Ep.124 Our Experience with IVIG for PANS PANDAS - All the Dirty Details: Why, How, Cost & More!

Aly & Emily discuss IVIG for PANDAS & PANS and Aly tells all the details of Luke's first (maybe only?) experience with IVIG! As always we also discuss how we've been healing from our Lyme Disease & PCOS, what media we've been enjoying recently, what we've been eating & more! Thanks for hanging out with us today : )

3 days out Luke has had no side effects from IVIG, other than some bad night terrors after the second night. The following night was back to normal. The 4th night he had a bad headache. Staying very well hydrated helped with the symptoms! As did the steroids.

TRIGGER WARNING: discussion of suicidal ideation + homicidal ideation in young children. Depression is a common symptom of PANS. Suicidality has been reported in 40% of the patients who are diagnosed with PANDAS. Impulsive/dangerous behavior (60%), homicidal ideation (19%) and life threatening violence (14%) are also reported. It's not good, hoes :(

Success rates of IVIG per Dr. K:
• 78% success rate
( Success defined by: 75% symptom improvement, resumption of normal academic, social & family life)
• 12.7% of patients require a second treatment within the first year
• 24% relapse rate in the two years following initial treatment
• 70% of patients needing additional treatments had either not adhered to the post-treatment antibiotics or had a case of break-through strep

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LINKS:
• Dr. Kovacevic: https://youtu.be/RCobb6IonmI
• Dr. K's email address: mkovacevic@aol.com
• Luke's fave treehouse video LOL: https://www.youtube.com/watch?v=cSQirnCMH5o
• Blackstone: https://www.acehardware.com/departments/outdoor-living/grills-and-smokers/gas-grills/8338220?store=03397&gclid=Cj0KCQjwmtGjBhDhARIsAEqfDEf8TyuXaRyGK1wKTr76v3H12RLPqfb5LN_Yqb5MglrKjwKHsfbIV8YaAgKCEALw_wcB&gclsrc=aw.ds
• The BEST Black Bean Burgers: https://showmetheyummy.com/black-bean-burger-recipe/
• HotworXXX: https://www.hotworx.net
• Luke's PANS Provider: https://www.iowaspecialtyhospital.com/doctors/karn-johansen-pa-c-johansen
• PANS/PANDAS Documentary, My Kid Is Not Crazy: https://www.youtube.com/watch?v=WJQT9-cQwIw

Music by Slip.stream - Overu "Chill With You" - https://slip.stream/tracks/1df7d9e4-dc67-43fb-9f84-f48a8a0ca8d2

Aly & Emily are imperfect vegans, homeschooling moms, and sisters, who are raising four littles side-by-side. We are experts in nothing but we've been around the block a few times with several specific subjects, and we love to share our experiences with you! Healing for Hoes is all about creating a community of women through challenging times of life. Our aim is to share our experiences and help you feel validated, supported and less alone <3

DISCLAIMER: Healing for Hoes content is for informational purposes only, and not a substitute for professional medical advice.