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Original poster

Anyone heard of PANDAS/PANS in children?

51 replies

worriesworriesworries · 08/10/2021 15:15

I have reason to believe my DC has PANDAS. They had a viral infection a few weeks ago and it felt like a new child emerged in their place once it was over. They've regressed so much in their speech and language, behaviour, physical skills and they've also mentioned words to indicate they're hallucinating (they're 3). I'd originally thought it may be ASD (that's how much they've changed since their illness) and have asked for a referral to the local children's development team but have just come across PANDAS and everything seems to fit. I've made an appointment to see my GP but don't want to be seen as the paranoid mum who'd originally suspected ASD and now this (research does suggest that many children with PANDAS are misdiagnosed with ASD/ADHD or other conditions) so I'm not completely off but how can I make a case for my child to be tested for a condition that still isn't widely understood in the UK?

I would appreciate any help/guidance from anyone who is familiar with PANDAS/PANS or who has gone down getting their DC or themselves tested for it.

OP posts:
Original poster
worriesworriesworries · 10/10/2021 20:35

@The3Ls

We believe our 12 att the time daughter had it following strep infection. Fortunately Paediatrians were willing to consider it and gave course of antibiotics. They were really honest and said evidence was inconclusive but they didn't feel they could say it didn't exist either. 2 years later we get flaree ups when she has a virus - - recently did following covid. But short lived and manageable now

The evidence for antibiotics is inconclusive which is why I was gearing up for a bit of a fight. Luckily the GP I spoke to came on board very quickly (a lot of the GPs wouldn't have been- I'm lucky this GP was on call). How did your Dd change following her strep infection? Did the antibiotics work for her? When she has flare ups now, are they as bad/severe as the first lot of symptoms you spotted? My son is struggling to concentrate or attend to what we're saying to him, goes into a trance and has become so, so aggressive. He doesn't feel like my sweet boy anymore. I'm so upset to see him like this.

OP posts:
5zeds · 10/10/2021 20:58

Honestly your description sounds like it needs proper investigation. Does he have epilepsy?

The3Ls · 10/10/2021 22:48

We were lucky too. I am a healthcare professional myself so understood that it wasn't conclusive but appreciated they were happy to give it a go. We got severe withdrawal ticks rocking and phantom pain. She ended up with such a significant phobia about swallowing she was tube fed. Ended up in a wheelchair due to phantom pain. I can honestly say our world crashed down over night. The last case was two days of rocking ticking mmild paranoia. I think it has become a complicity of psychological needs now so it really hard to unpick. We just calmly repeat. We know this happens when you have been ill and we know it will pass. It does. I think at first we escalateed it alit unknowingly with all our medical investigations searching for answers. She was a very typically developing child who was for and healthy before hand

The3Ls · 10/10/2021 22:51

We just accept it as a chronic condition now that flares up we deal with it and in between she has a normal life

Original poster
worriesworriesworries · 12/10/2021 14:01

@5zeds

Honestly your description sounds like it needs proper investigation. Does he have epilepsy?

We've been referred to the hospital to investigate this (GP made the referral as I was talking to her) as well as the blood tests she's ordered.

No epilepsy that I know of but the sensory lapses and staring into space do worry me. Another thing I've just remembered DC does is bang his face on soft surfaces with gusto and then laugh afterwards. I'm not sure if it's a separate sensory issue or related but it's very worrying to observe.

OP posts:
Original poster
worriesworriesworries · 12/10/2021 14:02

@The3Ls

We were lucky too. I am a healthcare professional myself so understood that it wasn't conclusive but appreciated they were happy to give it a go. We got severe withdrawal ticks rocking and phantom pain. She ended up with such a significant phobia about swallowing she was tube fed. Ended up in a wheelchair due to phantom pain. I can honestly say our world crashed down over night. The last case was two days of rocking ticking mmild paranoia. I think it has become a complicity of psychological needs now so it really hard to unpick. We just calmly repeat. We know this happens when you have been ill and we know it will pass. It does. I think at first we escalateed it alit unknowingly with all our medical investigations searching for answers. She was a very typically developing child who was for and healthy before hand

Thank you for sharing this. I'm not a religious person but I'm praying if it is PANS we nip it in the bud before it leads to other things.

