Hope for Evie - healing for her brain
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In April 2013 our world was turned upside down by a little known neurological condition known as PANDAS (Paediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus). Two months shy of our daughters fifth birthday, her personality appeared to suddenly change. She became unusually irritable, was emotionally labile and had frequent temper tantrums. She developed sensory issues with socks and underwear. Her sleep was disturbed, she had incontinence episodes and developed significant separation anxiety.
Little did we know that this was just the start of our PANDAS journey and things were going to get significantly worse for Evie before we could get a diagnosis and start treatment. Fourteen months after the initial episode we again witnessed a sudden acute behavioural change in Evie - she literally developed OCD overnight. She had a sudden obsession with going to the toilet. She spent long periods sat on the toilet, wiped excessively and had to repeatedly return to the toilet many times. She was six years old at the time and the obsession with the toilet and compulsion to return many times literally took over her life. It became impossible to leave the house, she was terrified to go to school because of how much time she needed to spend in the bathroom and refused to travel anywhere longer than a 5 minute car ride ‘in case’ she needed the toilet. She was tormented day and night by irrational fears and strange compulsions.
Over the following months and years more and more symptoms appeared and we gradually saw our amazing little girl disappear before our very eyes. OCD; separation anxiety; tics; generalised anxiety; restricted food intake; emotional liability; sensory abnormalities; rage; oppositional defiance; handwriting deterioration; behavioural regression and depression. Life was horrendous but we were so alone and felt completely helpless watching our daughter suffer every day. We could find no one who had even heard of the condition let alone who was able to treat it.
Over four years after onset of the symptoms, we finally found clinicians who could help. Initially we paid for private consultations from a specialist in California who diagnosed PANDAS. She offered a treatment plan and strongly stressed the urgency of treating this aggressively. Evie’s immune system was attacking her brain! It was made quite clear that a four year delay in receiving a diagnosis meant that time was not on our side and we were told that everyday the brain inflammation was getting worse. Shortly after this Evie was formally diagnosed with PANDAS by an NHS clinician and treatment was finally started. Unfortunately however, things were going to get worse before they got better and by the end of 2017 the illness had completely took hold of Evie.
Our little girl was in a constant state of fight or flight. She was agitated and physically aggressive. Was completely unable to concentrate or make any decision. She was permanently on edge, unable to relax or play. Pacing the house; rocking on the floor. There was unprovoked crying and screaming for long periods. She had panic attacks and worried excessively about everything. Her language regressed to the point that she was no longer able to use full sentences. She completely refused to comply with activities of daily living and at times became really hyperactive and giddy. She was fatigued and exhausted but still felt the need to spend hours of her day stood upside down on her hands. She was terrified of herself and how she was feeling. We tried everything but nothing seemed to help. This was not our daughter!
Evie was receiving treatment in the form of anti- inflammatories and long term antibiotics but she was deteriorating rapidly so a course of steroids were prescribed… they provided considerable relief by reducing the amount of swelling in Evie’s brain but only for a few weeks. Something more was needed.
By this point, Evie’s separation anxiety had become so bad that she had not attended school for several months and was terrified to leave my side even within our own home. Her OCD consumed every hour of her waking day and was completely debilitating; she was unable to open any doors, cupboards, draws; would not touch communal surfaces and was even frightened to put her feet on the ground; she completely lost the ability to read due to having a compulsion to read and re-read every sentence over and over again dozens of times; she spent several hours of her day scrubbing her hands and arms until they bled and would become stuck in a repetitive and distressing cycle of wiping herself every time she went to use the bathroom. All independence and quality of life was lost - Evie could not bring herself to touch or hold anything to the point that she stopped using her hands completely. She was begging us to help her. Worse than all of this was the food restriction. Evie was terrified of anything at all going into her body and spent hours and hours every day dissecting meals and snacks into tiny pieces before refusing to eat any of it. She cried daily that she was hungry but yet she was unable to eat anything and in total lost 17 percent of her body weight. It was heartbreaking to watch.
