Delaying vaccinations due to autism

[WorriedaboutThe]

I have 2 dc with autism. Both present in a similar way for certain things. My 6 y o was late with vaccinations as reacted so terribly to going to the doctor surgery . Traumatic meltdowns and physical symptoms so we did the 8,12,16 w vaccinations but the 1 year and pre school ones were done at 5.5 years (after we had done a lot of work about it and he was able to understand a little more. In that time we relied on herd immunity temporarily. The gp agreed with us (she has now retired)

we are now in the same situation with our younger child although her meltdowns are even worse. The new gp is not agreeing and we keep getting texts and calls saying we need to book catch up appts. I’m not anti vax Im just delaying. We live in an area with high uptake of all vaccinations and dd isn’t at nursery etc (we home educate eldest too so it’s not even like germs are being brought home via an older sibling). I’ve explained to the gp that I can’t risk a severe meltdown (in the past they have resulted in seizures and other physical manifestations that have caused hospitalisation and further trauma ) I just want to wait a bit but the gp is pressuring me - can they actually take this any further and force us or am I still within my rights to delay ? As far as I can see researching online it’s parental choice ?

Yes my dc seizures are definitely the fear/meltdown . We’ve had investigations and all fine but the meltdowns are triggering this response and it’s horrific I’ve never heard of anyone else having the same did it improve with time?

So they are used to being in the setting for those tests so surely the sensible approach would be to arrange to be vaccinated there.

why is the vaccine any different from the other tests?

If it is literally open the car door and needle goes in, it is all done in seconds.

They aren’t ‘used to it’ at all. We were taken to an and e and they were seen then during these episodes . It wasn’t a separate appointment that they somehow managed

We're the severe meltdowns and seizures after the 8, 12 and 16 week jabs?

@WorriedaboutThe

The trick is distraction to avoid the meltdown, focussing on something else. Obviously not 100% effective but I learned to read the signals so i could step in before she lost her ability to control herself. The good news is the frequency did reduce over time especially by the teenage years, you could generally prep, reason and bribe to prevent the meltdown. With medical procedures I just outright bribed with chocolate, she had to have quite a lot of procedures due to the seizures (ended up being caused by panic attacks rather than epilepsy)

No they were fine for these ones. Ds had one meltdown when we attempted the 12 m ones so abandoned after the mmr.

dd has had baby vaccinations fine but meltdowns at other times so we made the decision to postpone hers

Were*

To answer your original question, they can't force you.

yes we’ve been told it’s panic related 😞

I’ve never been anti vax prior to Covid but now I am seriously considering not giving the MMR to DC when they turn 1. Ok for the MenB and MenC.

I may pay privately to have separate Measles, Mumps and Rubella vaccines as I’m not too happy about the combined one.

I was also very put off by my baby receiving so many vaccines (against 8 different diseases) on the 1 day at 8, 12 and 16 weeks. Seems a lot for their little immune systems to deal with. But I guess it would cost the NHS too much to spread them out more.

@FannyChmelar - the single injections are no longer available at all I am afraid. Not even privately.

I do think from reading this that some posters think the OPs children just get a bit upset and screamy. They have seizures which land them in hospital.

The MMR is safe for the majority of children but like all vaccines there can be adverse effects. We have a history of this in our family as well, so I approached this particular vaccine with caution and have decided to delay.

Seizures in response to stress are experiencing by many epileptics, though some are more triggered by light, hunger, heat, fever, noise, etc. You need a sensible nurse and plenty of time and possibly to accept they aren’t going to like it but they are going to do it. Lolly, numbing cream, headphones and a video, big hug facing away from prep with arms pinned strategically, under dressed so arms are cool and don’t have to be stripped to do it. You are saving them.

I’m sorry you have to be braver than other mums. It IS harder and so much of what we do is. Fight for the strength to give them the safety the vaccine provides. If you can find friends in the same boat because people don’t get it. An epileptic who has seizures tripped in this way would be very vulnerable if they caught one of the diseases they need vaccines for.

Oh no! Thank you for the info. This is disappointing! Will have to have a serious think about what to do.

"I do think from reading this that some posters think the OPs children just get a bit upset and screamy. They have seizures which land them in hospital."

But then you need to consider which part of the vaccination process is causing that level of distress and see if you can change that. I think the assumption that it will always get easier as the child gets older is wrong.

In answer ro your question obviously you can't be forced to vaccinate your kids what do you think their going to do come round your house knock you out kidnap your children pin them to the ground and inject them. I think you need some help with your anxiety

It might not be the process - seizures are a rare side effect. They were in my family history, in fact, although distress will exacerbate this of course.

That’s interesting. I have a history of family members having adverse effects from vaccines too. We seem to be that 0.000001% of people it happens to. The flu shot that had the H1N1 component (2009) brought on polymyalgia and that has since been linked: www.ncbi.nlm.nih.gov/pmc/articles/PMC7002008/
Squalene was identified as the culprit in that adverse effect and since this was present in both the Pfizer and Moderna Covid vaccines, my family decided against them.

What has her peadiatrian suggested? They will have experience of similar and be able to help arrange for play therapy etc as needed to help.

The nurse came to my cousins home for his 2 autistic children. I understand all surgeries are different, but may be worth asking?

I do see that home is a safe place, but I think you need to come up with a neutral place where they could be done and then talk to the surgery about getting a nurse in civvies to come and do it there.

You will have to live with it if they become sick, and obviously that’s expensive for the health service.

That is your child, you do the consenting not the Gp.
They cannot force your hand.
You know what is best for your family. You are making an informed decision.
Your GP gets paid for the ones they give. Just keep ignoring the messages and decline them.
When your baby is emotionally developed enough to understand, continue to do what is right for your children.
The pressure will come from every direction when it comes to how to parent your children. You will never be right for anyone least of all companies that make money out of your children.

No. They can't make you vaccinate your children at any point. You keep getting Reminders because the system is simple and will just keep sending out Reminders until someone presses a button somewhere. You could ask to be removed from the Reminders list.

My ds is also HE and we get his vaccinations through the vaccination team (school age vaccination service). You might find them more reasonable than the GP if your local area has this service.

With regards to what is causing the distress, is it the GP surgery environment? The pain/sensation of the needle? Etc

You could ask (for the future) if there are quieter times you could come on for a vaccination, maybe when there are fewer clinics so less people and noise etc.

If its the sensation you can buy elma cream which numbs the area but you put that on about an hour before hand. I've also bought a shot blocker which you hold to the skin and it confuses your brain so you don't feel the actual needle.

My ASD ds is fine with needles. It's my NT dd who isn't. She hasn't had any of the covid ones as a result.

Get some actual valid scientific information would be my advice. I bet the OP would love to be able to vaccinate her child as easily as you can.