Recovering Charlotte: A PANS/PANDAS Story
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Recovering Charlotte: A PANS/PANDAS Story
In September, the sweet 7 year old girl we knew disappeared abruptly. We had some signs leading up to September as our world felt it was getting smaller and smaller and more and more challenging with her. We had no idea what was happening.
We were baffled. Our sweet, loving, silly, playful little girl who loved life, the world, other people and playing with her friends and trying new things HAD DISAPPEARED. What we were seeing instead was a rage filled, anxiety ridden girl, who was scared to go out into the world, refused to wear clothes, refused to see anyone other than my husband and I. Her separation anxiety and unexpected rage episodes and violent outburst where scary and we knew it wasn't her but we had no idea what had caused this sudden and COMPLETE CHANGE IN PERSONALITY almost overnight.
After 6 months and the help of some incredible angles (tremendous gratitude) we finally know what was happening to our amazing Charlotte. She has something called PANS/PANDAS ( or Autoimmune encephalitis) Syndrome caused by Lyme and 3 other co-infections causing all of her neurological symptoms. Basically her brain is on fire, causing all of these neurological symptoms including agoraphobia, separation anxiety, panic attacks, bouts of rage and violence, severe OCD including severe food restriction, ticks, inability to sleep, wear clothes, touch people, go out in public, as well as huge regression in the reading in math. All of these are caused by the infection. There are so many symptoms, that this disorder is often misdiagnosed (we thought it was ASD) before families find out the truth. We are lucky. We now have doctors, a treatment plan, a network of brilliant moms who are willing to share their kiddos story and lot of HOPE. We are no longer alone and we can share our story to hopefully help others. PANS (Pediatric Acute-onset Neuropsychiatric Syndrome ) is often misdiagnosed and over medicated and under tested for. We are so grateful to all of all the families that came before us because of their willingness to share their stories to help others find answers. Because of their bravery we were able to find help only after 6 months and have diagnosis and a path to recovery. Others have taken years to discover what was going on.
Charlotte is so excited to know that she is going to GET BETTER!!! This whole time she never gave up HOPE. She would often say, “when I get better I’m going to build my tree house with Sam.” Or “when I get better, I’m going to the fair.” She had to miss so many of her favorite things because of this condition, that is affecting so many children in Maine and all over the world. Charlotte’s hope for herself kept us going even when it felt like things would never change.
One of the symptoms of PANS is severe separation anxiety. Because of this Sarah chose to take a leave of absence from her Access Bars & Bodywork practice in September to be home with Charlotte full time. She has been completely home bound since September. We had no idea how much this choice would be such a gift to Charlotte and how lucky we are that this was a choice we could make. Because of this choice we are now a 1 income family. With an emergency room visit, blood tests, doctors visits and all the out of pocket medical expenses connected to this healing journey, we are left drained of resources and asking for help.
And, with all of that said we are lucky to have a doctor in Maine who treats for PANS/Pandas, as not many doctors treat for this condition. So here is the catch, MOST of her treatments are NOT COVERED BY INSURANCE. Everything is out of pocket and we’ve already blown through our HSA. So we humbly ask for your contribution to recovering Charlotte. Your contribution will allow her to have the medicine and support that her body requires to heal completely. The duration of her treatment is uncertain at this time as each case of this condition is different like a snowflake. We are choosing a combination of traditional & holistic & energy medicine to contribute to her recovery. And as you all know natural medicine is often not covered by insurance either. To give Charlotte the care and help she requires without the stress of having to choose based on money would be such a gift. This fund will allow us to go to the doctors that she needs without worrying about not being able to pay or having to say no because we just don’t have the money. We may have to eventually travel to see some specialists out of state as well. The path is unpredictable and challenging and also beautiful healing experience for all of us full and of hope & love. Charlotte is a magical force in all of this!
We, Pete & Sarah, and Charlotte, desire to give back and share her story to help others find help even sooner than we did. It was a mystery that we now know she'll recover from.
Thank you for your contribution to Recovering Charlotte.
With so much LOVE, APPRECIATION and GRATITUDE,
THANK YOU! THANK YOU! THANK YOU! From the bottom of our HEARTS!