She was literally wasting away in front of us. Our daughter was tired, emotional, frightened and distressed and her quality of life was practically none existent…. and then came the miracle of a treatment known as Intro-venous Immunoglobulins (IVIG), an infusion of antibodies from thousands of donors designed to reset Evie’s immune system and stop her own antibodies from attacking her brain. It was given over the course of two days in an NHS hospital and the results we had were amazing. Evie started eating again for the first time in months - slowly at first with lots of dissecting and reassurance required but overtime this has continued to improve and she now has a healthy appetite and is physically thriving again. A second IVIG treatment six months later resulted in further improvements… Evie’s anxiety levels and OCD have become more manageable to the point that she is now able to attend school with a tutor for short periods and can enjoy playing outdoors with her friends.
However, despite these improvements, Evie still has a long way to go. She still struggles immensely with anxiety and OCD behaviours which are both distressing and debilitating for her. Brain fog is a major issue and as such her concentration and focus is restricting any academic progress when she is well enough to be in school. The biggest problem however, is her faulty immune system which attacks her brain and causes further setbacks and flares every time she is exposed to any toxin or infection. Evie’s neurologist believes that further improvements will be made with further treatments but unfortunately the application for a third IVIG has been declined by the NHS due to cost and supply issues and we are now desperately seeking alternatives.
To stand any chance of beating this illness, recovering her brain and heeling her immune system, Evie needs more intensive treatments. While we are challenging the recent NHS decision to decline further treatment, we need to be realistic and look at other options. Costs of IVIG in this country can be very high and it is unclear how many rounds of treatment Evie will require. We may be forced to take her abroad for treatment and in addition to this we are also looking into alternative therapies such as oxygen therapy, low dose immune therapy, Cognitive behavioural therapy and the services of a good functional doctor.
Having been forced to give up a career to care for Evie around the clock, we are asking for support to fund Evie’s next phase of recovery. If you can help in any way, big or small , your contribution to save our little girl and allow her to enjoy what is left of her childhood would be very much appreciated. Thank you.
Little did we know that this was just the start of our PANDAS journey and things were going to get significantly worse for Evie before we could get a diagnosis and start treatment. Fourteen months after the initial episode we again witnessed a sudden acute behavioural change in Evie - she literally developed OCD overnight. She had a sudden obsession with going to the toilet. She spent long periods sat on the toilet, wiped excessively and had to repeatedly return to the toilet many times. She was six years old at the time and the obsession with the toilet and compulsion to return many times literally took over her life. It became impossible to leave the house, she was terrified to go to school because of how much time she needed to spend in the bathroom and refused to travel anywhere longer than a 5 minute car ride ‘in case’ she needed the toilet. She was tormented day and night by irrational fears and strange compulsions.
Over the following months and years more and more symptoms appeared and we gradually saw our amazing little girl disappear before our very eyes. OCD; separation anxiety; tics; generalised anxiety; restricted food intake; emotional liability; sensory abnormalities; rage; oppositional defiance; handwriting deterioration; behavioural regression and depression. Life was horrendous but we were so alone and felt completely helpless watching our daughter suffer every day. We could find no one who had even heard of the condition let alone who was able to treat it.
Over four years after onset of the symptoms, we finally found clinicians who could help. Initially we paid for private consultations from a specialist in California who diagnosed PANDAS. She offered a treatment plan and strongly stressed the urgency of treating this aggressively. Evie’s immune system was attacking her brain! It was made quite clear that a four year delay in receiving a diagnosis meant that time was not on our side and we were told that everyday the brain inflammation was getting worse. Shortly after this Evie was formally diagnosed with PANDAS by an NHS clinician and treatment was finally started. Unfortunately however, things were going to get worse before they got better and by the end of 2017 the illness had completely took hold of Evie.
