Help- DS3 HAs to have MMR booster, really nervous!

[PeachyHas4BoysAndLovesIt]

There's a child at school with cancer and they've asked us to have the booster. We will do it, I'm not risking a childs life for anything.

But I'm really nervous as he did regress after the last one. Words of comfort please? I know it's not going to change anything- he's asd, he's lovely whatever. But still...

I do think the child should be in school- apart from the fact that the childs life is torn apart at the moment and he needs to be with his friends, its quite possibly the onl;y break the poor parents get at a devastating time (My uncle ended up in psychiatric care after my cousin died from leukaemia, i know too well what the effects ca be).

Besides, i expect parents to make allowances for the ds's, so have to pay that back.

interestin that a later jab provides more immunity, ds3 had his very late.

ds3 has had many regressions but is doing so well atm- SALT has agreed to provide weekly salt and train his 1-1 and me to do daily sessions, so he can stay in school (the place has improved off the scale since new head took over, thet're paying to make his 1-1 up to full time!), we've even got him almost dry (he cant say if he is wet and will jusy go, but if you hold him over a potty hourly you cam minimise that to one accident a day). so i dont feel i can take risks atm.

yurt- ds4 just been dx'd with same casein into as ds1 and ds3, will be very interesting to see what happens! fortunately he bf's well and i am now strictly dairy free, if e turbs out asd though i will be certain of a link in this family (single jabs a defibite!)

I think this is an example of why they need to work much harder on finding out which children are at risk from vaccinations. But first they have to admit some are!

I would have no problem vaccinating a child who I thought was 100% not going to have a reaction, but I couldn't possibly vaccinate a child who I thought might end up with a condition as severe ds1's . That wouldn't be moral either. I know ds3 has all the pre-dispositions for autism - I've watched him deal with them, nooo waaaay could I risk giving him something that might destroy his chance of an independent life.

Peachy- I'm sure you do have a genetic link- but most inherited traits also have an environmental factor. Even simple genetic conditions such as PKU. (avoid phenyl alalanine baby is fine, have phenylalanine baby develops a learning disability). There needs to be more work on environmental triggers, but it's so difficult for people to work in this area as it's so political!

Oh my goodness, I'm so pleased I've happened to log on and see this thread. DS1 has many mild signs of autism and I'm certain his speech development stalled for many months after his MMR. His booster is due soon and although I was planning on doing more research before going ahead with it, you've all given me far more relevant info than I've gleaned in reading lots of medical articles.

Peachy, I sympathise so much, it must be a horribly hard decision for you to have to make. I hope they can allow you exemption under the circumstances.

My experience of MMR has been very positive - more speech from both my DS's (ASD and NT) shortly after the MMR booster in one case and the MMR in the other but I don't think that proves anything. At least I don't think I'll take DS1 (ASD) for a third bite of the MMR cherry to see if it will get him on further with sentences because I don't think that's where his problem lies.

I agree it is very unlikely that there is one underlying cause of autism as the spectrum is so wide and so varied but although the evidence from genetics is hard (although complex in itself as many genes are involved) , the evidence for any other factor is soft - whether it is birth trauma or an unknown environmental factor. Of course there are wide gaps in our knowledge of ASD so nothing can be ruled out but that is not the same as ruling it in.

I know there are environmental triggers- treouble is I can list so may... when ds1 and ds3 were baies wem lived alongside the a38, with ds2we were in a hamlet; theres the casein thing; ds1 and ds3 (n but not ds2 or ds4) had injected vitamin k (other two had oral(, then there's ds1's birth trauma, etc etc...

we'll never know and it would always be too late for us, but agree there should be some serious research.

i won't tell school regardless of decision- none of their business!

I suppose my point is that for the vast majority of inherited effects the expression depends on the genetic make up plus the environment. This is true of almost anything. So saying 'asds are genetic' doesn't actually rule out environmental effects.

Vast oversimplifcation here but a model to explain: So say you have an allele that means that your cell membrane are a bit ropy. You may well be fine. Unless you start eating gluten, or a certain type of casein (some evidence that casein from friesian cows is particularly dodgy). Your cell membranes are still dodgy (genetic effect) but the environmental trigger (whatever that might be) needs to cross those ropey membranes to trigger the condition.

Quite a few people working on autoimmunity in general are working on that type of model. Most think there are so many potential triggers that you're better off trying to fix the ropey membrane or whatever but we're perhaps a long way off that.

