Our Daughter's PANS Life Threatening Encephalitis
Donation protected
Sofia’s Story
Seventeen years ago we were blessed with an incredible gift, the birth of our beautiful and healthy daughter, Sofia. She was a perfect little sister for her four year old brother Matteo who along with us adored and loved her. Three years later, another little sister named Ava, came along. We were a perfect family! Like every regular family, our three children were our pride as they grew and learned like little sponges.
Soon, it was time for Sofia to start school. She was always a somewhat reserved and shy little girl but she achieved excellent grades and made many friends. She also did very well in her extra curricular activities. When she was in grade 3, we moved to Bonnyville for her dad’s work. She adjusted well to her new school, École des Beaux Lacs, a francophone school. The following three years were normal and she was a delightful well adjusted little girl. Her grade 6 year was amazing. She passed with straight A's. During the summer between grade 6 and 7, she suddenly started showing signs of OCD, severe tics, separation anxiety, poor sleeping, slurred speech, and trouble walking.
Within weeks, her health deteriorated very quickly. She developed many more telltale signs that things weren’t normal. At times her OCD, tics and behavioural abnormalities worsened to the point where it was impossible for her to attend school. She complained of blacking out and not being able to understand and follow the teacher’s instructions . She became more reclusive and didn’t want to go to school. During the next few years, with lots of coaxing, she attended school sporadically and continued with her extra curricular activities such as Ukrainian dancing and violin lessons only when she was well. During these years we saw our family doctor many times who was just as baffled as we were with her condition.
We were continually researching on the internet for answers. We came across the illness called PANDAS, an acronym for Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infection. It made sense as she had all the symptoms and a very rapid onset. Around that same time, we were referred to Mental Health Services here in Bonnyville. They arranged video conferencing sessions with a psychiatrist. We went a few times but we knew she needed more serious intervention. Eventually, we were accepted at the Glenrose Hospital in Edmonton where she saw an excellent psychiatrist Dr Carrol who, with all Sofia's prior history, suspected this was an autoimmune in nature. At that time PANDAS was not well known and many doctors didn’t believe it really existed. Because the symptoms appeared to be psychological, she was prescribed SSRIs, antipsychotics, and much more. Later, they added antibiotics and we were advised to go gluten free. This seemed to help but she was never really well. Every time that she got sick or her immune system was triggered, all her neurological symptoms would come roaring back.
Soon after, we were referred to a paediatrician, Dr McGonigle at the Stollery Children’s Hospital who worked closely with Dr Carrol (now retired). After his retirement, Dr Hodlevskyy took over. It was under their care that Sofia received many IVIGs that kept the illness at bay for a while.
As the years went by, she has had many relapses. We did our best to help her get through her worst moments which were many. She went to school intermittently and we tried to catch her up with her studies at home. This year, her graduating year, she has not been able to attend school at all. She has spent the best years of her youth suffering and struggling with this very debilitating condition! If you want to know what these children and their families go through, read “A Father’s Thoughts” on the PANDAS Network. Here is the link.
http://pandasnetwork.org/2018/07/a-fathers-thoughts/
Besides having a paediatrician and a psychiatrist, she has now an immunologist and a neurologist on board treating her. These last few months, her health has deteriorated so badly that it became life threatening. In January she was hospitalized at the Stollery Children’s hospital where she was treated with five plasmapheresis infusions. At first, it seemed to work. We were so happy to have her back as a normal, intelligent 17 year old. However, a little over a couple of weeks later, she relapsed. Now we have no choice but to resort asking for a treatment called Rituximab. This medication is mainly used for rheumatoid arthritis, and cancer of the B-cells. In the United States, they also use it for many autoimmune disorders including PANDAS and PANS. However, here in Canada, Alberta Health does not allow it to be given for this illness. We think it has to do with the cost. Recently, she had been hospitalized in a psychiatric ward where she continued to suffer and take up a very costly bed in order to keep her safe while we wait for approval.
In the meantime, all we can do is pray that it won’t be long before she can receive this treatment. Otherwise, we will have no choice but to pursue paying out of pocket for this expensive medication. I have not been able to work for the many years as I am her primary care giver and this is such a demanding condition . The cost of going to Edmonton at least twice a month for Doctors appointments has also stretched the pocketbook to a breaking point. We ask for your understanding and your generosity. All we want is to have our daughter healthy again.
