Ep.113 How We Got Our PANS / PANDAS Kid Back to Baseline in Less Than 6 Months (with no IVIG) & So Can You!

In this episode Aly & Emily discuss getting Luke back to baseline after having PANS for three years as well as lyme disease, which he was born with. We did this with the help of his amazing clinician, Karn Johansen, PA-C. Find her here: https://www.iowaspecialtyhospital.com/doctors/karn-johansen-pa-c-johansen & https://www.medmaps.org/clinician-directory/ia/clarion/karn-johansen/
Or find a local MAPS provider here: https://www.medmaps.org/clinician-directory/
(To become a patient, Karn requires one in-person appointment before moving to telehealth visits. We drove several hours to see her and it was definitely worth it!)

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LINKS: omitted this episode due to character limit, sorry!
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OUTLINE: How We Got Luke Back To Baseline in  Less Than 6 Months
(This was the path that worked for us. Every case is different.)

A) At the time we first met with Karn we had already:
• Read 2 books on P/P
• Tested positive for Lyme through an iGenex test
• Started daily journaling about a month beforehand, tracking:
• Made a list of infections to be sure to test for at initial appt

B) At our initial appointment we:
• Had a list of questions prepared (& at every future visit!)
• Scheduled weekly telehealth appointments for several weeks out
• Karn started Luke on the necessary medications, vitamins, supplements, and melatonin!

C) We saw our LLMD, Dr. Charles Crist in Ashland, MO
• In addition to antibiotics, etc, we started Luke on every optional treatment we could afford, such as LDA + allergy drops

D) We continued tracking daily in a planner which meds/supplements were making a visible difference in Luke's symptoms
• Continued meeting with Karn weekly until she suggested otherwise
• At this point we realized we would meet our deductible and OOP max so we did all the tests and procedures that could possibly be helpful:
- Allergy testing with a local allergist
- Electrodermal Screening with Dr. Shannon White at Chiro in Motion (Des Moines, IA)
- MRI
- EEG
- Met with a local ENT (Dr. Ryan Dempewolf) and gold Luke's tonsils and adenoids removed. This was a simple surgery but took about a week of recovery.
• Every week with Karn we would go over which symptoms were still an issue and address what we could add in to help, and see what we could remove from Luke's routine that wasn't helpful

E) Once he was somewhat healed and more stable we could address: mold + parasites
• Mold
- ERMI tested our house with Envirobiomics (many think these tests are oversensitive)
-Mycotox Panel on Luke through Great Plains Laboratory, ordered by Karn
(neither of these were covered by insurance)
• Parasites
- Over the counter pinworm treatment
- Para1 from CellCore
- Ivermectin through our LLMD

F) Decided to switch schools for the following school year & move to a different house, for a fresh start environmentally and emotionally. Most doctors would not recommend this but we knew it was the right move for us :)

G) Added in the anitpsychotic, Risperdal (Risperidone) after first testing out other SSRIs such as Zoloft. This was necessary to calm a dangerous level of impulsivity, and the last step to getting Luke back to his baseline!