Hope for Evan's autoimmune disease (PANDAS)
Donation protected
This has been a long journey to try and heal our son, Evan. This has been an over 7 year journey of searching and seeking and trying to figure out what is going on with our son. It's been messy, hard, scary, and discouraging throughout the years. Trying to explain to friends and family the behaviors and how they come and go, never being able to find the right words to explain how amazing this little boy is when most of the time they see an anxious little boy with some big behaviors depending on how he's feeling. It's tough, but we can do hard things...
Autoimmune encephalitis (AE) can produce a very wide range of neuro-psychiatric symptoms. A major challenge in diagnosis is that different symptoms may appear at different times and different levels of intensity, so that the disease may mimic many other disorders. Some patients initially present with either neurological or psychiatric symptoms, further complicating diagnosis.
We had a follow up appointment to continue to try and heal Evan's brain with our pediatric neurologist in Washington DC to try and complete IVIG. The therapy appears to “reset” the immune system and has proven effective for autoimmune disorders. Unfortunately, insurance does not cover this. Total cost was $10,680. IVIG was $5,340 per day with the Gamunex IVIG, infusions and meds.
Over the last seven years we have seen numerous doctors, neuro-psych's, nutritionists, had way too many observations and evaluations. He has had numerous blood draws, catheters, mri's, CT scans, throat cultures, urine catches and hospital visits and stays. Once school started in preschool, he has to be removed from classrooms, was suspended, and then impulses got worse with hitting, kicking, biting, etc. Looking back, this always got worse when others were sick in the classroom, or someone he was close with was sick. When we knew he was really sick and something was going on, we noticed him trying to head butt others, had suicidal thoughts about himself or hurting others, he had to be safely restrained, had mania, impulses, attention seeking and avoiding behaviors, emotional extremes, food refusal, not sleeping, body pain, rages with nose bleeds, running away from school, and in constant fight or flight mode. It's been a long road with tons of unanswered questions.
Would love your prayers as we continue to try and heal our son and would love anything you can donate to help as costs are high for treatment for IVIG ***which insurance does not cover.
Man...this kid is a fighter though. He is a warrior and one of the bravest people I know. His superpowers are amazing and we are so proud of him.
Autoimmune encephalitis (AE) can produce a very wide range of neuro-psychiatric symptoms. A major challenge in diagnosis is that different symptoms may appear at different times and different levels of intensity, so that the disease may mimic many other disorders. Some patients initially present with either neurological or psychiatric symptoms, further complicating diagnosis.
We had a follow up appointment to continue to try and heal Evan's brain with our pediatric neurologist in Washington DC to try and complete IVIG. The therapy appears to “reset” the immune system and has proven effective for autoimmune disorders. Unfortunately, insurance does not cover this. Total cost was $10,680. IVIG was $5,340 per day with the Gamunex IVIG, infusions and meds.
Over the last seven years we have seen numerous doctors, neuro-psych's, nutritionists, had way too many observations and evaluations. He has had numerous blood draws, catheters, mri's, CT scans, throat cultures, urine catches and hospital visits and stays. Once school started in preschool, he has to be removed from classrooms, was suspended, and then impulses got worse with hitting, kicking, biting, etc. Looking back, this always got worse when others were sick in the classroom, or someone he was close with was sick. When we knew he was really sick and something was going on, we noticed him trying to head butt others, had suicidal thoughts about himself or hurting others, he had to be safely restrained, had mania, impulses, attention seeking and avoiding behaviors, emotional extremes, food refusal, not sleeping, body pain, rages with nose bleeds, running away from school, and in constant fight or flight mode. It's been a long road with tons of unanswered questions.
Would love your prayers as we continue to try and heal our son and would love anything you can donate to help as costs are high for treatment for IVIG ***which insurance does not cover.
Man...this kid is a fighter though. He is a warrior and one of the bravest people I know. His superpowers are amazing and we are so proud of him.
Organizer
Kasey Merritt Laughlin
Organizer
Greenville, IL
