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Misdiagnosed: How Children With Treatable Medical Issues Are Mistakenly Labeled as Mentally Ill

In the fall of 2015, eleven-year-old Sophia Cahill* began blinking her eyes. Though an eye doctor dismissed the blinking as a symptom of dry eyes, her parents would look back later and realize the blinking was a tic. Sophia was otherwise healthy and unbothered by the blinking so life carried on as usual. The simple tic would unfortunately foreshadow much darker days to come.

As Sophia entered seventh grade the following year, she enjoyed spending time with friends and family, performed well academically, and excelled in several sports. She played softball and skied black-diamond slopes with ease. With a love of horseback riding, she had spent two weeks the prior summer at an overnight riding camp. Independent and responsible, she had flown alone across the country to see her cousins and was a trustworthy babysitter for her siblings. Sophia was happy and healthy, with a precocious sense of humor and an easygoing demeanor. Sophia’s parents, both medical doctors, had no concerns about her behavior or health that could have predicted that her life would soon be dramatically and abruptly turned upside down.
https://www.huffingtonpost.com/entr...le-medical-issues_us_59d6b302e4b0705dc79aa68f
 

Never Give Up

Collecting improvements, until there's a cure.
Messages
971
Wow, that was quite a story! The fact that it took them so long to figure it out, with both parents being physicians, is very telling of the limited knowledge and point of view of individual practitioners. It the Parents thought it was PANS or PANDAS, why didn’t they bring their daughter to an expert sooner?

The article presents PANS/PANDAS as having gotten a permanent black eye by a vocal group of neurologists who disagreed, and, oh, by the way, they had financial ties to a pharmaceutical company that stood to lose money if treatment approaches changed.

Interesting parallels of infection, followed by unrelenting symptoms, possible autoimmunity, and response to IVIG and Rituxan. I wonder if if Research into PANS/PANDAS and ME/CFS could yeild reciprocal benefits?

I’m glad this poor girl is back to normal. Hope relapse is not part of PANS.
 

Vojta

Senior Member
Messages
167
Location
Czech Republic
Interesting parallels of infection, followed by unrelenting symptoms, possible autoimmunity, and response to IVIG and Rituxan. I wonder if if Research into PANS/PANDAS and ME/CFS could yeild reciprocal benefits?
I did get positive test result for Cunningham panel (test for PANS/PANDAS) as some others on PR who did this test as adults. And with all the suspicions that there is some autoantibody involved in ME/CFS too it seems likely there could be paralel in causality infection>autoimmunity. It's even possible that those diseases overlap in some patients when there are more autoantibodies that you develope later during disease (suspectibility to autoimmunity due do immune dysfunction caused by CFS?).
 

Cheshire

Senior Member
Messages
1,129
This time her parents were told she had a conversion disorder and that they were to bring her home and behave as though nothing was wrong with her. With that, Sophia was discharged from the hospital.

This advise is so dumb and insane, be it for an organic or a psychiatric problem. People with distressing psychiatric symptoms don't "do" that just because they're drama queen
 
Messages
2,125

"Now open to the possibility of PANS, hospital physicians agreed to treat her with intravenous immunoglobulin, or IVIG. Derived from the plasma of over a thousand donors, IVIG is used to treat a number of serious and life threatening medical conditions, including PANS. Sophia also underwent plasmapheresis, a procedure in which the plasma is separated from the blood cells, treated to remove auto-antibodies that may be attacking the body, and then returned to the body. Next she received Rituximab, a medication that halts autoimmune disorders by targeting and destroying B-cells, a type of blood cell responsible for antibody production."

Interesting
 

pattismith

Senior Member
Messages
3,930
One more hysteria conversion club members....:meh:

i wonder why they only mention children, adults can be concerned as well !:thumbsup: