JessL

I've heard of getting people to draw clocks among other things, I was wondering if anyone has gotten their child to do similar 'tests' when in a suspected flare? I know my daughter writes and draws reverse and right to left with inflammation.

I saw this advertised on the pandasnetworkofficial insta page and thought perhaps it could be shared here for others. https://www.eti.training/book-online/pandas-parents-maintaining-stability

Thank you again for your response! Such a great way to describe the situation and get the point across and I will make note of the lending terms when I explain this to family. We are very fortunate to have pediatric neurologists who have studied with Dr Russell Dale in Australia that now work at our childrens hospital and have a particular interest in PANDAS/PANS, our gp has specifically requested us to see them. I have another appointment with our gp tomorrow so hopefully he can speed things up. Making note of the tourettes turf! IVIG has been suggested for us in the past and I am hesitant, I guess it's confirming this is a real thing and that hits hard

Ah wisdom GIVER. Thank you for this response. I am myself trying to get tested for MCAS so this is not new to me She has a great appetite, we are very lucky this hasn't changed much during flares though the pickier side comes out we don't put much attention to that. She is RIDICULOUSLY hard to get any supplements/medication in but I will grab some antihistamine and see if it changes anything next time she complains.

As in a family member or otherwise? I have had family offer to take my daughter when she's sick so I can go to work etc, but most of the time she doesn't want to go anywhere. If made to she holds it in and her flare is 10x worse the second she gets home and through the next days, also giving them the impression she's being 'naughty' or manipulating me. Providing a 'safe place' with me or 'giving in' to her demands. My gut says I'm providing a safe place for her very overwhelmed brain but I'm getting a few other comments from family which have me second guessing. How are you guys dealing with this? On a wait list for our neurologist..

Thank you! Gosh I'm waiting for a miracle for our sleep, my 5 year old pans kid has never slept more than a few hours at a time and never in her own bed, going to hunt down that dawn huebner.

Thank you! Will look into it

Ugh. Big hugs. I'm so sorry, I really feel you. I was where you are just last month, emailing and calling our doctor in tears asking if this is how our lives will be forever now. I still wake at all hours of the night with a hundred questions and thoughts etc, waiting for the night time wake ups of screaming etc. It feels neverending. PTSD for parents with PANS/PANDAS is SO real. The caregivers need help too. This is a lonely wild ride. If you're able to find a support group I know a lot of parents find just venting to people who understand therapeutic. Xxo

Thanks! I hate to overthink and believe everything is a trigger but I was so sure that the timing wasn't a coincidence, for the second time in a row. We don't have much support in my country so this I have to find out about it all online. I should really have my own abx fridge at home at this rate

EDIT: Sorry, search wasn't working for me earlier. I've managed to find other posts explaining a little bit more. I was reading year old posts on here tonight and came across one that mentioned a loose tooth as a trigger. Now I have questioned this in the past with a dr and was met with a no, that cannot trigger, but this is the second loose tooth with a flare close behind. Has anyone else experienced this? Please explain 😨

Just the information I was looking for, thank you. She is not on antibiotics yet, we have been given cbd oil and redipred which is slighttly helping but obviously needing to address/support those vital pathways. Will have a look at that product now!

Hey everyone, new to this forum but unfortunately not new to PANS. MY 5 year old is currently going through her second (major) flare and it's as awesome as you can imagine. One thing that's popped up this time is she is constantly complaining of her skin being itchy, though no signs of irritation anywhere. Usually when her anxiety is quite high or trying to get dressed (sensory issues extreme). Has anyone else encountered this?