If you decided to delay or to forgo MMR, how did health professionals react?

[usedtogotomars]

Just wondering about this (and haven’t yet decided) - do they respond in a way that respects your view or do they try to persuade you to have the vaccinations given to your child?

bruffin it isn’t ‘just’ epilepsy but severe and ongoing disability leaving a now adult male functioning at a level less than a 2 yo.

Non verbal, incontinent, reliant on wheelchair.

But you don’t know that it was the vaccinations that caused what your relative suffered (and the knock on effects on those who care for him).

So on the one hand you have exceedingly high chances of saving your child from life-threatening diseases on odds that increase the more people don’t vaccinate

Versus

Exposing your child and other children to life threatening diseases in case something that happened on vanishingly small odds, and possibly in totally unrelated circumstances, might also happen to your child in equally small odds.

It doesn’t stack up from the perspective of your own child, and even less so from a public health perspective.

Both. It depends on the person you are dealing with really. Some will bring up the topic even if it is nothing do with the reason you are seeing them at an appt.

Actually smit, we do, yes.

Dravets disease is not "just" epilepsy.

"Early developmental skills and behavior are usually reported as normal. However, following seizure onset, at around the second year of life, developmental slowing or stagnation becomes obvious in most patients (Wolff et al., 2006; Ragona et al., 2011). Behavioral disturbances with hyperactivity and autistic traits are frequent. The frequency of convulsive seizures seems to correlate with the severity of developmental delay, suggesting that Dravet syndrome might be considered as a paradigmatic example of epileptic encephalopathy (Wolff et al., 2006). Early onset of absence and myoclonic seizures appears to carry a higher risk of severe cognitive impairment (Ragona et al., 2011).

But Dravet's is genetic, not vaccine related, or is it?

I understand it's scary. I've always been very pro vaccine but even I find it difficult taking my poor defenceless babies in for them. Because you can't ever be 100% sure can you, even if you believe the science that tells you it's safe - what if it's not? I get that fear, I honestly do.

However, one of my twins contracted whooping cough in the nicu shortly before he came home, a week or so before his first jabs. I had the vaccination while I was pregnant and it worked for his brother but seemingly not for him (he had growth restriction, perhaps that's why - no idea). I had to live in a shitty recliner next to his bed for nearly two weeks waiting to see if he was going to die, trying to comfort him while he was coughing non stop and being almost starved, as his weight fell to below 5lb. I slept less than 12 hours the entire time, my milk supply crashed, I've never known pain like it. And that's with knowing I did all I could. If this had happened after I refused vaccines, I don't know how I would live with myself.

He also has an illness that makes even mild colds very dangerous to him. A serious illness like measles would be catastrophic. Until he hadn't his 12 month jabs I was terrified of non-vaccinated children and had no way of knowing who was vaccinated and who wasn't. We were effectively quarantined for most of his first year as he was too weak to survive any serious virus.if you do decide not to vaccinate, please be extra responsible around babies, and people in general - you don't know who has a weakened immune system, who's having chemo, who's been unable to have vaccinations.

perfectlydone
Yes it is genectic, but vaccines may trigger it, ( trigger not cause) but any fever will trigger the fits. As with all genetics, these mutations can spontaniously occur.
In Dravets the fits become more and more severe and cause brain damage.

tammy, that sounds absolutely horrific. I hope your poor DS is doing well now.

It sounds like a very difficult choice for you OP. It's very easy to criticise difficult choices from the outside and beyond difficult to make them when it's you personally. Good luck and all the best to you and your baby.

If you have a history of adverse reaction, if you have a logical reason to hesitate then discuss that with your GP

It's not an easy decision so actually the process of discussing it with your medical advisor/GP is useful. Its a decision you want to be challenged on because if you decide not to vaccinate you will worry a lot.

My conversations with mine were very useful and helped me decide what to do. You will get crap from people, some because they are worried for their own children, some because they have reason to be anxious and some just because they enjoy a bit of frothing. You will need to believe in your own choice and be confident that it's right for your child so don't become entrenched and stop listening.

Don't take the decision lightly. Go through the process because it's absoloutely right that you should be challenged .

The stuff about schools and nurserys not accepting you is mostly bollocks in my experience. My DC have never had any problems with any school, nursery or similar setting.

Thanks, Pagwatch

I understand from a PM someone kindly sent me that singles vaccines are available and I feel that measles single vaccine may be a good starting point. But I am worried that an attempt to discuss is may lead to a default of ‘of course your baby won’t be affected, the autism thing is a myth don’t you know.’

Singles are not safer

Then no vaccinations it is.

bruffin, yes, of course.
My understanding is that any fever or increase in temperature may trigger these really nasty, complex fits though, not necessarily a post-immunisation fever. And a preventable infectious disease can of course cause a fever, triggering Dravet's.

A really difficult choice for you, usedtogotomars, and I think it is really irrelevant what any of us would chose to do or think what we would chose to do (I, for one, have not walked in your shoes).

You need RL specialist advice.
As I said upthread, speak to your GP, make your case as you have done here and get referred to the relevant specialist in your area.

In the UK schools and nurseries have no right to exclude a child on vaccination grounds, this is different in the US for instance.

Can someone direct me to the robust cochrane reviewed double blind scientific studies that prove 'vaccine damage' in a statistically significant amount of individuals?

Because until I see that, I am sorry but as a hcp I will continue to counsel parents that the evidence for harm from preventable diseases is there and the 'alleged risk' from vaccines is not

One of the problems with single vaccines is purely practical: very often courses of vaccinations are not completed because it takes so many trips to get them all done.

And, as bruffin say, they are not shown to be safer.

How can you say it’s no one else’s business ? Of course it is. You put other children , some as yet unborn if you don’t vaccinate.

I chose not to vaccinate my son with MMR 12 years ago. Different reason but it transpired the whooping cough part of baby vaccine caused my son to have fits so bad we thought we were going to lose him. So I was obviously cautious after that, however it was never pushed by health professionals.

Because Layla health records are confidential. You may have an opinion, but your opinion doesn’t give you the right to access anybody’s health record. In other words your argument is a moral/emotive one not a factual one.

We deferred the MMR for my dd. My dss had aspergers and this was at the time of the Andrew Wakefield scare, and i was worried about the mmr triggering autism in dd.

She had it later and was fine - after I had investigated the single jabs.

Today, she would have it on time.

I am sure if you explain that you know the autism thing is a myth but you have another family member who had an adverse reaction to a vaccination which resulted in .. the hcp will help talk you through the safest way to vaccinate your dc. I understand that vaccines have changed over the years for examples, following a conversation about a reaction to egg that my dh apparently had with his vaccine. You need individual medical advice from a professional not a bunch on randoms like myself on the internet.

your argument is a moral/emotive one not a factual one

Just like yours then.

My children haven't had some vaccinations due to a family history if Vaccine injurys causing significant brain damage and early death from complications. All have respected our choice and when a certain vaccine recipe was changed (which omitted the responsible ingredient) they called us to let us know and they had that vaccine. If you have a genuine issue they will understand, if you've decided not to have the mmr because if reading horror stories online that have no basis I'm sure they'll be less understanding

Prepared to be flamed but I delayed MMR for my second, third and fourth children. I explained my reasons to health professionals and they were incredibly supportive. I only delayed by around a year though, with all of them receiving both the first and the booster dose well in advance of school. The fact that I was clear why I was choosing to delay, how long for and that I absolutely supported vaccination probably helped.

Still never going for flu jabs for any of us though. Just to ensure I get the MN wrath