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PANS/ PANDAS Research Project
MichelleNewbyOT posted a topic in PANS / PANDAS (Lyme included)**Approved by Forum Admin** Parents and Carers Needed to Participate in Research Study! Do you have a child aged between 5 and 12 years with a PANS/ PANDAS diagnosis and currently live in either Australia, UK, USA, Canada, Ireland or New Zealand? Researchers at the University of Newcastle, Australia, are researching the impact that PANS/ PANDAS flares has on a child’s participation in daily life activities. If you are interested in finding out more or participating, please click on the following link: https://is.gd/PANS_Study. We encourage you to invite other families you know, who may also be interested in participating in the study, by sharing this flyer or the above link. This research is being coordinated by Michelle Newby, PhD Candidate (firstname.lastname@example.org); Shelly J Lane, PhD, OTR (Shelly.Lane@colostate.edu); Kirsti Haracz, PhD (email@example.com); and Janice Tona, PhD, OTR (firstname.lastname@example.org). This project has been approved by the University of Newcastle, Human Research Ethics Committee, Approval No. H-2019-0284
Hi All, I am new to this forum and have 3 children diagnosed with PANDAS/PANS-- DS15, DD10, and newly diagnosed DD6. Of the three, only DD10 has seen improvement with antibiotics. DS15 has been struggling since Jan. 2012, head and neck tics are indescribable, panic attacks, and OCD. Makes going to school very challenging. DD6 was diagnosed this past year, and we thought we were managing tics with antibiotics, as they were subtle and infrequent. She has ongoing severe separation anxiety. A few weeks ago, however, she too developed awful head and neck rolling tics. We see a direct correlation between gluten and dairy and DD6's tics, and have changed her diet. Lately, however, she is still ticcing shortly after eating even processed "gluten free" foods, so I am confused (unless they are cross-contaminated, as she has a peanut and flax allergy as well). Problem with all of my kids seems to be Mycoplasma. We cannot eradicate it from my house. I am beginning to wonder if my dog might even have it:)! Does anyone else have multiple children with PANS/PANDAS, rooted in Mycoplasma? If so, do your children have similar tics? And have you had any success in treating it? Many thanks for any responses. And best wishes to all here for speedy recovery.