This is a discussion following the tragic loss of life in December 2016 of Max Aaron Wallace (age 13) -- a child diagnosed with PANDAS.
Parents and children with PANDAS-PANS struggle for understanding by the medical, psychiatric and research communities. The result of this is tragic for our children. In 2017 PANDAS Network (PN) is working towards announcing several ways that will allow multi-disciplinary discussions on this illness including a conference in the Fall of 2017, patient registry plans and a new community partnership initiative. Also, the consortium will publish
three treatment papers
in the JCAP published in February. Lastly thankfully, Mr. Tim Sorel’s, “
My Kid Is Not Crazy
” film will make a lasting impact that will continue for years to come.
This letter, however, is to speak candidly about OCD and it's darker side that, frankly, has not been tackled by PN or our conferences.
The impact of PANDAS/PANS which hit our family in 2007 has changed me forever. I have hesitated for a decade to write about the deeper truths of this illness on both of my children’s lives—particularly my son who had sudden onset at age 7. I am speaking up today, like many of you already have, because of the death of Max Aaron Wallace (age 13)
. Many of you have read about his story on Facebook and it has been traumatic for all of us. I am grateful the family had the courage to tell our community about their loss. Below I have listed a very good article on OCD and Self-Injury that all parents should read.
This is a serious discussion, about OCD and self-annihilation thoughts, that I feel the consortium AND our families need to grapple with and explain more clearly to the public at large. Because of delayed treatment, it took five years for a full remission of my son’s symptoms many of which involved self-injurious threats -- though the worst of it was in the first two years. My daughter became sick several years after my son, and therefore, she had prompt treatment within two days—and had a full remission in only six weeks. My daughter’s story should be every child’s story.
First and foremost, the vast majority of children I have heard about or cases I have reviewed (over 3,000 cases now) have come through PANDAS now live productive lives as teens/young adults though treatments are different and length of illness varies. Our goal now as a “network of families” is to make sure they continue on into a healthy adulthood with a robust autoimmune system and mental health.
Because of the Wallace family, I REALIZE NOW it is extremely important to discuss the darkest side of some forms of OCD so we are better able to equip, yes, ourselves, BUT ALSO, the medical community so NO CHILD IS MISSED!
Some (but not all) children with PANDAS onset often have very acute OCD which often precipitates suicidal thoughts, words and scary life-threatening actions. I want to maintain my son’s privacy – but there were many times I had to restrain him from life-threatening moments or “Suicidal Ideation.” There were ways I restrained him I will never speak about publicly because I am ashamed. I have often thought that because he was so young at onset and I caught it so early -- we were lucky. Perhaps because we caught my daughter's onset so early she never had these dark thoughts.
Our family psychiatrist, Dr. Margo Thienemann (Stanford U PANS Clinic), assured us that suicidal ideation with severe OCD is not uncommon. This helped me put my 7 yr olds bizarre outbursts into perspective, of course, but it was strange and horrible world going from “normal childhood” to a young child with self-harm actions and words. She put simple CBT skills in his “tool box” to protect him from “the bad voice.” His father and I also learned certain ways of coping with his behaviors that frightened me terribly. But it was a struggle to maintain composure and I often failed.
Infection to the brain and its affects is abysmally slow to be recognized. The heinous nature of Strep A’s mimicry potential damage is barely understood by the general medical practitioner. It has been shocking to me how slow research takes hold. I NEVER imagined I would be at this for 10 years. Never. The “prejudice” against mental illness is very
very real. Doctors have told me, “Look…. PANDAS is unattractive, too complicated and too time-consuming.” The “too time consuming” is what I have actually read in Neurology textbooks.
GIVE ME A BREAK!!!!
So, even as the medical community figures out (I guess) what their “tolerance levels” for our children will be, as a community we must be brazenly honest about the
darker sides of PANDAS and embrace and support each other to come through to the other side of awareness.
I hope this begins a dialogue—I am grateful personally for all of you bravely engaging in social media. This a journey,
person can take alone. This is one small step. Change is coming I really believe that.
Interim Ex. Dir. PNetwork