3.5 year old autistic non verbal son has had a sudden behaviour change after vaccines

[Nataliewalsh89]

Hi, I’m going to apologise for the long post in advance but I’m desperate!

10 weeks ago my autistic non verbal son had his preschool vaccines, following these he got really ill 24 hours later he had a very high fever and didn’t move from the sofa for a full day in and out of sleep and didn’t eat, the following day he woke up without a fever but a completely different boy just overnight like a switch had flipped, since then he has continuous meltdowns from waking and through the night, he is biting me, smashing his head into the floor and walls , hitting himself in his head and face and seemingly can not tolerate anything this has been constant for 10 weeks now, before this he was happy child, quite chilled and would happily play in his own with his toys for hours and enjoyed going out and playing games with me, he is not happy anymore. I thought he must be in pain, I’ve had numerous trips to the hospital and doctors, where I’ve had to fight for them to look at him , all they’ve done is given blood tests and said there is no sign of infection I believe he needs scans and his head looking at, that it could possibly be inflammation on the brain or even an immune disorder but nobody will listen I’ve had to beg for a paediatrician appointment which I’ve got on the 28th of this month so I will be going with all my concerns then but I was just hoping anybody has had a similar experience and maybe has some advice, it is awful I’m not wanting to get up in the morning it’s screaming and self harm from the get go straight away in the morning
I don’t see how this is a coincidence it all happened overnight from him being poorly from his vaccines . He’s honestly a completely different child and it’s breaking my heart and I’m so depressed.
ive referred to all services who honestly I don’t think they know themselves and really haven’t been any support at all.
thankyou for reading 😩

The vaccines could be a red herring and he was already coming down with an illness. Strep throat can trigger pans/pandas and people say similar like its a totally different child.

I did think this but I took him to the gp and hospital who did bloods and found no trace of an infection or any indication that he was in pain. Although to me it is his pain cry
you’d think they would have given him a mri or ct scan but they didn’t just was told he was fine and to be on my way 🤬
but yes he’s completely different the meltdowns are constant and are often 3/4 hours at a time he will fall asleep from exhaustion then wake up again straight back into a meltdown

Sorry to hear this it sounds bloody tough. Agree that he may have been coming down with something and the unfortunate timing of the jabs/the fever response to jabs has triggered or compounded what was already coming. Similar happens with Type 1 diabetes - the child is always going to get it if they are predisposed, but it is usually triggered when the child has an illness that compromises their immune system, such as flu. Many millions of kids get the pre-school vaccines without this happening so it is unlikely to be a vaccine reaction.

Yeah I don’t think it’s the vaccines fault millions of kids have the vaccine and are fine I’ve had all vaccines and I’m fine and so is my other son, I’m thinking he has a compromised immune system maybe or nervous system and maybe the vaccines have triggered something that was already wrong with him.
he’s just hitting his head constantly and biting me which literally just happened overnight.
im hoping the paediatrician will send him for scans I really am

I would be asking them for an MRI and a lumbar puncture done under a general anaesthetic, it is an acute behaviour change with a definite trigger. It could be encephalitis, that can present with acute onset psychiatric or behavioural changes, there are autoimmune forms that result from the bodies immune response to a virus or a vaccine. Did you see a paediatric A&E doctor? If not then go to a paediatric A&E and push for a consultant review.

edendoratrust.org/

childbraininjurytrust.org.uk/2025/02/world-encephalitis-day-2025/

www.gosh.nhs.uk/conditions-and-treatments/conditions-we-treat/autoimmune-encephalitis/

this is my concern too, I did yes I’ve spent 12 hours in a and e twice I had to argue to be sent up to the paediatric ward, when I said all this too them they did him a blood test and checked for uti then referred me to community paediatrician but don’t have an appointment until the 28th, I’ve called everybody, I’ve self referred to early help who was no help I’ve exhausted all avenues my only hope is this appointment now, if it turns out to be encephalitis or an immune disorder which is what I’m inclined to think I’m going to absolutely lose my sh*t 😩

I’m not saying it’s caused by the vaccines I’m not an anti-vaxxer but the vaccines where definitely the trigger it’s too much of a coincidence not to be

If he’s already had investigations it’s likely that it isn’t encephalitis, which is incredibly rare in the UK. Also, his symptoms don’t fit.
www.chop.edu/conditions-diseases/encephalitis-children#:~:text=These%20include%20herpes%20simplex%20virus,toxoplasmosis%20(carried%20by%20cats).

Do you have videos of his behaviour before the trigger? I find videos very useful in getting medical people to take notice. Try to find some examples of before videos and then take some after videos in his home environment so they know his behaviour that they are observing is not just related to the hospital visit. Does he normally go to a preschool or nursery? If so could somebody there write something for you about his typical behaviour. Or are there any other family members who can attend with you to the appointment/hospital that will state that his behaviour has massively changed and the timeline. Two voices are often listened to more than one.

