Please Help Support Chris G's Medical Expenses
Donation protected
My best friend Lauren and her husband Lou’s son Christopher is one of the sweetest, funniest 6-year-old boys I’ve ever met. Such a rambunctious personality always so full of laughter & joy. In November of 2020, Christopher woke up one day with facial pain, severe swelling, and a high fever. His mother, 7 months pregnant, and with 2 other children (3 boys total) rushed him to the best children’s hospital in South Florida while their father was 4 hours away for work. He had many blood tests done at the hospital along with IV fluids and antibiotics. It took more than a week for his results to come back as positive for mono (Epstein Barr virus) and mycoplasma (walking pneumonia). By this point, he was back to being and feeling like normal, so his family thought the nightmare was over.
Fast forward to February 1st, 2021, when Christopher had his first cold since having mono/mycoplasma and woke up one day a completely different child. He had constant all-day “seizure like”tics hypersensitivity, severe OCD, emotional outbursts, and would not eat. After getting seizures rules out through a normal MRI and EEG, he was diagnosed with PANS - Pediatric Acute Neuropsychiatric Syndrome. PANS is similar to PANDAS (a condition where strep triggers an inflammation response in the brain) but instead of strep, it is triggered by other infections such as Epstein Barr and mycoplasma.
Basically, it is a disorder that when his antibodies were trying to fight off these infections in him, they mistakingly crossed through and permeated his blood-brain barrier causing an Autoimmune Encephalitis - specifically the Basal Ganglia (the part of the brain responsible for causing these neurological type symptoms). Much like what rheumatic fever can do to the heart, is what Pans can do to the brain. This sudden onset of symptoms all happened the same exact week Christopher’s mom, Lauren, delivered his baby sister on Feb 8, 2021.
The blood-brain barrier can heal but they still have a long road ahead of them. Lauren was able to find one of the top PANS specialists in her state but unfortunately, because it is still a newly studied and rare syndrome (1998), no specialist takes insurance for treatment. Antibiotics and steroids were able to get most of his symptoms under control, but the hard part is healing the immune system to be able to function again normally on its own. This means not only his 1–2-month doctor appointment checkups but also all his bloodwork and other thorough testing for this had to be paid out of pocket!! It costs $400-500 for each dr appointment and that is not including all his medications, treatments, and supplements. They have spent close to $6,000 so far only since February 2021 on getting him medically treated as quickly as possible since the basal ganglia (blood-brain barrier) has a greater chance to heal the earlier you catch and treat it.
It’s important to keep up with dr checkups as much as he can especially when trying out different medications/dosage/treatments to be able to let the dr know how he’s reacting/responding to and figure out what’s working best.
Christopher’s level of infection is still HIGH and his bloodwork is looking like he possibly will end up being a good candidate for a treatment call IVIG - (Intravenous Immunoglobin). IVIG is for people who do not have enough healthy antibodies and have to get them through an infusion from thousands of healthy donor plasma to try and “trick” the brain that it doesn’t need to cross and attack the basal ganglia any longer. Insurances also do not cover this and it costs anywhere between $10-12,000 per IVIG treatment. And Sadly, for these kids sometimes only one IVIG is not even enough. We are hoping we won’t have to go down that road but if they do, I don’t want this family to have to worry about how they are going to afford to keep up with regular medical treatment for their son’s brain inflammation any longer. Anyone who has met Chris knows he is such a special and unique little boy.
Any amount donated will go directly to Christopher’s dr visit co-pays, medications, further testing to monitor his progress, and possible future blood treatments if needed. Any amount you can give will be greatly appreciated!
Thank you!
Fast forward to February 1st, 2021, when Christopher had his first cold since having mono/mycoplasma and woke up one day a completely different child. He had constant all-day “seizure like”tics hypersensitivity, severe OCD, emotional outbursts, and would not eat. After getting seizures rules out through a normal MRI and EEG, he was diagnosed with PANS - Pediatric Acute Neuropsychiatric Syndrome. PANS is similar to PANDAS (a condition where strep triggers an inflammation response in the brain) but instead of strep, it is triggered by other infections such as Epstein Barr and mycoplasma.
Basically, it is a disorder that when his antibodies were trying to fight off these infections in him, they mistakingly crossed through and permeated his blood-brain barrier causing an Autoimmune Encephalitis - specifically the Basal Ganglia (the part of the brain responsible for causing these neurological type symptoms). Much like what rheumatic fever can do to the heart, is what Pans can do to the brain. This sudden onset of symptoms all happened the same exact week Christopher’s mom, Lauren, delivered his baby sister on Feb 8, 2021.
The blood-brain barrier can heal but they still have a long road ahead of them. Lauren was able to find one of the top PANS specialists in her state but unfortunately, because it is still a newly studied and rare syndrome (1998), no specialist takes insurance for treatment. Antibiotics and steroids were able to get most of his symptoms under control, but the hard part is healing the immune system to be able to function again normally on its own. This means not only his 1–2-month doctor appointment checkups but also all his bloodwork and other thorough testing for this had to be paid out of pocket!! It costs $400-500 for each dr appointment and that is not including all his medications, treatments, and supplements. They have spent close to $6,000 so far only since February 2021 on getting him medically treated as quickly as possible since the basal ganglia (blood-brain barrier) has a greater chance to heal the earlier you catch and treat it.
It’s important to keep up with dr checkups as much as he can especially when trying out different medications/dosage/treatments to be able to let the dr know how he’s reacting/responding to and figure out what’s working best.
Christopher’s level of infection is still HIGH and his bloodwork is looking like he possibly will end up being a good candidate for a treatment call IVIG - (Intravenous Immunoglobin). IVIG is for people who do not have enough healthy antibodies and have to get them through an infusion from thousands of healthy donor plasma to try and “trick” the brain that it doesn’t need to cross and attack the basal ganglia any longer. Insurances also do not cover this and it costs anywhere between $10-12,000 per IVIG treatment. And Sadly, for these kids sometimes only one IVIG is not even enough. We are hoping we won’t have to go down that road but if they do, I don’t want this family to have to worry about how they are going to afford to keep up with regular medical treatment for their son’s brain inflammation any longer. Anyone who has met Chris knows he is such a special and unique little boy.
Any amount donated will go directly to Christopher’s dr visit co-pays, medications, further testing to monitor his progress, and possible future blood treatments if needed. Any amount you can give will be greatly appreciated!
Thank you!
Organizer and beneficiary
Marisa Disisto
Organizer
Port Saint Lucie, FL
Lauren Giannino
Beneficiary