OMG oh my god

[Jimjams]

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

Buggeration buggeration buggeration.

OMG....OMG....OMG.....NO!!!!!!

When J was a toddler I refused to let him have his MMR because I was unsure about it...to cut a long story short...he suffered with repetitive ear infections and a really nasty ezema type rash....GP prescribed Augmentin.Ear infections and tummy trobles lead the GP to refer J for lactose intollerance testing....this came back positive....so J has been lactose free since age 2.

(The ear infections have never cleared up....glue ear...grommets....still infections....next stop washing his sinuses out...but he reacts badly to GA's so I have put this off.)

J had a particulary bad ear infection when he was 2yrs and 7 months and I took hime to see the GP. Whilst getting yet another prescription for his Augmentin the GP convinced me to let J have his MMR......

That night J was rushed into hospital with a raging temp. He was delirious and convulsing. The hospital told us that it was either a reaction to the MMR or his ear infection...or both!!!
He was put on an IV drip of Augmentin for 3 days....

Within days of J coming home we noticed he was very withdrawn and not the happy little chap he been...within 3 weeks J had stopped talking and was developing some very bizzare behaviours.

Within 2 months of J having his MMR he was refferred to the SALT dept for assessments......and 7 years later we are still waiting for a DISCO assessment for ASD....

Hubby and I, along with several family members have always said that the day J had his MMR was the day we lost him....

Like you Jimjams, we have watched videos of J when he was younger. His 2nd Birthday video shows a happy babbling toddler laughing and playing with his friends. We had a magician and J was so excited. He was dressed in a Woody costume and was soooo happy......where's my baby gone?....I miss him sooooo much....

OH GOD I'm crying now....lack of sleep again...sorry.

Bloody hell.
I'm so sorry. This is clearly huge. Should other people contact the researcher?

Just read more on this thread -ds2 (speech & language impairment & some fine motor delays/poss. mild dyspraxia) is on this AB at the moment to clear up an ear infection. He has long history of ear infections & co-amoxiclav tends to be the AB that clears them up. genetics & environment (& age?) must play a part but this AB connection is so worrying. ds2's birth brother (adopted by another couple) also has history of ENT infections & speech and development problems (poss. ADHD)and we understand was constantly on ABs

tamum- the ear infection thing is just something that has been noted about one group of autistic kids.

oops- autism so obviouly has multiple causes- and I suspect in ds1's case a number of factors may have given him a series of hits to get him to the severity he is today (or even to have made him autistic in the first place). The metabolism of autistic kids is off the wall - often (although having said that we've just had a big test run on ds1 and he wasn't too bizarre). I get so cross when studies say MMR can't be involved and then look at population numbers- as if anyone is actually suggesting that MMR is responsible for the increase.

The HV came round to see ds3 today. She took out the guide to immunisations and said "I have to give you this" then laughed an said "I take it we're forgetting it for the moment then".

I really think people are getting too worried about the stuff in this paper. This paper really proves nothing - without proper controls the study is meaningless. It makes me so mad that stuff like this can be published and then upset and worry so many people as it has done here.

There may be a connection, there may not - obviously I don't know, but honestly having read the full paper I don't think that changes anything. It is really very poor science.

Jimjams, I don't understand what you mean about the MMR. Based on the population studies I have never seen any reason to think it involved. Obviously I am missing something??? Do you mean it might worsen already existing autism rather than cause it?

And that in turn makes me mad Saker .. I am not a scientist and have never claimed to be (I did o'level biology but don't think that counts )

I understand the rigours of scientific experimentation but beleive, quite strongly, that there are certain areas where a 'control group' is not acceptable, there are certain results which need to be studied on a person by person basis .. extrapolation to something that is significant statistically at a population level by its very nature can ignore quite a large number of people who at grass roots level can be severely affected

at those grass roots levels I, for one, believe that anecdotal research means a heck of a lot more

probably makes no sense .. but my hands are hurting now so can't continue spouting off

jimjams, as oops said, it must be so hard to be bombarded with all this maybe stuff. I am really sorry this research can give you no firm answer, just more to worry about.

(Sends a shiver down my spine when I think of all the drugs my ds1 has had, from babyhood, on account of his recurrent ear infections)

No what I mean is that the population studies say "oh MMR cannot be a cause of autism because - blah blah blah". What I mean is that they are testing the hypothesis that the rise in autism has been caused by MMR- and when it is found that the rise in autism does not appear to be linked they then conclude that autism can be triggered by MMR. In fact no-one believes that MMR has caused the rise in autism- not now. People like Wakefield, Shattock et al now reckon about 7% of autism cases have been triggered by the MMR. Far too small a number to be picked up by a general population study. Wakefield etc continually repeat that they are looking at a sub-group within the autistic population (and those with autistic enterocolitis have differences- a specific gut disease for starters), but this very important point seems to get missed.

