F.E.A.S.T's Around The Dinner Table forum

Welcome to F.E.A.S.T's Around The Dinner Table forum. This is a free service provided for parents of those suffering from eating disorders. It is moderated by kind, experienced, parent caregivers trained to guide you in how to use the forum and how to find resources to help you support your family member. This forum is for parents of patients with all eating disorder diagnoses, all ages, around the world.

Join these conversations already in progress:
• Road To Recovery - Stories of Hope
• Events for Parents and Caregivers Around the World
• Free F.E.A.S.T Conference Videos

Visit the F.E.A.S.T website for information and support.

If you need help using the forum please reach out to one of the moderators (listed below), or email us at bronwen@feast-ed.org.

Need to talk with another parent? F.E.A.S.T. parents offer peer support via:

atdt31_US
As doctors and families continue to gather info and share, it is becoming apparent there is some overlap between the patients with PANS/PANDAS and EDs.  Certainly not every ED kid is also a P/P kid, but it is something to keep in mind. Both areas are still pretty misunderstood even in medical circles ... but they are starting to see that ED doctors should be alert to P/P and vice versa.  Here is a recent talk by a Stanford ED expert and her experience in identifying P/P kids in her practice.  Great conference if you have time to watch it all ... or for the ED person, you want to skip down to Dr. Cynthia Kapphahn.  

  https://sane.nu/sane-sweden-2019-pans-conference/?fbclid=IwAR0j_69P1uk90zP3vRhNDJskmgU1OzhKU2UOvaE5pKpgH9NjDs5YwRZgiYM
Mom of either pre-diagnosis or non-ed underweight 12 yoa (as of March 2018) kid here to learn how to achieve weight gain.  BMI steadily in the mid 12's for nearly her entire life.  Born 2006. UPDATE:  April 2018 diagnosed ARFID, based solely on weight being less than 75% of Ideal Body Weight.  Mildly picky, but mostly the problem is a volume/early satiety issue, along with abdominal discomfort and chronic constipation, all present since birth.  UPDATE:  July 2019 diagnosed with PANS. Dr. said likely started first PANS episode at less than 1 or 2 years of age.  On long-term daily prophylactic antibiotics. BMI now about 16 after period of intense refeeding prior to PANS dx,  followed by stagnation as we sort out what is next. FWIW ED-D is a fraternal twin and we have no other kids.
Quote
greekdude
is PANS/PANDAS treatable?
Quote
Foodsupport_AUS
Thank you for posting ATDT31. It is an interesting series of videos with lots to contemplate. 
D diagnosed restrictive AN June 2010 age 13. Initially weight restored 2012. Relapse and continuously edging towards recovery. Treatment: multiple hospitalisations and individual and family therapy.
Quote
Torie
Interesting.  Thanks. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
Quote
atdt31_US
greekdude wrote:
is PANS/PANDAS treatable?


short answer is “yes.”  Tons of variables and lessening the symptoms and keeping major flares at bay may be as much permanent cure as possible .... but if in fact there is an autoimmune process causing brain inflammation that is resulting in the neuropsychiatric symptoms, there are a multitude of treatment options and a fair prognosis. 

For the current consensus on treatment, you can look here (hopefully it links correctly - on my phone and rushes for time).  

https://home.liebertpub.com/news/revised-treatment-guidelines-released-for-pediatric-acute-onset-neuropsychiatric-syndrome-pans-pandas/2223
Mom of either pre-diagnosis or non-ed underweight 12 yoa (as of March 2018) kid here to learn how to achieve weight gain.  BMI steadily in the mid 12's for nearly her entire life.  Born 2006. UPDATE:  April 2018 diagnosed ARFID, based solely on weight being less than 75% of Ideal Body Weight.  Mildly picky, but mostly the problem is a volume/early satiety issue, along with abdominal discomfort and chronic constipation, all present since birth.  UPDATE:  July 2019 diagnosed with PANS. Dr. said likely started first PANS episode at less than 1 or 2 years of age.  On long-term daily prophylactic antibiotics. BMI now about 16 after period of intense refeeding prior to PANS dx,  followed by stagnation as we sort out what is next. FWIW ED-D is a fraternal twin and we have no other kids.
Quote

        

WTadmin