Seventeen years ago we were blessed with an incredible gift, the birth of our beautiful and healthy daughter, Sofia. She was a perfect little sister for her four year old brother Matteo who along with us adored and loved her. Three years later, another little sister named Ava, came along. We were a perfect family! Like every regular family, our three children were our pride as they grew and learned like little sponges.
Soon, it was time for Sofia to start school. She was always a somewhat reserved and shy little girl but she achieved excellent grades and made many friends. She also did very well in her extra curricular activities. When she was in grade 3, we moved to Bonnyville for her dad’s work. She adjusted well to her new school, École des Beaux Lacs, a francophone school. The following three years were normal and she was a delightful well adjusted little girl. Her grade 6 year was amazing. She passed with straight A's. During the summer between grade 6 and 7, she suddenly started showing signs of OCD, severe tics, separation anxiety, poor sleeping, slurred speech, and trouble walking.
Within weeks, her health deteriorated very quickly. She developed many more telltale signs that things weren’t normal. At times her OCD, tics and behavioural abnormalities worsened to the point where it was impossible for her to attend school. She complained of blacking out and not being able to understand and follow the teacher’s instructions . She became more reclusive and didn’t want to go to school. During the next few years, with lots of coaxing, she attended school sporadically and continued with her extra curricular activities such as Ukrainian dancing and violin lessons only when she was well. During these years we saw our family doctor many times who was just as baffled as we were with her condition.
We were continually researching on the internet for answers. We came across the illness called PANDAS, an acronym for Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infection. It made sense as she had all the symptoms and a very rapid onset. Around that same time, we were referred to Mental Health Services here in Bonnyville. They arranged video conferencing sessions with a psychiatrist. We went a few times but we knew she needed more serious intervention. Eventually, we were accepted at the Glenrose Hospital in Edmonton where she saw an excellent psychiatrist Dr Carrol who, with all Sofia's prior history, suspected this was an autoimmune in nature. At that time PANDAS was not well known and many doctors didn’t believe it really existed. Because the symptoms appeared to be psychological, she was prescribed SSRIs, antipsychotics, and much more. Later, they added antibiotics and we were advised to go gluten free. This seemed to help but she was never really well. Every time that she got sick or her immune system was triggered, all her neurological symptoms would come roaring back.
Soon after, we were referred to a paediatrician, Dr McGonigle at the Stollery Children’s Hospital who worked closely with Dr Carrol (now retired). After his retirement, Dr Hodlevskyy took over. It was under their care that Sofia received many IVIGs that kept the illness at bay for a while.
As the years went by, she has had many relapses. We did our best to help her get through her worst moments which were many. She went to school intermittently and we tried to catch her up with her studies at home. This year, her graduating year, she has not been able to attend school at all. She has spent the best years of her youth suffering and struggling with this very debilitating condition! If you want to know what these children and their families go through, read “A Father’s Thoughts” on the PANDAS Network. Here is the link.
http://pandasnetwork.org/2018/07/a-fathers-thoughts/
Besides having a paediatrician and a psychiatrist, she has now an immunologist and a neurologist on board treating her. These last few months, her health has deteriorated so badly that it became life threatening. In January she was hospitalized at the Stollery Children’s hospital where she was treated with five plasmapheresis infusions. At first, it seemed to work. We were so happy to have her back as a normal, intelligent 17 year old. However, a little over a couple of weeks later, she relapsed. Now we have no choice but to resort asking for a treatment called Rituximab. This medication is mainly used for rheumatoid arthritis, and cancer of the B-cells. In the United States, they also use it for many autoimmune disorders including PANDAS and PANS. However, here in Canada, Alberta Health does not allow it to be given for this illness. We think it has to do with the cost. Recently, she had been hospitalized in a psychiatric ward where she continued to suffer and take up a very costly bed in order to keep her safe while we wait for approval.
In the meantime, all we can do is pray that it won’t be long before she can receive this treatment. Otherwise, we will have no choice but to pursue paying out of pocket for this expensive medication. I have not been able to work for the many years as I am her primary care giver and this is such a demanding condition . The cost of going to Edmonton at least twice a month for Doctors appointments has also stretched the pocketbook to a breaking point. We ask for your understanding and your generosity. All we want is to have our daughter healthy again.
Organizer
Christiane Hajdasz
Organizer
Bonnyville, AB