I'm not upset by this study. I can see its preliminary. We've always said that DS1 regressed following his illness- I've said it on here lots of times. It doesn't make much difference whether the cause of that regression was his treatment or the virus itself or even if it was a temporal link. It doesn't reallly matter whether he was already autistic and this increased severity or whatever. it doesn't actually make the slightest bit of difference to him. However I will be avoiding co-amoxiclav for ds2 and ds3. Life/death situation with no alternatives- they can have it- otherwise we'll use something else (I already avoid antibiotics like the plague anyway - still feeling poisoned from my IV ones tbh- so nothing has really changed).

durr should read they conclude that autism cannot be triggered by MMR. They're testing the wrong hypothesis.

This is an article concerning recent evaluations of the Danish study which purported that MMR was not linked to autism. Now three different researchers have claimed the evidence shows otherwise. I researched the new information and used it to demand singles for ds. article

Twiglett, I?m sorry but you can?t say that there are cases where a control group is not acceptable. Otherwise you can just make up anything. I could believe that the rice I ate for dinner yesterday made me ill, but if no-one else who ate the rice was ill then most people would agree that it must have been something else that made me ill. The hypothesis in this paper is that these children had augmentin and that caused them to develop autism. If that is the case there should be significantly more children with autism (believed to have developed later than birth) who had had augmentin than those who don?t have autism. For all I know it may be true that there are, but they have not even tested this in the paper and that is poor science.

Jimjams I know you have often said that Ds1 regressed following his illness and I am not trying to suggest otherwise. Just that I don?t think this paper is particularly helpful in clarifying the reasons why and quite a lot of people on this thread are now worrying about antibiotics etc based on this press release ? that?s why I felt like I should emphasise that the actual paper is pretty poor.

I see what you are saying about the MMR, though if you take that view then it makes a link more or less impossible to prove. Also am very wary about Wakefield?s motivation since having heard that he patented a single vaccine before beginning this research. Also I have never understood why he is so convinced that the single vaccine is safer.

In terms of antibiotics, I agree they are overprescribed in general, and that causes problems anyway. My dh is a GP and he says that there is actually no evidence that using antibiotics for ear infections works (apparently in Holland they don?t use them much and have very similar results) ? so I think they can be avoided apart from in more serious illnesses as you suggest.

Incidentally my dh also said he thought autistic children were more likely to be prescribed antibiotics because they can be difficult to examine and the doctor then prescribes to be on the safe side.

Thanks for the link, Jabberwocky - interesting reading, I'll try and get a look at the individual studies. Interestingly, in that article, Wakefield does appear to be claiming the increase in autism is due to the MMR.

I took his comments to be more in the line of careful criticism of the study techniques. He's taken so much flak about everything he says it seems. Anyway, definitely look at the three evals. Very interesting reading and, IMO, convincing.

Ouch. Only just picked up on this.
Sorry to hear you're going through all this at what must be a pretty busy time for you Jimjams.
I had thought the apparent high incidence of ear infections in autistic children (our AS ds1 included) was linked with general allergy stuff - isn't there also a higher rate of eczema? Gloppy, mucousy ears perhaps more likely to get infections?
As a GP I have prescribed countless courses of antibiotics to children with ear infections over the last 10 years, but the trend now is clearly against this, and we no longer have to persuade people that it's OK not to have them - a HUGE change in a relatively short time.
We are also under pressure now to prescribe simple amoxycillin rather than co-amoxiclav or augmentin, but this is (currently) because of the development of resistant bugs and high price rather than any perceived danger. Strangely, it has always been felt that children taking augmentin seem to get fewer gastrointestinal side-effects than adults do.
Augmentin duo was always difficult to prescribe to little ones as the dose was worked out by body weight.
Given how popular this antibiotic has been over the years, I find it hard to take this research too seriously at the moment. I'm not a pharmacologist, but would have thought that any toxic effect would need the clavulanate to have accumulated over time, perhaps with multiple courses, and would be less likely to result from a single short course?
Ds1 had it at least once I know (and the awful thing is I can't even check his GP records because I often prescribed it for him myself rather than taking him to his proper GP) but looking back he has always been different, and I can't put my finger on any particular turning point.
Sympathise +++ with Jimjams and others who now have yet another thing to agonise about, but I would be interested to see some more robust research coming out before a potentially life-saving drug is blacklisted..
Is this going to hit the Sundays, I wonder?

Saker if you go to Brian Deer's website you can have a look at the patent application (or at least bits of it selected by Deer). It's quite obvious to me that the patent application is for a product which would be used in the treatment of children with autistic enterocolitis. To portray the application as being for a produict that will rival the MMR is a rather large leap. I emailed Brian Deer ("it's that simple" as his website says) asking him how he had drawn his conclusions from the patent application but he didn't ever reply.

