Seeking advice re:chronic pans in 16 yo

[Peridot94]

Hello.  We have 6 children with lyme and co-infections.  3 have PANS.  I am seeking advice for our 16 yo ds.  We think his PANS symptoms began around age 3 1/2 yo (positive bull's eye rash at 2 1/2 yo w/only an 8 day course of antibiotics.)  His prrimary symptoms until his teens were OCD and learning issues.  He was never formally diagnosed; we've put it all together within the last year after his sister had successfull treatment for an eating disorder with IV antibiotics.

 

Fast forward to now, he has major rages and still can't learn.  Super high anxiety and OCD in the need to control everything in his life.  He does not have relationships with anyone outside of our house and his siblings do not enjoy being around him as he is very abrasive.  After one year of antibiotics, physical symptoms have improved with no shift in psychiatric symptoms.  Our doctor has recommended brain mapping/neuro feedback and we are going to pursue that.

 

In the meantime, I would like to figure out how we can  start the process to be approved  for plasmapheresis, realizing that this is a long shot.  Does anyone have any advice?  We are in Colorado and if anyone knows of a clinic or doctor that we consult with, that would be appreciated, too.  Also...the Cunningham panel.  Has anyone had a positive after 10+ years of illness?  And, is it possible to get our son back after so much time spent in this illness?

Amy

[MaryAngela]

Hi Amy—

My DS (almost 14) has suffered from PANS for 10+ years.  We believe his first onset was when he stopped eating solid food at age 14 months, after a virus.  He continued to have what we now recognize as PANDAS/PANS symptoms until very recently. At age 8, he had an overnight onset of severe OCD and moderate tics.  He was treated unsuccessfully with psychiatric meds for 2+ years.  He had a 7-month reprieve from symptoms at age 10 1/2, using NAC and other vitamins and supplements, but at age 11 symptoms returned, even worse than at age 8.  His symptoms were as bad as the worst PANDAS case I’ve ever read or heard about.  Finally got diagnosis at age 12. He had tonsillectomy and HD IVIG at 12 with limited success.  Less than one year ago, he had a positive Cunningham Panel.  Again, this was more than 10 years after first onset, and even after 1 IVIG.  It was a struggle, but he has been approved for 6 monthly HD IVIGs.  Apparently this is the protocol for Autoimmune Encephalitis.     He has had 3 already.  He is about 90% improved.  It is nothing short of a miracle. By the way, our current doctor theorizes that the IVIG he had 18 months ago was not lasting, due to an active Mycoplasma Pneumonia infection.   

[Peridot94]

Thank you for your response and encouragement!  It gives me hope.  

We were on the fence about the Cunningham panel due to cost but if it is positive (and it should be), it sounds that would work greatly in our favor in getting treatment approved.

[MaryAngela]

If you are looking for a doctor, my DS has been under Donald Raden, MD’s care for just over a year.  He is in Highwood, IL.  He is an integrative psychiatrist, and specializes in Lyme (although my DS tested negative for Lyme).  He also has treated many kids and young adults for PANDAS/PANS.   I believe he will do phone consults.  My son has his IVIG at home.  The infusion service will go to Colorado, but there may be an issue if it’s not prescribed by a Colorado doctor.  Dr. Raden will sometimes use conventional psychiatric meds (at least short term) and antibiotics, but ultimately seems to use herbal treatments.  My DS is using herbal antiviral, antibacterial, anti fungal and anti parasitic remedies.  I can’t believe how well he is doing.  I thought this day would never come!

[bobh]

Our child had severe symptoms for about 4-1/2 years (not including a 1-1/2 year period of time where he was almost normal), and he has been about 90% for the last year.

It would be key to root out any chronic infection, as might exist for example in tonsils. That could be a lot of things - at one point (for our child), it was a mild case of gingevitus that really ramped up his symptoms.

I didn't believe that the Cunningham panel was worth the $, but I never had a health care provider or system (I am in Canada) that cared to look at it.