Having a genetic pre-disposition for autism doesn't mean you are guaranteed to develop it any more than having a genetic predisposition for lung cancer means you'll develop lung cancer (lay off the fags and chances are you'll be OK). It's difficult to work out what the potential triggers might be, but that's what we did with ds2 and ds3 - more critically for ds3 as he does have a leaky gut, and the same ear infections and eczema and sensory processing difficulties etc And hopefully its paid off.

Talking as a parent of a child with an immune problem - it is hard enough when they are really low to keep them isolated so periods when they can mix are a relief as it gives carers a break and the child some much needed socialising. I think it is only reasonable of the school to advise parents of this childs problems and for parents to try and be aware of the issues to try and give this poor child a chance of a normal life between treatments. I have read alot about MMR and ASD and am unconvinced there is a link (problably going to get a lot of reaction for that comment but its what I think and others are entitled to their opinions)

I've had all the 'triggers' for autism - pitocin, epidural, Vitamin K, alcohol, breathed in mercury every day etc but I'm not worried about them and do not think they triggered ASD in DS1. It is true that a human being is never a closed system and that external factors will always operate. I do agree that in some cases, genetic susceptibility factors and environmental factors can interplay to produce a shared outcome . On the other hand, having brown eyes or having Downs Syndrome is not triggered by the enviromment. It is interesting to have these debates because so often personal feelings come into it and people may feel they are being attacked or undermined if different points are made - obviously I don't know anything about someone else's child. Let's hope the friesan cows don't turn into velcro cows - whatever they were!

i purosely did not comment on the vaccine issue. dd1 has had all jabs, dd2, ASD traits but not ASD if thats possible, some speech delays etc etc, has had all but no booster. we are trying to decide if she should have the booster or attempt to draw blood from her to check to see if the initial jab has taken. dd1+2 suffer quite bad allergy type reactions with flares of eczema increased wheezing etc, dd3 the same as dd2 as too young for the booster. dd2+3 all had their jabs later and more spaced out than recommended.

All of us have Flu jabs yearly to help protect dh who caught the flu and almost died.

we are currently debating whether or not dc#4 should have the chicken pox vaccine as it could prove deadly to dh.

there is no way i could drag my kids out of school, as one headteacher suggested, when i approached the nursery about asking if it would be possible to send out a courtesy letter like peacheys school has done.

Actually the environment can change eye colour - although rare - some drugs can do just that. It is more usual than not for the environment to have a role in inherited conditions. Especially something as complex as autism which involves many systems.

I've had lots of triggers for autism as well, but don't have the genetic makeup for that to be a problem.

Downs Syndrome is completely different- it's arises from non-disjunction - it's not about expression of genes, and the environment can affect the expression of various 'symptoms' of DS as well.

Of course there will be cases where the environment has played a minor role. You can see it in families where the condition runs through the family- with uncles who refuse to talk to anyone, cousins who collect pictures of telegraph poles and the this generation diagnosed with AS. That's one subgroup who may have a totally different condition biologically than other types of autism.

But when you have a family history like my boys, with no autism anywhere in either family (and I have 22 first cousins, my family is huge) but lots and lots of autoimmune and atopic conditions (MS, type 1 diabetes - lots of type 1 diabetes, severe eczema, psoriasis running right through the family generation after generation) and your child regresses following a viral illness (accepted by the pros - it's in the dx letter) then it does begin to look as if the most likely genetic influence is something to do with the immune system.

In 2006 some gastroenterologists published a paper describing a model for the development of autoimmune conditions (mentioning type 1 diabetes and MS) that is very very similar to various autism researcher's models for the development of some cases of autism. It was that you have a leaky gut, then environmental agents pass through and trigger the autoimmune condition. I suspect its a model that may function quite well at some level in our family. Certainly applying it in our family seemed to stop ds3's disordered development its tracks resuming normal service.

Of course it won't apply to every child. But looking at an indvidual child's family history can give you a hunch of the sorts of things that might be going on.

sunshine
of course you are entitled to your opinion
But the issue is complicated for those of us who are certain that our childs difficulties were triggered by the MMR.
My DD was at nursery with a boy last year who had immunity difficulties post cancer treatment.
I had many conversations with the nursery and would never have done anything to compromise that childs health but that would not have included giving DD the jabs. I would have pulled her from school first.
To me her avoiding these jabs is a significant , nay vital, health issue.
Other people views have nothing to do with it. They have not investigated, studied and for that matter supported my son for the last 11 years.
so your opinion is valid and i totally respect it but it does not impact mine iyswim and mine ( and dH's) should
surely be the only relevent ones.

sorry - posted early
...
I would never do anything to compromise another persons health. But neither can I in conscience give my daughter a jab which I know will cause her significant harm .
Tis so difficult.
Our situations should not be in conflict - we both just love and care for our kids.