OP posts:
Original poster
worriesworriesworries · 12/10/2021 14:06

@5zeds

I think I’d want more than a fob off prescription for antibiotics for a child displaying such extreme neurological symptoms.

Antibiotics is what the experts who do know about this condition recommend in the first instance:

*Treatment should be initiated immediately – do not wait for test results

Initial Antimicrobial therapy. One of the following antibiotics should be given for 14 days: Penicillin V, Amoxicillin, Co-amoxiclav, Cephalexin, Clindamycin, Azithromycin, Clarithromycin*

www.panspandasuk.org/faq-s

Anyone heard of PANDAS/PANS in children?
OP posts:
5zeds · 12/10/2021 14:33

Yes, sorry I wasn’t clear, I wasn’t suggesting your diagnosis was correct and antibiotics was the wrong treatment for it, more that I would be very worried and want a thorough investigation.

Tealandabney · 12/10/2021 15:25

Just be aware to look for other things in your child’s life that could be causing this. My child had similar symptoms to pandas and he had sensory difficulties also appear overnight where he was scratching the walls with his fingernails to relieve his stress. After much investigation we discovered he was being bullied by a classmate. Once we sorted this and he was no longer so stressed the symptoms went away.

HSHorror · 13/10/2021 08:08

What sort of illness did he have?
Could have ongoing ear/uti etc.

My eldest reacts to illness and jabs. Always in trouble after the live flu spray. (And did have frequent bacterial infections at 3).

Original poster
worriesworriesworries · 13/10/2021 12:56

@Tealandabney and @HSHorror both of you make very interesting points and give me a lot of food for thought.

Dc has recently been toilet trained but has some kind of anxiety using the toilet and will absolutely REFUSE to relieve himself until he's fit to burst. I don't think it could be a UTI though since his urine is not cloudy? Or dark? It does smell though...

As for bullying. I don't think that's the case but DC has recently moved into the next room up in nursery and HATE, HATE, HATES this. He wants to go back to the younger class to be close to the staff in there... he makes no secret of hating nursery. Could it be this?

OP posts:
Original poster
worriesworriesworries · 13/10/2021 12:57

Having made my previous points, DC has had significantly few crying/hysteria episodes since starting antibiotics. We're going in for the blood test the doctor ordered tomorrow so will know more once the results come back.

OP posts:
Original poster
worriesworriesworries · 13/10/2021 12:58

Fewer*

OP posts:
CovidPassQuestion · 13/10/2021 13:25

The rainbow star he's seeing sounds like migraine aura. Ocular migraines (don't have the same headache that a normal migraine does) have a kind of wavy/zigzag pattern in your field of vision, that follows you round.

Tealandabney · 13/10/2021 13:39

Yes any change in his life that he is worrying about could bring about these symptoms for a sensitive child. For us a new boy came to the class and was bullying him. But it all happened in the playground not in class. So I figured out when he kept saying how he was hoping it would rain they could play indoors. It was praying on his mind, every day he woke up as looked outside to see what the weather was like.

Tealandabney · 13/10/2021 13:40

Just basically overhaul everything you can think of where he may need some extra support and take away his stress levels

DoctoraNova · 13/11/2021 22:06

@worriesworriesworries
How are things now OP?

Icewiththat · 14/11/2021 21:43

I actually ended up googling this back in the summer. It was highly likely my 4 year old caught covid from DH (although negative PCRs) and he was out of sorts for a good couple of weeks. They next 6ish weeks were so strange- he turned into a totally different child. Very angry, aggressive and emotional. Clingy and just odd in a way I couldn’t pin point. Then as quickly as it started, he woke up and was back to normal….

SUSB2016 · 02/11/2022 11:46

How are things now OP?

Cantfeelmuchthesedays · 08/11/2022 23:06

How are things op? Was it pans?

Worriemum · 05/03/2023 18:05

Iv been struggling with my little girl did u get to the bottom of this xxx

Cantfeelmuchthesedays · 11/10/2024 23:24

How is your son now op?

Worriemum · 12/10/2024 08:10

Not sure on the original poster but my little girl was eventually diagnosed. We have been battling it for over a year now xxx

Cantfeelmuchthesedays · 12/10/2024 12:19

@Worriemum How is she now? Xx

Worriemum · 12/10/2024 13:56

Still the same to be honest. Its a constant battle for us. Why do you ask are you i. A similar position xxx

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