Our little girl was in a constant state of fight or flight. She was agitated and physically aggressive. Was completely unable to concentrate or make any decision. She was permanently on edge, unable to relax or play. Pacing the house; rocking on the floor. There was unprovoked crying and screaming for long periods. She had panic attacks and worried excessively about everything. Her language regressed to the point that she was no longer able to use full sentences. She completely refused to comply with activities of daily living and at times became really hyperactive and giddy. She was fatigued and exhausted but still felt the need to spend hours of her day stood upside down on her hands. She was terrified of herself and how she was feeling. We tried everything but nothing seemed to help. This was not our daughter!
Evie was receiving treatment in the form of anti- inflammatories and long term antibiotics but she was deteriorating rapidly so a course of steroids were prescribed… they provided considerable relief by reducing the amount of swelling in Evie’s brain but only for a few weeks. Something more was needed.
By this point, Evie’s separation anxiety had become so bad that she had not attended school for several months and was terrified to leave my side even within our own home. Her OCD consumed every hour of her waking day and was completely debilitating; she was unable to open any doors, cupboards, draws; would not touch communal surfaces and was even frightened to put her feet on the ground; she completely lost the ability to read due to having a compulsion to read and re-read every sentence over and over again dozens of times; she spent several hours of her day scrubbing her hands and arms until they bled and would become stuck in a repetitive and distressing cycle of wiping herself every time she went to use the bathroom. All independence and quality of life was lost - Evie could not bring herself to touch or hold anything to the point that she stopped using her hands completely. She was begging us to help her. Worse than all of this was the food restriction. Evie was terrified of anything at all going into her body and spent hours and hours every day dissecting meals and snacks into tiny pieces before refusing to eat any of it. She cried daily that she was hungry but yet she was unable to eat anything and in total lost 17 percent of her body weight. It was heartbreaking to watch.
She was literally wasting away in front of us. Our daughter was tired, emotional, frightened and distressed and her quality of life was practically none existent…. and then came the miracle of a treatment known as Intro-venous Immunoglobulins (IVIG), an infusion of antibodies from thousands of donors designed to reset Evie’s immune system and stop her own antibodies from attacking her brain. It was given over the course of two days in an NHS hospital and the results we had were amazing. Evie started eating again for the first time in months - slowly at first with lots of dissecting and reassurance required but overtime this has continued to improve and she now has a healthy appetite and is physically thriving again. A second IVIG treatment six months later resulted in further improvements… Evie’s anxiety levels and OCD have become more manageable to the point that she is now able to attend school with a tutor for short periods and can enjoy playing outdoors with her friends.
However, despite these improvements, Evie still has a long way to go. She still struggles immensely with anxiety and OCD behaviours which are both distressing and debilitating for her. Brain fog is a major issue and as such her concentration and focus is restricting any academic progress when she is well enough to be in school. The biggest problem however, is her faulty immune system which attacks her brain and causes further setbacks and flares every time she is exposed to any toxin or infection. Evie’s neurologist believes that further improvements will be made with further treatments but unfortunately the application for a third IVIG has been declined by the NHS due to cost and supply issues and we are now desperately seeking alternatives.
To stand any chance of beating this illness, recovering her brain and heeling her immune system, Evie needs more intensive treatments. While we are challenging the recent NHS decision to decline further treatment, we need to be realistic and look at other options. Costs of IVIG in this country can be very high and it is unclear how many rounds of treatment Evie will require. We may be forced to take her abroad for treatment and in addition to this we are also looking into alternative therapies such as oxygen therapy, low dose immune therapy, Cognitive behavioural therapy and the services of a good functional doctor.
Having been forced to give up a career to care for Evie around the clock, we are asking for support to fund Evie’s next phase of recovery. If you can help in any way, big or small , your contribution to save our little girl and allow her to enjoy what is left of her childhood would be very much appreciated. Thank you.
Organizer
Helen Prior
Organizer
