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May 17, 2012 I gave birth to a perfect 8lb baby boy. Henry had a personality that could melt your heart from the moment he took his very first breath. As the years passed, Henry continued to light up our lives with his infectious smile and his contagious giggles. Every day he would continuously impress me with how smart he was and how sociable he was growing to be. Around the age of 3, Henry began to detach from me and the rest of our family, engage less with others and regress with his language. He began to develop anxiety and obsessive habits. Aggressive behaviors began to develop and increase at a rapid speed and my sweet and perfect little boy became a completely different child. January 9th, 2015 Henry received a diagnosis of Autism. At the time, this diagnosis we had received opened doors for treatment and I began reaching out to find any available service that could help Henry have as normal of a life as possible. Through the years, I had figured out ways to control and help Henry through rough moments, but as he got older, he also got stronger.
The aggressive behaviors were mostly managed but moments would come that class rooms would have to be evacuated for the safety of the other children, or he would need to be transported into the safe room in the school. There would be times when I would have to use my body as a shield to protect another family member, or to protect him from hurting himself during a meltdown. Not a week went by that I did not receive several phone calls from the school, asking if I knew any tricks to help get him out of his meltdowns. It was hard for me to understand why my child that I just KNEW had a heart of gold was behaving this way. Something that breaks my heart to this day is the look in his eyes when he is engaging in the unsafe behavior. It is almost as though he is begging for help because he genuinely does not want to be doing what he is doing but he cannot stop. This led to many tearful and broken moments for the both of us.
In June of 2020, Henry's behavioral health doctor sent him for some bloodwork to confirm his suspicions, and it was then that Henry was diagnosed with a condition called PANDAS. PANDAS is an acronym for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. Some of the many horrible symptoms of PANDAS include OCD, intense mood changes, anxiety, ADHD, trouble sleeping, bed wetting, changes in motor skills, and the list goes on and on. When Henry was 2.5 years old, he had contracted strep throat two times back to back. After having an adverse reaction to the amoxicillin, with the doctors approval, I stopped the antibiotic. While the strep had appeared to be gone, it had remained inside of his body. The infection then went into his bloodstream, and then infected his brain.
The diagnosis of PANDAS was one that came with many emotions. Did this mean he would live a normal life? Should I start thinking about his future further than the next day? Will he live independently after treatment? The questions were endless but after a brief moment of hope, I began researching treatment options. 5 years of this was long enough and I did not want to wait one more second. As it turns out, PANDAS is a newly recognized medical condition and the treatments are not covered by insurance.
The PANDAS doctor located in our area happens to be Dr. M. Elizabeth Latimer. Dr. Latimer is a neurologist who has been at the forefront of PANDAS research and treatment and she continues to make a critical difference in the lives of children all over the world. The recommended treatment plan started with a long course of antibiotics 2x a day. We are currently on the second 30-day round.
The next step is IVIG (Intravenous Immune Globulin). IVIG will help his antibodies behave properly and help him feel better. Most children will need two or three treatments, which is consistent with what we were told by Dr. Latimer. Each treatment will have Henry hooked up to an IV for 6 hours a day for 2 days. This treatment will then be followed with an intravenous drug called Rituxan which is another antibody medication and an anti inflammatory.
Here is where Henry and I need your help. Each IVIG treatment will cost $13,000 which includes the cost of travel, and the hotel stay. The Rituxan treatment that follows is $16,000 per treatment, however, there is a chance that the medication portion of the fee will be waived and each treatment will then only cost $5,000.
As you can imagine, hearing these large numbers and being told that Henry will need multiple treatments at this cost is a very daunting thought. I am one that does not ask for help, so this is not something I have decided to do without a lot of thought, many tears and a whole lot of encouragement from my support system. We all just want Henry to feel better and to live as normal of a life as possible.
If you are unable to donate, please share this link. If there are funds left over, I intend to donate them to the Alex Manfull Memorial Fund (link to the website below).
Every little bit helps us get one step closer to Healing Henry.