Also you do have a right to complain via PALS at the hospital you attended, get a second opinion or go to another larger hospital with a paediatric A&E. If you don't get anywhere with the next appointment I would complain.

www.patients-association.org.uk/getting-a-second-opinion

Have you checked his teeth with a Dentist? If you can get him there.

Hi yes I’ve been to the dentist to check his teeth , and I have plenty of videos of before and after to take to the appointment with me, fingers crossed it’s not encephalitis, I’m hoping it’s something that can be treated though so I can get my happy boy back, autism is a struggle and he had his meltdowns anyway but he was generally happy, this is unbearable the neighbours must think all sorts not that I care what they think, but whatever is bothering him I need to get to the bottom of it. The wait times for children with these struggles are ridiculous

It sounds like he is in pain somewhere. So hard when he can’t really tell you how he is feeling.

Does his behaviour improve after being given calpol or ibuprofen? Wondering if he is having headaches with the hitting of his head?
Is he drinking enough? Has had his eyes tested?

On the surface, suggesting doing something I've seen on a VET program, to your autistic child, may sound horrible, but I just linked a couple of things together. Have you tried slowly pushing down all over your son's body and seeing if he cries out or seems extra distressed at any point? I have been watching the program Bondi Vet recently, and when someone comes in with an animal that is "distressed" and crying randomly, the vets often try to get the animal reasonably calm and then try this to see if there is a high distress reaction at a particular point where there could be a broken bone or fracture. When you said he's been smashing himself on the floor and walls, I just wonder whether he could have broken or fractured a bone and whether he might scream out when you touched the right bit? Obviously if just screams, he can't show or tell you where he's knocked, but if he was say lying on his bed calm and you pushed on his leg or something and he screamed, that might tell you?

This is how people become anti vax….experience

It does seem like he’s in pain that why I’ve had so many desperate calls to people and attended the gp and hospital, they’ve checked his ears, urine, done bloods, he’s been to the dentist, he’s not had his eyes tested since he was tiny just because he simply would not sit and have it done he really struggles with anything like that, but honestly having your baby struggling this much and not being able to tell you what’s wrong is heart breaking..
would inflammation of the brain cause pain/pressure ? He’s hitting his head a lot and when he’s slapping himself he’s hitting his head, would this show on a blood test ?
the fact the hospital did not give him an mri is beyond me it really is 😞 I just feel so helpless
whatever the outcome of the paediatrician appointment is I will update here just in case there is anybody that ends up in my position because I’ve read every single article I think. I’ve emailed the autism institute and waiting on a reply for hopefully some advice from there.

How awful. Poor little chikd and poor you.

Could it be that the vaccine triggered an inflammatory response and it’s in his brain like it is for PANDAS/PAN (look up if you haven’t heard of this)?

Have you tried a child’s anti-inflammatory medicine?

Hi hamstersarce, what do you mean have you had experience with this ? I can tell you though that it’s no coincidence and another vaccine won’t be touching him until I find out what’s wrong

I have tried this yes I regularly do deep pressure massage for him anyway for his sensory issues, but he doesn’t scream out when calm and I’m doing this

I’ve tried neurofen regularly but it doesn’t seem to help, I’m thinking something in his brain or immune system/ nervous system

From what I can quickly read brain inflammation (encephalitis) is indeed a known rare reaction to certain vaccines.

https://www.mctlaw.com/vaccine-injury/encephalitis-vaccine-reaction/?srsltid=AfmBOorc_BdoFKJnzp3ndZOXWPB8eBJ2RZF0Kdre0I5WKDyC2oI695FJ

www.vaccineinjuryteam.com/blog/2024/may/rare-neurological-conditions-that-can-be-caused-/

Yes.

I would be pushing further too. You know your son and you know something is wrong.

my DD had a similar reaction after vaccinations at 14 months, hitting her head hard and regularly, constant meltdowns , fever followed by days of appearing well but continuing to head bang and then the fever returning. she was barely sleeping and seemed to be anxious and distressed all of the time. I was extremely worried and felt dismissed by the doctors. She started to improve after a month and is now back to normal. I can really appreciate how worried you must be about the length of time this has been going on for your son OP! I hope he feels better soon and that you have people to support & care for you while this is going on 💛

Not to dismiss a possible medical cause, but have you considered it could be a behavioural change from feeling unwell and then having a lot of medical appointments. Autistic people can be very sensitive to even slight changes in body sensations/routines. My autistic child had a complete behaviour change like this when there was a change to routine and it lasted for months and was very intense.