwards, than never stepping forwards, if you know what I mean.

FWIW, OP, I think you have absolutely done the right thing.

I agree with Yurt that there are many roads to ASD.
When I talk to other parents we all have very different experiences. many talk about realising very early, others about failure to reach milestones and a few ( like me) with agressive regression.

I tend to think that parents in general are very thoughtful and honest about their childrens development.
which is why it kind of pisses me off when I get the 'oh I am not sure about the regression thing. I think parents didn't realise until about the time of the MMR. Its just coincidence'
I read that one a lot.
Pretty offensive when you think about it.

My GP was adamant that DS2 could not regress until he saw the footage and ( his own) developmental milestones report
then it became a 'new syndrome'...hurrah!

One minute I was a deluded liar- the next a trail blazer

well done me
well done DS2.

His gut going to hell at the same time apparently remains a coincidence though.

lou
don't worry. I don't feel condescended too
It is certainly hard because at 20 months we had all met each other IYSWIM. he was a person. And then he became a whole other person.
the hardest bit was DS1. He had a playmate and then sufddenly he didn't. i have photos of him just holding a sleeping DS2 - his face covered in scratches from where DS2 would attck him when awake. He would hold him when he slept because it was the only time he would let him.
But DS2 is a loveley boy and he and his sibs are very close now.
Ultimately it is just like any other grief. you come to terms with it.

pagwatch, I have no doubt DS2 is a great lad. The great thing about children is that they are so adaptable, and can accept that things have changed so quickly. Sounds like DS1 is pretty special too!

spicemonster - I;m just back from a very very interesting conference. Something that struck me was a talk where they divided autism into 2 main groups (although there would be lots of subgroups with those). One group had autism caused by many genes- if you looked at the families there was either autism/AS or traits in the family tree repeatedly.This matches something I've noticed for years in lots of families where kids have AS/HFA.

The other group seemed to be matched to one gene (although different individual genes). There was no family history of autism or traits - and in that case they seemed to say (iirc) that it was more likely to be a single gene that could then be affected by a trigger.

Of course big oversimplification.

I also went to a number of the talks on immunology and there were some mentions of having a susceptible gene (as mentioned above) then something like a maternal infection when pregnant- which would affect the developing foetus' immune system. A later trigger (and 'the dreaded vaccines' were mentioned as one potential trigger) and you're merrily on the road to autism.

Again a mass oversimplification - and probably partially remembered. But interesting.

There was quite a bit of follow on from this research on the immune system in autism at the conference.

IN ds1's case he had some weird things happen right before his regression. First a mole he had went very crinkly for a number of months. It was enough for us to see a dermatologist who wasn't sure what it was, but said it had become more keratinised. It then swelled up and started leaking a white fluid, then ds1 became covered head to foot in blisters. This all became very nasty and infected. Swabs were inconclusive but it was diagnosed by a specialist as eczema herpeticum (when eczema becomes infected by the herpes virus) and was treated aggressively as this can be fatal. Then he regressed. His paediatrician did say this was likely to be the trigger for his regression - so I find it odd that a viral infection that is naturally caught can be so easily accepted as the trigger, whilst one that is artificially introduced can be deemed to never be involved. I do think the numbers of post MMR regression are small, but the people I've spoken to who link it have very clear stories, which are different from others. And having observed a regression myself (which has been accepted as such) I don't think it's that difficult to spot. One of the mum's I've spoken to had a child who regressed when they were almost 4 anyway and it's hard to miss that!

In ds1's case the weirdest part of his regression was that he lost sounds rather than words. So when I watched his baby videos again I was stunned to see him at something like 11 months - we were playing with a snake and he was saying 'sssssss'. Then in the bath with ducks and he was saying 'kwa kwa kwa kwa'. Aged 9 he cannot produce either of those sounds at all. So whatever else the virus did it must have buggered up his motor system (he tries to talk etc now, he just can't).

sorry lost sounds rather than just words. He lost all his words too- but the sounds never stop surprising me.