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 😩

That must have been terrifying for her and you. Thank goodness she is better now. What did the GP say?

Unfortunately the OP’s little boy has been ill for ten weeks now.

It definatley could be behavioural but I just feel it’s too much of a coincidence for him to completely be in so much distress immediately after the vaccines and falling ill from them and for it to be still so constant now but I could be wrong
he’s not sleeping either not that his sleep was great before but that is much worse too, I can’t just let him cry in his bedroom or anything like that cause he bangs his head and self harms so we are on the sofa at least that way I can’t keep him safe, he won’t wear a helmet or anything like that.
he went quiet around 11pm and I thought he had gone to sleep but he was smearing that’s why he was quiet 😩 ( that did happen before ) so shower and now we are downstairs, he will probably go to sleep around 4, he slept for 4 hours last night from 2-6 and then fell asleep for an hour during the day after exhausting himself.
it will be 11 weeks this Thursday he has been like this since the 13th may when he had his vaccines.
I just feel there is something wrong other then just Behavioral due to his struggles with autism and sensory ect, in the beginning I though maybe possibly he could need more sensory input or less, I’ve spent so much money on sensory equipment just in the hope it will help, most of the time you can see him trying to communicate with me what’s wrong and he can’t it’s devastating.
oh man my washer broke too the new one doesn’t come until Thursday and I now have a bin bag of teddys and bedding from his room covered in his poo, I hope all your evenings are going better 😂 got to laugh or I’ll cry and I’ve done plenty of that it’s got me nowhere.
just hoping this appointment ends with some testing and answers

Could you get him to a chiropractor? I know people have had success with babies who have screamed endlessly, something to do with the process of being born affecting their heads. Anything has to be worth a try!

It's likely that he's hit his next developmental stage, our DS was very passive as a younger toddler. Around turning 3 he started tantrums after previously being unusually calm and easily distratable in every situation, and some words followed a couple of months later.
It's hard work, but it's actually a very positive thing. He is communicating with you, he's no longer as isolated in his thought and not trying to communicate his needs. It's hard work, but I would be far more worried about him in your situation if he continued not to try to communicate his needs/wants or if he continued being extremely passive.

It may be that during feeling unwell something clicked in his brain that he could seek reassurance from you and show you how he felt with behaviours

As an idea for the current struggles, as he's in need of comfort and sleep, would co sleeping be an option? You may find that closeness at night helps him feel slightly more settled in the day and helps him get a bit more sleep.

You’ve probably thought of this but have you tried asking ChatGPT? It can help you with the best approach to advocate for your son at the very least but maybe it will spot something you haven’t thought of.

Sounds like you're having a terrible time.
I have never heard of such a drastic change from vaccinations.
I hope you find the answers.
Has anything else changed? Could he be angry about the injection?

It is very rare but can happen either as a triggered response to an underlying condition or, even more rarely, as a caused effect.

I’m think it’s a triggered response to an underlying cause like an immune problem but also a cause effect I’m pretty sure there some sort of brain inflammation m, does anybody know if the paediatrician will defo send for testing ? I’m so scared they also won’t listen

If your little boy is still not improving by 28th, and they still won’t take his sudden change of behaviour seriously (whatever the trigger/cause), could you ask for a second opinion from a consultant paediatrician under Clare’s Law?

Failing that, could you possibly see anyone privately?

How is he now? Perhaps before 28th make a diary and take videos?

Please know that this is just AI and I do not know if it is correct:

For a toddler with autism and suspected or confirmed autoimmune encephalitis in the UK, you should
consult your GPto initiate a referral to a specialist, likely a paediatric neurologist or a neurodevelopmental specialist at a dedicated unit like the one at Great Ormond Street Hospital (GOSH) or a regional neuro-immunology team. Key experts to seek out include paediatric neurologists, who can manage both conditions, and specialists in autoimmune conditions like those within a neuro-immunology team. Resources to find such experts include the South London and Maudsley NHS (SLaM) for complex cases and the NHS services at GOSH, which offers specialist assessment for complex neurodevelopmental needs.

