Help for Annabella
Donation protected
Annabella was born October 12, 2013. She quickly grew into a loving and lovable little girl. She was precocious, smart, fun, and funny. She looked you in the eye when she spoke to you. She confidently walked into a room assuming that everyone was on her side and that they were delighted to see her and it was true – she lit up the room with her joy for life.
Annabella was born to my cousin Becky. Being a single mom is hard but Becky has an amazing support network in her parents and her sister and brother-in-law. With their support Annabella was not lacking for love and guidance. She was ahead of her class in Senior Kindergarten, accurately and carefully printing her name and short sentences. I observed Becky balancing what we all try to balance as parents: structure and firmness while still allowing for fun, expectations of age-appropriate behaviour while still allowing for silliness. Becky, who is trained to cut and style hair, opened her own business in her parents’ basement to allow her to have more time with her child. Everyone was thriving.
During the fall of 2018 Annabella became ill and was diagnosed with Strep Throat. She was treated with antibiotics but for some reason the infection kept coming back. She would be diagnosed three more times with strep throat in a very short period of time. Something was wrong. About three weeks later Annabella changed. She would be listless one moment and then extremely agitated and violently aggressive the next. She would hurt her herself and others around her while in the midst of an episode of anger. She could no longer self-regulate and was overwhelmed by any high sensory stimulation (different people, smells, lights and sounds). Going out in public is now out of the question. When not in a rage she would sometimes have a vacant look in her eyes as if she wasn’t there. Her fine motor skills became almost non-existent. She could no longer perform simple tasks such as using scissors or printing letters. What marks she could make were illegible. Shapes crammed on one side of a page while letters were scrawled helter-skelter with no meaning. She started needing to use the washroom 15 - 20 times a day. She cannot sleep through the night without waking up several times. Her body twitches uncontrollably. In the span of 2 months she lost 15 pounds.
One small miracle that has come out of this struggle is that Annabella’s pediatrician was trained in India and the UK. Dr Porwal was able to diagnose Annabella with a disease called Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep (PANDAS) which is recognized in the UK and treated. (It is also treated in some areas of the US). There is limited treatment available in Canada, however, because the Ministry of Health does not recognize the disease, it is not covered and wait lists for specialists are, in some cases, 3 years long.
PANDAS is a condition in which the Strep virus passes the blood-brain barrier and the autoimmune system begins to attack the basal ganglia of the brain in an attempt to eradicate the virus and fails to switch off. If left untreated, symptoms of PANDAS may continue to worsen and can result in permanent cognitive damage. Think of an athlete who suffers life-long effects from multiple concussions. For some children, PANDAS can become a chronic autoimmune condition.
Once Dr. Porwal suspected PANDAS he ordered a number of tests including a Strep antibody test. A normal average Strep antibody level in an adult should be 150 or less if you’ve had the strep virus in the last 3 months. Annabella’s was 518.
Annabella has been referred to a specialist, Dr Wilson, in British Columbia after the only Ontario-based specialist (Dr. Edwards) closed her 3 year wait list.
The following treatment has been prescribed for Annabella:
- 9 weeks of antibiotics. This medication must be picked up weekly and administered within 2 hours of a pro-biotic.
- Yeast statin 3 times a day for 2 weeks
- 4 probiotics every day for the duration of the treatment
- Rescue remedy - a herbal supplement to help ease anxiety brought on by the disease
- Quietitude - a herbal supplement to help ease irritability 3 times a day
Today, Annabella has good and bad days. Her mother doesn’t know what each day will be like. Since Annabella is considered immune-compromised she cannot attend school since she is now highly susceptible to infection and infection triggers an immune response that causes damage to her brain. Becky is trying to provide tutoring and some semblance of a normal life for her daughter. For a single mother this is a very heavy burden. In terms of long-term prognosis, girls have a higher chance of full recovery. However, even after a child has been deemed no longer immune-compromised or in full remission from PANDAS there can still be long-lasting brain damage.
I would like to propose that we do something to help Becky and Annabella. This is not something one can prepare for. The financial support we can provide will go toward medication, childcare costs and additional educational resources (one-on-one tutoring, yoga, other one-on-one therapies/activities (Annabella cannot be around other children).
