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 😩

It seen that IBS is a common problem in autistic children, has he been checked for that? And I do think you should report this change after the vaccine to the authorities. In Mexico all the pharmacies have signs telling us to report any possible reactions to medicines. It's not for us to say whether it has been caused by the vaccine

It seen that IBS is a common problem in autistic children, has he been checked for that? And I do think you should report this change after the vaccine to the authorities. In Mexico all the pharmacies have signs telling us to report any possible reactions to medicines. It's not for us to say whether it has been caused by the vaccine

Who would I report to the police, they would laugh and think I’m an anti-vaxxer conspiracy theorist.
if I was I wouldn’t of got him vaccinated in the first place but I will be hold off on any vaccines in the future unless given singly and spaced out, 7/8 viruses got pumped into him and if it turns out his immune system is compromised then it’s an injustice when I have reported this time and time again
mmr, polio, tetanus, men c, men b among others all give at the same time as 2 injections in both arms in my opinion is horrifying and I was trusting of our system
god I’m just so mad about it all can InPost photos here to show you ?

I am so sorry you have just been in hospital for wisdom teeth too. I hope you can keep putting one foot in front of the other. Has your husband/partner been with your DS while you are there?

What photos would you be referring to?

@Nataliewalsh89

@Morningsleepin is correct, it should be reported. In the UK, you report it under The Yellow Card Scheme. You can do this online.

yellowcard.mhra.gov.uk

Thanks so much I will look into this, yes my partner has had Finley whilst I’m in hospital just got him to sleep driving in the car after melatonin bless but thankful but my blood pressure is low so the nurse will probably keep waking me to check it
thankyou for the yellow scheme I’ve never heard of it I will look into that

So sorry that you're going through this - if you look at the special needs board on mumsnet you might find posts by other parents who have been through similar.

My DS was misdiagnosed with classic autism when he was 2.5 and non-verbal and my biggest fear was that he wouldn't ever be able to communicate, I found a lot of posts on the special needs board helpful around communication, so SALT, ABA, PECS and there's a kind of play therapy most LEA's offer which I can't remember the name of.

Sleep for you now I hope even if it is in fits and starts.

I’m so sorry you go a misdiagnosis, what did it end up being what your little one has ?
I will definatley have a look, I’ve. Tried pecs ect but he’s not taken to that at all maybe just not ready x

Good luck OP
when you get these tests done take them over to a neurologist who specialise in brain inflammation (Evelina has the best )

if you get seen by the right med they can reverse it with the right treatment . Hope you get the results soon x

The NHS doesn't have a treatment protocol for PANS/PANDAS so it's essentially ignored. It can't be ruled out by bloods alone. Can you accord private treatment? If so Dr Ubhi and his team are brilliant. Useful info here https://www.e-hospital.co.uk/resources/pandas/

Have a look on the PANS/PANDAS charity website for info to share with your GP. Could you persuade them to do a 14 day antibiotic trial? For a lot of PANS/PANDAS kids it's like a magic wand.

Also, whilst it won't help with diagnosing PANS or PANDAS, if your child has red flag neurological symptoms like headaches (could be causing pained cry and head banging);and vomiting (particularly in the morning) protocol is to MRI. Look at what is considered a red flag for these purposes so that you can flag relevant symptoms.

Keep an open mind, coincidences do happen. Are you in a position to get the scans done privately?

He had a severe s&l delay and social communication delay. PECS and I think any kind of SALT therapy is incredibly hard to do on your own, I remember trying to do it with DS when he was 2, his sister and I would get up an hour early every day to do a play session with photos of objects with him, but I no idea really what I was doing, when he actually had s&l therapy it was so much better. Are you able to access help through your LEA local offer or pay privately?

On the vaccine front - DS didn't have the MMR but at 13 months he lost his initial vowel sounds and stopped trying to make any kind of speech sounds which is I think one of the signs of autism, so the vaccines affecting children might just be a coincidence because it happens at the same age. But he didn't have the MMR because when his sister was that age one of the mums of two children in the original Andrew Wakefield study posted on mumsnet on a thread which was a q&a with a vaccine expert, her posts were heartbreaking and she was immediately shut down by posters and by mumsnet HQ - how many of the news articles slating Andrew Wakefield also interview the parents? and so I had the single vaccines done privately for DD. But as I said DS lost his developing speech at that age anyway without the MMR - and autism or not the only thing I cared about was if he would be able to communicate and with a great speech therapist and the LEA providing funding for 1-1 support in nursery, it took over two years but DS did learn to talk, it was a really slow gradual process but by the time he was 5 he was able to communicate.

My son had a few regressions when he hit different milestones and his behaviour was similar to your sons. I found craniosacral therapy made a difference he seemed a lot calmer and meltdowns gradually lessened. Also when he started to speak and communicate meaningfully he was much easier to manage. Its hard when what your dealing with constantly changes. I hope you find answers and a approach that works for you both.

For anyone wondering about PANS & PANDAS here is information as it is not known in the NHS.
https://panspandasuk.org/frequently-asked-questions/

My experience with that doctor was bit different

@Nataliewalsh89 if you even go down the pandas route best to go to dr Kinali

How is your DS? Has he had any test yet? Has his condition improved at all?

Nope, she put brain tumour ?? On the form when she requested to book the mri and it has been over 2 weeks and nothing I’ve not even had the report and paperwork come through the post yet from the paediatrician 🙄
he’s just the same if not worse , the melatonin isn’t helping , he went to sleep at 3.30am woke up at 7.15 am nd just fell asleep 20 mins ago , the biting ect head banging is worse

It is just extraordinary. How can they leave him like this on and on? I am so very sorry.

Is it worth calling them to check the referral hasn't been lost?

Imagine leaving a child suffering like this.

I’m just getting back in my feet, I went in hospital for wisdom teeth removal , came home was recovering the hospital game me codeine to come home with with no laxative or advice that I should probably take a laxative too I ended up getting an ambulance back to the hospital last week with faecel impaction worst pain I’ve ever had and it has been probably a longer recovery not being able to get the rest I needed 😩 I’ve sent an email across to the paediatrician because she didn’t give me a number, let’s see if I hear anything i highly doubt it.
it really is a joke I have early help involved nobody can do anything, I have OT calling me Thursday for an assessment I’m hoping they can get me some sort of safe bed somehwere I can put him down and hes safe because I can’t keep hold of him 24 hours a day I’m only 5ft and 6 and half stone and he’s getting bigger and stronger bless him

This is all a perfect storm of difficulties, OP.
Pray that you and DS come out of this soon.

Thankyou so much, I will keep you all updated, it has been a tough year so far for sure ❤️