By Dawn Stilwell
It’s 8:30 in the evening and time to put your 8-year-old child to bed. Off he goes, tired but happy, as he does most nights. It’s a normal day and all is well. Imagine now that the very next morning, the happy child that you put to bed last night has drastically changed. He is agitated, anxious and is suddenly quite obsessed with the cleanliness of his hands, washing them many times throughout the day. You remind him that his hands are already clean, but he can’t seem to curb his need to wash them. You try reason with him about it, but he gets visibly and almost violently frustrated, seeming like he physically cannot force the words he wants to speak from his mouth. He then cries, making an unintelligible moan while his hands are now in tight, white knuckled fists of anger.
You, as a parent, are puzzled and worried, watching your child exhibit these strange behaviours. You desperately want to chalk it up to a bad day, but something is niggling at you inside that this is much more serious than just a bad day. Then, this bad day stretches into a few more days, then a few weeks and by now, you’ve twice visited your doctor who claims it’s really nothing to worry about and that your child will grow out of it. So, you helplessly stand by and observe your child’s growing distress, trying to be supportive and reassuring while you struggle to find answers as to why your child suddenly went from ‘normal’ to appearing to be suffering with OCD, separation anxiety, difficulties with eating and angry meltdowns that break your heart. You comb the internet while seeking some sort of peer or professional support or possibly specialist referrals, anything really, that might give real answers and propose a treatment to help your child.
Welcome to life with PANDAS/PANS, a little-known syndrome affecting 1-2% of children under 18. PANDAS is the acronym for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections. How does a child end up with PANDAS? Here’s a quick breakdown of what happens.
A child contracts a streptococcal infection (for example, Strep throat). His or her body creates antibodies to fight the infection. However, in some children, these antibodies mistakenly attack the child’s brain, which results in inflammation of the brain, namely in the basal ganglia section. This inflammation then brings on symptoms such as OCD, anxiety, Tourette’s syndrome and at times, disturbing thoughts of harming themselves or others. The list of possible signs and symptoms is long. The child often feels their body or thoughts are out of their control, which is highly distressing to them. This causes the child further trauma, and coupled with the difficulties encountered in obtaining a proper diagnosis, the family remains in crisis.
Due to the psychiatric symptoms displayed in children with PANDAS, they are often misdiagnosed as having a mental illness, and treatment begins for that mental illness. However, the root cause of the psychiatric symptoms of PANDAS is not the same as those in the mental illnesses they are mistakenly being treated for. These treatments, at best, are ineffective and sometimes, even harmful.
Kerry Henrikson is a mother who experienced this ordeal with several of her own children. She knew there was something very wrong, but found it difficult to find competent medical help or support for her children and her family. It took a long time for Kerry to find a doctor with knowledge of PANDAS who was willing to take on the care and treatment of her children. There is a certain irony in the fact that getting a proper diagnosis of PANDAS is difficult, although once diagnosed, the treatment for PANDAS is easy to implement and is widely available. It has become Kerry’s mission to create more awareness of PANDAS/PANS and to offer support to parents who are struggling with children in crisis and are having trouble navigating the medical system to find a doctor who can help. She is the founder of PANDAS/PANS Ontario, a non-profit organization that seeks to educate about PANDAS and to offer resources and supports for affected families. Her story, along with others, are highlighted in the award winning documentary, Stolen Childhood. Watch it HERE.
As acknowledged in the video, many in the medical community are unfamiliar with PANDAS, and worse yet for families desperately seeking help, there are doctors who claim that PANDAS isn’t real. There are families that have spent thousands out of pocket seeking help and treatment in the USA, where PANDAS care is more easily accessible. The fact that the statistics say 1-2% of children are affected by this disorder, but many doctors do not know about it, means that there are potentially dozens of children in our communities that are being misdiagnosed and thus, continue to suffer. Which also means there are likely dozens of families currently in crisis due to PANDAS.
Parents want what’s best for their children, so they will try to research and gain understanding as to what may be affecting their children when their own doctor doesn’t have the answers they are seeking. When they find information about PANDAS, the answer they’ve been searching for, but the medical community pooh-poohs their concerns, it is most disheartening. When their children don’t get better or their symptoms worsen, people outside the nuclear family tend to notice. And for one family, the people who noticed decided to involve children’s protective services. This not only added insult to injury, it created a mental health nightmare for the parents who were just trying to do their best to find help for their child and now found themselves being targeted as some sort of abusers. The added stress of these allegations took its toll; one of the parents broke under the pressure and died by suicide. A tragedy that may have been avoided with a proper diagnosis, treatment and with support for the family.
There is hope here in Ontario, as PANDAS awareness increases and more doctors choose to be informed and committed to helping families affected by PANDAS. However, more needs to be done so that families and children can access timely diagnoses and treatment. There needs to be more doctors willing to specialize in PANDAS care. There needs to be more research. There needs to be better supports for parents dealing with children with this autoimmune disorder.
PANDAS is very treatable and parents who find competent medical help for their children say that the change after treatment begins is like night and day. A few days or even a few hours into treatment, and their children return to their former selves without the encumbrances of the psychiatric disturbances brought on by PANDAS. Parents are amazed and relieved at the incredible turnaround. Many children go on to make a full recovery. For others, their recovery may be longer due to damage caused by the delay in proper treatment, but still show vast improvement.
Now that you know about PANDAS, we at No One Stands Alone ask that you help spread the word. Every doctor, parent, teacher, educational assistant, and child worker should know about PANDAS. Please visit the following resources to learn more about PANDAS. Kerry Henrikson is also available to speak to your group about PANDAS. You can contact her via the pandaspansontario.org website.
Physician support—The Pandas Physician’s Network: pandasppn.org
Parent/school resources—The Pandas Network: pandasnetwork.org
Parent/School/Medical resources as well as downloadable/printable resources —Aspire Network: aspire.care
Stolen Childhood on Facebook: www.facebook.com/StolenChildhood2018
Many thanks to Kerry Henrikson and Erin Kwarciak for their great help in writing this article, by sharing facts, resources and stories about PANDAS with me.