I'm sorry
3rd post in a row and still incoherent.
I'm going out now and will withdraw from this thread as i am far too emotional about this issue and frankly gibbering like a fool.

( I still find the MMR discussion so difficult at times. Not sure why. Comes and goes in waves. I think its because I have to defend myself whenever it is raised. You know, no I am not making it up, he did regress visibly. Yes I did research it and the conection makes sense. Yes I do care about other kids. No I don't want to be responsible for a measles epedemic. Sometimes I can handle it. Others I can't. Today is obviously a 'can't' day)

I hope I haven't been too rude and upset anyone.

An hour in the garden will clear my head.
Thanks for your patience all.

I was admiring your response pagwatch.

I know exactly what you mean and feel the same. DS1 regressed after a virus - and yes losing words and speech sounds and totally changing eating habits is fairly impossible to miss. When I looked back at early videos I was shocked by how much he was doing. IN the years when I couldn't bear to watch the videos I had underestimated how much he was doing, not overestimated.

Wakefield's theory is actually about exposure to viruses - there's been some work done on herpes & autism which is the one that 'got' ds1. Like you I'm just not able to expose ds3 in particular, and would prefer to not expose ds2, to a virus artificially when there is good evidence that it plays some sort of role in autistic enterocolitis. Even if it isn't triggering the autism I'll happily leave the enterocolitis alone.

BTW I have spoken to someone recently whose daughter lost speech aged 4 following MMR, so if you saw a visible regression just believe it, act on it with subsequent children and don't defend yourself.

After MMR threads I find an hour or chatting with ds3 helps.

Pagwatch you made perfect sense

as did sunsine snd misdee also

which is why it's compicared

a bit more for me perhaps because its booster and he could well be immune so just jabbing seems a silly risk without at least finding if he is immune, before this thread i didnt realise that could be done

also am aware that ds3 doesnt mix with anyone other than cousins, brothers and schoolmates- if everyone took this poor lad seriously and immunised then thoretically ds3, as the only utistic child in the school, should be protected by that as nobody to infect him iyswim

i know ours is genetic asd from my extended family as yurt says, evident throughout mine. i've always put casein down as the culprit- ds1 was only exposed for a few weeks before being ut on soya for eczma; ds3 was dx'd but prescribed wrong formula and took it for 4 years- hence imo severity. i would put money on ds4 being susceptible as has casein gene, hopefully a bit through my milk wont trigger: if it does it does, its a gamble we took having him.

(ddnt mean more complex for me than others- badly worded- meant to me the complesxity is added to....)

oops

peachy- I think the casein thing is specifically the normal friesian cows milk (well depends on sensitivtiy) We switched ds3 from cows to goats and it made a dramatic difference. Goats is digested down more easily than cows but also has a different type of casein. I would imagine that human will be best of all. hardly any research to date, but more would be worthwhile in this area

i've been casein intol since birth, as a baby i screamed so much i was admitted to hospital to give my pasrents a rest! So I think we suffer from a more generalised intolerance, and across the family those who have that gene (cousins, cousins kids- all through) either have AS, ASD or often very severe eczma.

quite what is going on there i don't know, but something is!

goats milk i can tolerate moe of but not loads

oh that's interesting.....

Do look at digestive enzymes. Low levels of goats milk + digestive enzymes (littlies can have them too) might work.

If you join Treating Autism you can choose an enzyme book for free. There should be a link there to MandiMart as well- the most helpful places of UK enzymes.

Of course there's the soya option, but ds1 went weird on soya....

peachy, is ds4 gaining weight yet? have u seen cardio?

ds1 was on soya, complete;y rotted his teeth out, they are currently literally falling out of his head; his front adukt teeth were damaged too and snapped off. blinkin stuff!

i just take supplements and avoid stuff, but ds4 will need replacements so will look at that ta

misdee- he gained 2oz! hurrah! he has now got a noticeable wheeze though (damn) that hvpicked up on, so is seeing gp wednesday.

hv away on hols so won't hear about cardiac until after she returns

nobody seems too worried but everyone seems to pick up on a different niggle iyswim- weezing, purple feet etc.

being weighed tomorrow, so hoing he has gained a bit more.