Ferris' PANS Treatment
Donation protected
Several months ago--after a year of not knowing what the heck happened to him--Ferris was diagnosed with Pediatric Acute-onset Neuropsychiatric Syndrome (PANS). He has multiple infections which have triggered a misdirected immune response resulting in brain inflammation. His symptoms include OCD, anxiety, personality changes, depression, rage, cognitive decline, and sensory sensitivities. I'm not sure how to describe what it's like to see your child transform into someone you no longer recognize. But when people use the term PANDAS/PANS hell . . .
I really can't argue with that.
Since February, Ferris has been seeing a PANS specialist, Dr. Rosario Trifiletti (aka Dr. T). Each appointment is $500, which is not covered by insurance. We reluctantly had to postpone his last appointment because we could not afford it. We put off paying other bills, so we can keep his appointment for tomorrow morning. Over the last few months, Dr T has done extensive testing to find bacterial infections and immune/nutritional deficiencies. Right now, Ferris' treatment plan includes longterm antibiotics, anti-inflammatories and nutritional supplements. We hope that this treatment works because the next step would be to look into IVIG*, and the cost for that is outrageous. Also, it freaks me out a bit. We just started a trial of medical cannabis in hopes that it will help ease his headaches, inflammation, and anxiety. This (of course) is not covered by insurance either. All of his supplements need to be paid out-of-pocket as well.
We've been very fortunate to have gotten a lot of help from generous family members, and we've also received grants from a couple of local agencies. This helped to pay for additional testing that was not covered by insurance, his first two appointments with Dr T, and some supplements. Unfortunately, we've run out of those funds. We're hoping that our dear friends and family may be able to help Ferris get back to his old self. Any amount is appreciated, and we hope to be in a position someday soon to pay it forward.
Thank you for your support (or at least for reading this far).
Sincerely,
Laura, Jacob, Lennon, and Ferris
To learn more about PANS/PANDAS:
My Kid Is Not Crazy, Documentary Trailer
PANS/PANDAS Fact Sheet
*"Intravenous immunoglobulin (IVIG) is an intravenous administration of immunoglobulins (primarily IgG). The IVIG infusate is made by pooling immunoglobulins from thousands of human donors, thus increasing the diversity of the infusate. The mechanism of action of IVIG is unknown, as it has a wide range of effects, including local reactions with the host’s immunoglobulins and systemic changes in the balance of cytokines and chemokines. Whether the concentration level of certain IgGs or subclasses of IgG is the therapeutic agent or whether the aggregate volume of immunoglobulin is the trigger, the therapy appears to “reset” the immune system and has proven effective for autoimmune disorders." (from pandasppn.org)
I really can't argue with that.
Since February, Ferris has been seeing a PANS specialist, Dr. Rosario Trifiletti (aka Dr. T). Each appointment is $500, which is not covered by insurance. We reluctantly had to postpone his last appointment because we could not afford it. We put off paying other bills, so we can keep his appointment for tomorrow morning. Over the last few months, Dr T has done extensive testing to find bacterial infections and immune/nutritional deficiencies. Right now, Ferris' treatment plan includes longterm antibiotics, anti-inflammatories and nutritional supplements. We hope that this treatment works because the next step would be to look into IVIG*, and the cost for that is outrageous. Also, it freaks me out a bit. We just started a trial of medical cannabis in hopes that it will help ease his headaches, inflammation, and anxiety. This (of course) is not covered by insurance either. All of his supplements need to be paid out-of-pocket as well.
We've been very fortunate to have gotten a lot of help from generous family members, and we've also received grants from a couple of local agencies. This helped to pay for additional testing that was not covered by insurance, his first two appointments with Dr T, and some supplements. Unfortunately, we've run out of those funds. We're hoping that our dear friends and family may be able to help Ferris get back to his old self. Any amount is appreciated, and we hope to be in a position someday soon to pay it forward.
Thank you for your support (or at least for reading this far).
Sincerely,
Laura, Jacob, Lennon, and Ferris
To learn more about PANS/PANDAS:
My Kid Is Not Crazy, Documentary Trailer
PANS/PANDAS Fact Sheet
*"Intravenous immunoglobulin (IVIG) is an intravenous administration of immunoglobulins (primarily IgG). The IVIG infusate is made by pooling immunoglobulins from thousands of human donors, thus increasing the diversity of the infusate. The mechanism of action of IVIG is unknown, as it has a wide range of effects, including local reactions with the host’s immunoglobulins and systemic changes in the balance of cytokines and chemokines. Whether the concentration level of certain IgGs or subclasses of IgG is the therapeutic agent or whether the aggregate volume of immunoglobulin is the trigger, the therapy appears to “reset” the immune system and has proven effective for autoimmune disorders." (from pandasppn.org)
Organizer
Laura Carmichael
Organizer
Plattsburgh, NY
