Anyone heard of PANDAS/PANS in children?

[worriesworriesworries]

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.

I have a friend whose son had this diagnosis. I believe it was a long struggle to get the necessary treatment. Treatment is often just a course of antibiotics, but doctors are unwilling to try this. Whereas it would be good if this was attempted before any cahms referral etc. I think it will depend on the doctor you see if this is something they understand.

I believe there are Facebook groups for parents who have this diagnosis and those seeking diagnosis. If you joined one they may be able to help you. There is also private doctors in the uk who are experts in this field and can give zoom calls to discuss with you.

I hope this possibly helps in some way.

Look up children’s e-hospital, I think they are based in York. If you are not successful with nhs appt then this may be of help. Obviously your child could have something else and not pandas at all, but I understand your concerns and they should be taken seriously by a doctor who understands the condition.

Have you noticed any ocd type behaviour? With a sudden, not gradual onset? I think this is the most obvious symptom for pandas.

Yes I know a child with this after a virus. For them it presents like Tourettes with violent tics. They have had excellent support from hospital neurology team. The child basically became a different person overnight. Still struggling over a year post diagnosis.

PANDAS is a made up disease created by unscrupulous people to peddle fake cures to desperate parents.

But the cure is not a mo eh making scheme?

*money

Thank you all. I managed to speak to our GP this afternoon who prescribed antibiotics and has put DC forward for a number of blood tests, including a referral to Paeds. I'm so scared. I don't recognise DC anymore- they've been so difficult the past 6 weeks. I've genuinely struggled to cope keeping their younger sibling safe from DCs outbursts. Yesterday, they bit me HARD and it took every ounce of me not to hit back. There are constant tantrums where they feel like they've been wronged. The tics present as teeth grinding or random hand flapping, vocalisations (which is why I was thinking ASD), DC is hysterical when husband goes to work because they want dad with them AT ALL TIMES, their concentration is almost zero atm and they need constant checking to ensure they've heard what's been said or understood what someone has said. They've mentioned death so many times, eg. 'If I run into the road, I will die'. Another one was pointing to the railings (walking past a train station) and saying the trains would crush him if they weren't there to keep him off the tracks. There are hallucinations in that DC has mentioned a star ('sent by God') that looks like a rainbow that follows them and monsters in the hallway.

@NeurologicallySpeaking

Yes I know a child with this after a virus. For them it presents like Tourettes with violent tics. They have had excellent support from hospital neurology team. The child basically became a different person overnight. Still struggling over a year post diagnosis.

So sorry to hear this. How are they a year later? What are they struggling with?

@Abneynteel

Have you noticed any ocd type behaviour? With a sudden, not gradual onset? I think this is the most obvious symptom for pandas.

They MUST have a specific toy with them at all times or any item of interest at a particular moment in time or all hell breaks loose. They'll become highly anxious entering a social situation for fear someone might take their toy/item(s) of interest away. No amount of reasoning works.

If DC is doing something, they'll have to finish what they're doing NO MATTER WHAT. They'll become rude and say 'no, let me finish' or they'll talk over me and yell 'you're not listening to me'. This is not my child. We've never had any tantrums ever. This third year is so, so different.

Ps. I rang the PANS/PANDAS helpline and the lady I spoke to was so lovely. The website is incredibly helpful too. My doctor had no idea what I was talking about and was researching the condition as she was speaking to me. I feel scared that PANS/PANDAS is so unheard of amongst professionals in this country. North America is way ahead of us.

Sorry to hear you’re going through this. It sounds really worrying to deal with.
Do you know if your GP referred urgently to Paeds? I think that might be a good idea with such a sudden severe behavioural change & regression in physical skills.
I hope you get seen & the support you need soon.

Here is UK information on it:
patient.info/doctor/pandas-paediatric-autoimmune-neuropsychiatric-disorder-associated-with-streptococcal-infection

My friends daughter has had this for several years (she's 14)

@Fizbosshoes

My friends daughter has had this for several years (she's 14)

Is she fully okay now? Did she have any related health conditions develop? What were her struggles at school?

@Juniper74

Sorry to hear you’re going through this. It sounds really worrying to deal with. Do you know if your GP referred urgently to Paeds? I think that might be a good idea with such a sudden severe behavioural change & regression in physical skills. I hope you get seen & the support you need soon.

She did say she'd never come across this before but based on what she was reading, she wasn't willing to take any chances with not prescribing antibiotics so she was going to arrange blood tests, a referral to Paediatrics and a telephone follow-up next week to see how the antibiotics were working. We took DC into hospital yesterday because of a non-blanching rash which I mentioned and she was disgusted they'd not run any tests on DC.

[quote Thecurtainsofdestiny]Here is UK information on it:
patient.info/doctor/pandas-paediatric-autoimmune-neuropsychiatric-disorder-associated-with-streptococcal-infection[/quote]

Thank you for this. Now that I'm looking for it, there's so much information out there. I suppose it's potluck who you come across in the medical profession and how determined/motivated they are to look further into this condition.

I have a friend who has a child with this. I don't have any advice but she did get help following a referral but it was a battle to see a doctor who would entertain the idea and prescribe antibiotics.

@Peggytheredhen

I have a friend who has a child with this. I don't have any advice but she did get help following a referral but it was a battle to see a doctor who would entertain the idea and prescribe antibiotics.

That's so sad.

I'm lucky the doctor I spoke to took my concerns seriously and prescribed DC antibiotics without seeing them m but there's likely a long road ahead as we see other professionals. Sadly, not much is known about the condition. A lot of it is 'possibility of links to...' etc. instead of cold, hard facts.

That’s great you got the antibiotics. Hopefully they work and if not at least it has been ruled out. I think if you get antibiotics fairly quickly to treat pandas you should get a remarked improvement. The person I knew had pandas at 8. He wasn’t treated for about 6 months until they discovered the cause. He is fine now 4 years later. Took about a year overall to get back to normal

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

A friend is absolutely convinced her children have it. She shares a LOT of stuff on Facebook about it, some seems scientific and properly researched. A lot of things she shares though is quite worrying and has an overlap with the anti-vax nonsense.

OP so you spoke to the GP yesterday, git antibiotics, blood tests being arranged and a referral to paediatrics. Then you took the child to the hospital and they were “disgusted” that he’d not had the blood tests already. Did I get this right? I don’t see what the GP could have done more and why the “disgusted” comment.

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

@LadyWithLapdog

OP so you spoke to the GP yesterday, git antibiotics, blood tests being arranged and a referral to paediatrics. Then you took the child to the hospital and they were “disgusted” that he’d not had the blood tests already. Did I get this right? I don’t see what the GP could have done more and why the “disgusted” comment.

Sorry I didn't explain that very well.

GP on the phone was very responsive and did everything she could. The night previously, we took DC to hospital for a rash we were concerned about but the doctors in A&E said it was absolutely nothing to worry about and sent us home without any further tests, etc. The GP was 'disgusted' (her words) that staff hadn't carried out any blood tests, IV fluids, etc. to rule out something serious.