PETE, SARAH & CHARLOTTE
In September, the sweet 7 year old girl we knew disappeared abruptly. We had some signs leading up to September as our world felt it was getting smaller and smaller and more and more challenging with her. We had no idea what was happening.
We were baffled. Our sweet, loving, silly, playful little girl who loved life, the world, other people and playing with her friends and trying new things HAD DISAPPEARED. What we were seeing instead was a rage filled, anxiety ridden girl, who was scared to go out into the world, refused to wear clothes, refused to see anyone other than my husband and I. Her separation anxiety and unexpected rage episodes and violent outburst where scary and we knew it wasn't her but we had no idea what had caused this sudden and COMPLETE CHANGE IN PERSONALITY almost overnight.
After 6 months and the help of some incredible angles (tremendous gratitude) we finally know what was happening to our amazing Charlotte. She has something called PANS/PANDAS ( or Autoimmune encephalitis) Syndrome caused by Lyme and 3 other co-infections causing all of her neurological symptoms. Basically her brain is on fire, causing all of these neurological symptoms including agoraphobia, separation anxiety, panic attacks, bouts of rage and violence, severe OCD including severe food restriction, ticks, inability to sleep, wear clothes, touch people, go out in public, as well as huge regression in the reading in math. All of these are caused by the infection. There are so many symptoms, that this disorder is often misdiagnosed (we thought it was ASD) before families find out the truth. We are lucky. We now have doctors, a treatment plan, a network of brilliant moms who are willing to share their kiddos story and lot of HOPE. We are no longer alone and we can share our story to hopefully help others. PANS (Pediatric Acute-onset Neuropsychiatric Syndrome ) is often misdiagnosed and over medicated and under tested for. We are so grateful to all of all the families that came before us because of their willingness to share their stories to help others find answers. Because of their bravery we were able to find help only after 6 months and have diagnosis and a path to recovery. Others have taken years to discover what was going on.
Charlotte is so excited to know that she is going to GET BETTER!!! This whole time she never gave up HOPE. She would often say, “when I get better I’m going to build my tree house with Sam.” Or “when I get better, I’m going to the fair.” She had to miss so many of her favorite things because of this condition, that is affecting so many children in Maine and all over the world. Charlotte’s hope for herself kept us going even when it felt like things would never change.
One of the symptoms of PANS is severe separation anxiety. Because of this Sarah chose to take a leave of absence from her Access Bars & Bodywork practice in September to be home with Charlotte full time. She has been completely home bound since September. We had no idea how much this choice would be such a gift to Charlotte and how lucky we are that this was a choice we could make. Because of this choice we are now a 1 income family. With an emergency room visit, blood tests, doctors visits and all the out of pocket medical expenses connected to this healing journey, we are left drained of resources and asking for help.
And, with all of that said we are lucky to have a doctor in Maine who treats for PANS/Pandas, as not many doctors treat for this condition. So here is the catch, MOST of her treatments are NOT COVERED BY INSURANCE. Everything is out of pocket and we’ve already blown through our HSA. So we humbly ask for your contribution to recovering Charlotte. Your contribution will allow her to have the medicine and support that her body requires to heal completely. The duration of her treatment is uncertain at this time as each case of this condition is different like a snowflake. We are choosing a combination of traditional & holistic & energy medicine to contribute to her recovery. And as you all know natural medicine is often not covered by insurance either. To give Charlotte the care and help she requires without the stress of having to choose based on money would be such a gift. This fund will allow us to go to the doctors that she needs without worrying about not being able to pay or having to say no because we just don’t have the money. We may have to eventually travel to see some specialists out of state as well. The path is unpredictable and challenging and also beautiful healing experience for all of us full and of hope & love. Charlotte is a magical force in all of this!
We, Pete & Sarah, and Charlotte, desire to give back and share her story to help others find help even sooner than we did. It was a mystery that we now know she'll recover from.
Thank you for your contribution to Recovering Charlotte.
With so much LOVE, APPRECIATION and GRATITUDE,
THANK YOU! THANK YOU! THANK YOU! From the bottom of our HEARTS!
PETE, SARAH & CHARLOTTE
Co-organizers (5)
Sarah Arrand Heeley
Organizer
South Portland, ME
Susan DeQuattro
Co-organizer
Hillary Barone
Co-organizer
Jessica McNeil
Co-organizer
Pete Heeley
Co-organizer