Specialised Services and Experts

• Great Ormond Street Hospital (GOSH): GOSH offers a Neurodevelopmental Assessment Clinic for children with complex neurodevelopmental needs, including those with autism, providing assessment, second opinions, and management advice.
• South London and Maudsley (SLAM) NHS Foundation Trust:The Service for Complex Autism and Associated Neurodevelopmental Disorders (SCAAND) is a specialist service for children and young people with complex neurodevelopmental conditions and is recognized as a leading UK center.
• Research Experts: You can find experts researching autoimmune encephalitis and Autism Spectrum Disorder, such as:
• Paul Whiteley: Associated with 1ESPA Research in Sunderland.
• Ben Marlow: From Colchester Hospital and The Synapse Centre for Neurodevelopment.
• Ritika R Kapoor: At King's College Hospital NHS Foundation Trust in London.
• Other Specialists:
• Dr. Michael Zandi: At University College London Hospitals NHS Foundation Trust.
• Dr. Rajesh Pandey: A consultant in neurodevelopment and epilepsy at Sandwell & West Birmingham Hospitals NHS Trust.

How to Get Help

1. Start with your GP: Speak to your General Practitioner (GP) or the team that diagnosed your child's autism.
2. Seek a referral: Your GP or assessment team can refer you to a specialist or a specialist centre.
3. Consider Private Options: You can contact private providers like HCA Healthcare UK for a consultation with a private GP who can refer your child to an appropriate consultant or for tests.

Important Considerations

• Encephalitis Management:Physiotherapy is crucial after encephalitis to help with physical and cognitive recovery.
• Research Connection: The connection between autoimmune encephalitis and autism is an active area of research, so specialists in both fields may be relevant.

I’ve had similar happen after vaccines I think it can definitely have an effect on sensitive children. It did pass and I’m glad they have protection as if the vaccine caused a reaction I worry about the actual illnesses more

An actual illness like measles could have the same effect no doubt.

@Nataliewalsh89 how is your DS. Did he get any better? I know you had an appointment to see a consultant today. Were they of any help?

Hi thankyou for asking , no he hasn’t got any better , worse if anything. I now can’t put him down for bed or anything I’m driving around the streets with him to get to sleep early hours because as soon as I put him down he’s smashing his head and my back can’t take anymore rocking

the paediatrician has prescribed melatonin, and booked him for an mri and bloods, eeg ect
he’s getting tested and looking for
brain tumour
brain inflammation
nervous system
immune disorder
epilepsy
genetic disorder
poo samples are also been sent off for any signs of anything wrong there
she was amazing to be fair really listened

I am extremely sorry he is still so unwell, but pleased for you that this doctor is taking
serious steps to try to find out what is wrong. Well done for keeping going as you must be at your wits’ end. Poor little boy to be going through this.

I really am, I’m completely exhausted and sick with worry , I will update with the outcome of these tests for anyone else going through similar

Perhsps he and you can both sleep a little more now he is getting some melatonin. The doctor sounds exceptional so that is something to bring hope.

Arh op, I didn't post anything before as I have no medical knowledge that would be of any use and I came back to this thread hoping you'd have more of an idea after today's appointment

However you said the peadeatrician listened and is getting him tested for a number of things.

Again, no ideas or things to suggest but I hope you get the answers you look for and that not only does your little boy return back to his previous self but this nightmare is over for you. You seem to be doing all you can - I hope you've got some support ie family/ friends.

I was coming here to say this too

I’m so pleased you’re being taken seriously and I really hope you get answers soon x

Could it be the fever rather than the vaccine per se. In other words, do you think he was distressed by the feeling of being so unwell and is now feeling stressed and insecure about the world and the non-verbal aspect is compounding this?

In other words, could a similar fever and feeling of malaise as a result of, say, flu or chicken pox have caused a similar behavioural response? Bad experiences affect us all.

It could be quite possible but with him being non verbal it is impossible to know, so I’m just trying to make sure there is nothing too sinister going on first.
thank you all I really appreciate you taking the time to reply

Sending you peace and strength to get you through the next few weeks of tests. X

I am glad that the paediatrician took it seriously and is doing a comprehensive bank of tests. Doesn't make day to day life any easier for you, right now but being listened to finally is important. Have you considered contacting social care to see if there is any extra support they can offer you to get some respite? You must be exhausted.

Thankyou so much , I’m currently in the hospital after having surgery this afternoon to remove 3 impacted wisdom teeth ouch , I’ve got extremely low blood pressure so they aren’t letting me go home but to be honest that is probably best tonight as I’m on morphine and codeine ect
so worried though
I’m so exhausted but not sure if I’m going to be able to sleep here hopefully the meds will eventually knock me out, usually I can’t take a strong painkiller at all without feeling terribly ill but this pain relief isn’t touching me haha
just getting fluids though so hopefully this will make me feel slightly better.
I’ve self referred to early help at the beginning of summer I had one appointment in July and the next meeting is in September so I’ve still been left all summer holidays so they haven’t been any support at all apart from them saying they hope it gets better for us fffs