For more information about PANDAS: https://www.nimh.nih.gov/health/publications/pandas/index.shtml
Annabella was born to my cousin Becky. Being a single mom is hard but Becky has an amazing support network in her parents and her sister and brother-in-law. With their support Annabella was not lacking for love and guidance. She was ahead of her class in Senior Kindergarten, accurately and carefully printing her name and short sentences. I observed Becky balancing what we all try to balance as parents: structure and firmness while still allowing for fun, expectations of age-appropriate behaviour while still allowing for silliness. Becky, who is trained to cut and style hair, opened her own business in her parents’ basement to allow her to have more time with her child. Everyone was thriving.
During the fall of 2018 Annabella became ill and was diagnosed with Strep Throat. She was treated with antibiotics but for some reason the infection kept coming back. She would be diagnosed three more times with strep throat in a very short period of time. Something was wrong. About three weeks later Annabella changed. She would be listless one moment and then extremely agitated and violently aggressive the next. She would hurt her herself and others around her while in the midst of an episode of anger. She could no longer self-regulate and was overwhelmed by any high sensory stimulation (different people, smells, lights and sounds). Going out in public is now out of the question. When not in a rage she would sometimes have a vacant look in her eyes as if she wasn’t there. Her fine motor skills became almost non-existent. She could no longer perform simple tasks such as using scissors or printing letters. What marks she could make were illegible. Shapes crammed on one side of a page while letters were scrawled helter-skelter with no meaning. She started needing to use the washroom 15 - 20 times a day. She cannot sleep through the night without waking up several times. Her body twitches uncontrollably. In the span of 2 months she lost 15 pounds.
One small miracle that has come out of this struggle is that Annabella’s pediatrician was trained in India and the UK. Dr Porwal was able to diagnose Annabella with a disease called Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep (PANDAS) which is recognized in the UK and treated. (It is also treated in some areas of the US). There is limited treatment available in Canada, however, because the Ministry of Health does not recognize the disease, it is not covered and wait lists for specialists are, in some cases, 3 years long.
PANDAS is a condition in which the Strep virus passes the blood-brain barrier and the autoimmune system begins to attack the basal ganglia of the brain in an attempt to eradicate the virus and fails to switch off. If left untreated, symptoms of PANDAS may continue to worsen and can result in permanent cognitive damage. Think of an athlete who suffers life-long effects from multiple concussions. For some children, PANDAS can become a chronic autoimmune condition.
Once Dr. Porwal suspected PANDAS he ordered a number of tests including a Strep antibody test. A normal average Strep antibody level in an adult should be 150 or less if you’ve had the strep virus in the last 3 months. Annabella’s was 518.
Annabella has been referred to a specialist, Dr Wilson, in British Columbia after the only Ontario-based specialist (Dr. Edwards) closed her 3 year wait list.
The following treatment has been prescribed for Annabella:
- 9 weeks of antibiotics. This medication must be picked up weekly and administered within 2 hours of a pro-biotic.
- Yeast statin 3 times a day for 2 weeks
- 4 probiotics every day for the duration of the treatment
- Rescue remedy - a herbal supplement to help ease anxiety brought on by the disease
- Quietitude - a herbal supplement to help ease irritability 3 times a day
Today, Annabella has good and bad days. Her mother doesn’t know what each day will be like. Since Annabella is considered immune-compromised she cannot attend school since she is now highly susceptible to infection and infection triggers an immune response that causes damage to her brain. Becky is trying to provide tutoring and some semblance of a normal life for her daughter. For a single mother this is a very heavy burden. In terms of long-term prognosis, girls have a higher chance of full recovery. However, even after a child has been deemed no longer immune-compromised or in full remission from PANDAS there can still be long-lasting brain damage.
I would like to propose that we do something to help Becky and Annabella. This is not something one can prepare for. The financial support we can provide will go toward medication, childcare costs and additional educational resources (one-on-one tutoring, yoga, other one-on-one therapies/activities (Annabella cannot be around other children).
For more information about PANDAS: https://www.nimh.nih.gov/health/publications/pandas/index.shtml
Organizer and beneficiary
Kelly Palmer
Organizer
Toronto, ON
Rebecca Aldridge
Beneficiary