Follow our journey on Facebook!!
https://www.facebook.com/healinghenrydavis/
Thank you!
Here are some links to check out:
http://pandasnetwork.org/
http://pandasnetwork.org/alex-manfull-memorial-fund/
https://www.amazon.com/Pickle-Over-PANDAS-Melanie-Weiss-ebook/dp/B00YT9IFSM
https://www.bethlatimermd.com/our-services/pans-pandas-2/
The aggressive behaviors were mostly managed but moments would come that class rooms would have to be evacuated for the safety of the other children, or he would need to be transported into the safe room in the school. There would be times when I would have to use my body as a shield to protect another family member, or to protect him from hurting himself during a meltdown. Not a week went by that I did not receive several phone calls from the school, asking if I knew any tricks to help get him out of his meltdowns. It was hard for me to understand why my child that I just KNEW had a heart of gold was behaving this way. Something that breaks my heart to this day is the look in his eyes when he is engaging in the unsafe behavior. It is almost as though he is begging for help because he genuinely does not want to be doing what he is doing but he cannot stop. This led to many tearful and broken moments for the both of us.
In June of 2020, Henry's behavioral health doctor sent him for some bloodwork to confirm his suspicions, and it was then that Henry was diagnosed with a condition called PANDAS. PANDAS is an acronym for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. Some of the many horrible symptoms of PANDAS include OCD, intense mood changes, anxiety, ADHD, trouble sleeping, bed wetting, changes in motor skills, and the list goes on and on. When Henry was 2.5 years old, he had contracted strep throat two times back to back. After having an adverse reaction to the amoxicillin, with the doctors approval, I stopped the antibiotic. While the strep had appeared to be gone, it had remained inside of his body. The infection then went into his bloodstream, and then infected his brain.
The diagnosis of PANDAS was one that came with many emotions. Did this mean he would live a normal life? Should I start thinking about his future further than the next day? Will he live independently after treatment? The questions were endless but after a brief moment of hope, I began researching treatment options. 5 years of this was long enough and I did not want to wait one more second. As it turns out, PANDAS is a newly recognized medical condition and the treatments are not covered by insurance.
The PANDAS doctor located in our area happens to be Dr. M. Elizabeth Latimer. Dr. Latimer is a neurologist who has been at the forefront of PANDAS research and treatment and she continues to make a critical difference in the lives of children all over the world. The recommended treatment plan started with a long course of antibiotics 2x a day. We are currently on the second 30-day round.
The next step is IVIG (Intravenous Immune Globulin). IVIG will help his antibodies behave properly and help him feel better. Most children will need two or three treatments, which is consistent with what we were told by Dr. Latimer. Each treatment will have Henry hooked up to an IV for 6 hours a day for 2 days. This treatment will then be followed with an intravenous drug called Rituxan which is another antibody medication and an anti inflammatory.
Here is where Henry and I need your help. Each IVIG treatment will cost $13,000 which includes the cost of travel, and the hotel stay. The Rituxan treatment that follows is $16,000 per treatment, however, there is a chance that the medication portion of the fee will be waived and each treatment will then only cost $5,000.
As you can imagine, hearing these large numbers and being told that Henry will need multiple treatments at this cost is a very daunting thought. I am one that does not ask for help, so this is not something I have decided to do without a lot of thought, many tears and a whole lot of encouragement from my support system. We all just want Henry to feel better and to live as normal of a life as possible.
If you are unable to donate, please share this link. If there are funds left over, I intend to donate them to the Alex Manfull Memorial Fund (link to the website below).
Every little bit helps us get one step closer to Healing Henry.
Follow our journey on Facebook!!
https://www.facebook.com/healinghenrydavis/
Thank you!
Here are some links to check out:
http://pandasnetwork.org/
http://pandasnetwork.org/alex-manfull-memorial-fund/
https://www.amazon.com/Pickle-Over-PANDAS-Melanie-Weiss-ebook/dp/B00YT9IFSM
https://www.bethlatimermd.com/our-services/pans-pandas-2/