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PANS/PANDA Anyone have experience?

4 replies

frenchieshouse · 13/05/2023 21:32

After months of struggling with DD4s behaviour I am finally calling the GP on Monday.

Over the last few months she has completely changed from a happy sunshine personalised, with the usual pre-school ups and downs but generally a pleasure to be around, like most 4 year olds chatty and funny.

However, over the last few months she has become aggressive, grumpy, screaming and crying all the time and just so distressed about everything. Initially it seemed like acting out behaviour. Then we were thinking about ASD or other learning needs, but after speaking with nursery and her being generally ok there we moved away from thinking that. Things like communication and eye contact are good.

The issues to be more specific are mostly centred on things 'hurting' or being 'not right'. Usually pants, socks, rest of clothes. Started as just moaning and groaning and has escalated over the last few months to tantrums and episodes of rage. Now in the last couple of weeks it's taking clothes off all the time in a state of distress, screaming excessively about issues like socks 'hurting' or her hair being painful and getting besides herself over when her skin feels wet after hand washing, toilet or eating/drinking. The level of screaming and crying is worsening and has now started happening out and about when it was just at home. There are windows of time when she's fine and then it suddenly goes off without warning.

She has previously been anaemic but has taken daily vitamins including iron for the last 2 years.

I was going to phone the GP to first request a blood and urine test - check anaemia and anything more sinister on blood tests. Then if all clear ask for referral as possible ASD or along these lines. However, I've just read about PANS and PANDA and it's like a lightbulb moment. She had strep a in mid December and was really ill. She had penicillin for about a week and recovered well but at points during the illness her temperature was scarily high.

I can't be 100% as I'm now casting my mind back in our hectic lives but it does seem possibly around then that all this started. Now I think how lovely she was and how difficult and frankly horrible to be around she is now. I really don't feel her behaviour is normal at all right now and relatives who she is always usually 'good' for (even if acting out at home) are also experiencing this behaviour with her too. It's really worrying me and I'm finding it difficult to cope with when she's distressed.

Does anyone have any experience and think this could sound like PANDAs or have any advice getting across to the GP? From what I understand it's not very well known about.

OP posts:
frenchieshouse · 13/05/2023 21:40

Oh and does anyone know if PANDA is possible when the initial infection was treated with antibiotics? I believe the treatment from PANDA is antibiotics along with any CbT required, so I don't know if I'm barking up the wrong tree if she was initially treated.

OP posts:
SiouxsieSiouxStiletto · 14/05/2023 09:43

Oh that sounds awful for all of you. There has been a couple of threads in the past that I've seen and if I remember rightly, both started with Strep.

Wishing you luck at the Doctors tomorrow Flowers

Nannynotmum · 22/08/2023 11:55

Experiencing exactly same issues with our usually wonderful and happy 4 year old grandson. Had antibiotics 4 times this year. So distressing to experience the same behaviour you describe. Have looked up Pandas and it seems to fit. However the private treatment appears to run into thousands. If you discover any NHS pathways for treatment please let me know. Commiserations to you .

SiouxsieSiouxStiletto · 22/08/2023 21:37

@Nannynotmum I think it might be worth contacting Pans Pandas UKK*.

I hope you find some support Flowers

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