Journey of a child with PANS/PANDAS- thought this might be helpful

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Feel free to AMA!

No question as my daughter has same diagnosis so just sending unmumsnetty hugs

Ah thank you! Big one right back to you

How long after symptoms did you get a diagnosis?

So symptoms started suddenly in Autumn last year and it took me until March to get a diagnosis. GP had never heard of PANS/Pandas and went down anxiety / autism route and camhs referral which didn’t sit well with me as it was such a sudden onset of symptoms
and she was deteriorating before my eyes. I researched it for so long and realised she ticked nearly Every symptoms of PANDAS so went for a private consultation with a paediatrician who specialises in it and following examination/
history and bloods we got a diagnosis. So around 6 months.

Thank you. Wishing her the best for the recovery journey.

Hi there. I think this is happening with my son. Which specialist did you see?

Same here! No diagnosis & things have to get really really bad for a really long time before she ever gets ABX but the transformation after a 10 day course is just crazy. I’d be interested in which specialist too, and how much it all cost?

I’ve booked a GP appointment for next week to ask for ABX but I’m worried they’ll refuse. He’s been bad for about 8 weeks but I didn’t know about PANS / PANDAS so we’ve been seeing a CBT therapist- it’s not helping much. It didn’t feel right to me. OCD doesn’t explain the tics and rage. How long were you seeing symptoms before ABX?

It took me 6 months from symptoms onset to seeing a PANDAS specialist and starting antibiotics. We saw Dr Ubhi in London, GP continues to be of no help. It’s not cheap, it’s all gone on my credit card but it’s slowly saving my daughter. Please feel free to PM me. Initial costs for bloods and face to face
consultation are the most in terms of outlay and around £1400 total. Follow ups are much less and antibiotics not expensive.

What were her symptoms?

And how old is she?