You won't ever prove a link that iosn't there(!) ie that its responsible for huge numbers of autism. However if you look directly at the kids and listen to the parents (shocking idea I know!) you can get a better idea. When Wakefiled has looked directly at the children he has found a) a novel gut diseases, b) vaccine strain measles virus in the guts and c) vaccine strain measles virus in the CSF. (wand the lengths he had to go to to get a sample of CSF and then get it back to the UK is like something from a Hollywood movie- completely ridiculous). A friend locally (her son is in ds1's class) is fairly typical of the MMR group. Given MMR, 24 hours later huge seizures then regression. Her paed has said they'll never know for sure but it is likely the MMR was the tirgger - on the quiet its not such a barking idea amongst the paeds etc of the country. See onlyjoking's post in another recent thread.

I haven't found that ds1's inability nto be examined has correspoonded with antibiotic prescriptions really. He hasn't been prescribed one in 3 years and over that time he has becoome impossible to examine. However my GP now very rarely gives antibiotics anyway. He was always examined before receiving them. (actually except the augmentin duo which was consultant prescribed over the telephone but the GP had examined him- actually then t he didn't really need examining as people were stopping me on the street to ask what had happpened to him.

jmb- I think the allergy link is the inflammation one. I did read a very complicated and hard to follow article in the autism file once which went into it all.

Of course there's that woman in the states who has linked dtp to ear infections- although I know nothing more than that - never read much about it so have no idea how researched it is.

oh and I shoould mention d) that when you talk to the parents of children whose children regressed following MMR - their stories are generallly different - many have a very clear pattern of very dramatic changes (more dramatic that ds1's regression- which was still fairly obvious). startting within hours and certainly days of the MMR. When I've heard these stories they stand out as there anren't very many of them- the descriptions they give are unusual. Whilst many parents may not notice at the time (hence this idea that we're too dim to see anything until 18 months) we tend to be pretty good in hindsight (so in my case- "oh that's why he stopped poutting his feet on the grass- can't believe I used to take photos of him and laugh at him), When I saw him stopping putting his feet/legs on the grass at 14 months I didn't think "OMG he's autistic" but once we worked out that he was I realised why he'd hasd that behaviour. A friend from here took her third son to the SALTs at 8 months and told them he was autistic- they told her not to be so daft- but she knew as she'd seen it before in her second son. He's now diagnosed with semantic pprgmatic disorder (so waht she was recognising was subtle and realted to autism). OOf course these parental stories are anecdotes not sciencebut emotional or not should be enough to challenge the belief that autism is caused by ABV (anything but vaccines).

The mother who recognised something in her 8 month old doesn't think vaccines were involved by the way- just using her as an example of parents knowing if their children are different.

Foor the record I have no idea about ds3 yet. Although he did try and reach out to touch a toy on his babygym yesterday (good - Davros knows thats a good sign).

And so the debate goes on...
Well, I phoned DD's GP yesterday who was incredibly sympathetic and prescribed a different antibiotic and suggested that we try and leave DD to recover without antibiotics if at all possible. DD's ear much better today so going to 'wait and see'. She certainly seems in a lot less pain. Have written to the practice manager to arrange to look through DD's notes. It may be a small study and one without a control group, but this study certainly rings major alarm bells with me...

Jimjams at ds3 touching his baby gym!

glad to hear your GP has been helpful JakB.

have you tried homeopathy for repeated ear infections btw? Sort of thing it can be good at (thinking about it ds1 hasn't had a single ear infection since we started homeopathy 3 years ago- not saying its linked at children do often grow out of ear infections).

My friend swaers by hopi ear candles. Her quack recently persuaded her to give them a go with her baby. She said it was a nightmare as you have to do it whilst they're asleep and try and avoid setting alight to the entire room but she said all this gunk poured out of his ear- he was so much better the next day she chucked the antibiotics down the sink (she hadn't started the course - had been given them as was trying to hold off using them).

as someone who does Hopi ear candles on my DH they are fabulous .. but I could never do them on a baby .. its far too tricky getting the pressure right and you need someone to say 'that's ok' or 'that's too much'

it did sound rather dangerous twiglettt!

Saker you may like this link from Andy Wakefield. talks a bit about people testing the wrong hyptheses

The Th1 th2 stuff he touches on is interesting as well.

and if wakefiled is correct I guess thimerosil could have been ds1's first hit (which given the mouse paper- which did have sensible controls! and our family hsitory is quite possible) and the herpes virus itself could have been his second hit. And who knows where augmentin comes into it all???

Oh Jimjams, hadn't seen this until now. So sorry. Don't really know what else to say

this is for saker - bit broad brush (and complicated!) but good summary of how weird metabolically autistics are. - and why only a subgroup of the population may be at risk from MMR ( or wild type live viruses come to that).