**Note: This blog was submitted to me by a member of TPWL community. She asked that I share her story in hopes that others who are struggling with this issue know that they are not alone and hopefully find the answers they are looking for. ~Angelia
Isaac was 8 years old the first time that he held a knife to his chest. Eight! It would take six long years, twelve doctors, and 11 misdiagnoses before we finally understood why. This is Isaac’s story.
Isaac first got sick in October of 2016.
Isaac was 8 years old the first time that he held a knife to his chest. Eight! He was impulsive and did not want to live. We talked him down, and by the time we got to the ER he was normal again with only a vague recognition of what just happened.
Trying to convey to a host of medical providers that my normal-looking kid was just in a rage of emotions and wanting to die was near impossible. They sent us home, and we had another psych follow-up scheduled.
No one listened when we would tell them how he changed – how terrible and scary his behaviour would get – and then he’d normalize again. Until last October.
Isaac was in a new low and complained of a headache. I gave him ibuprofen. And then I watched my raging, anxious, defiant, suicidal child calm right in front of my eyes within 20 mins. He had very little recognition of the events that had just transpired.
This response from the anti-inflammatory medication was instrumental in helping us find the right diagnosis and start a very long journey toward healing.
My Momma brain went into overdrive, and I started researching. I stumbled upon the PANDAS network and started sobbing. These people were describing my child in vivid detail. Suddenly my son’s symptoms had a name. I just needed to find a doctor to listen to me.
PANS – Pediatric Acute-onset Neuropsychiatric Syndrome is an autoimmune response where the body attacks itself in response to a trigger. This trigger is usually viral or bacterial in nature. The part of the body that is impacted is the brain – specifically the basal ganglia.
The illness manifests as psychiatric in nature – often causing debilitating symptoms including OCD, anxiety, depression, ADHD, paranoia, insomnia, disordered eating, suicidal ideation, rage, impulsivity, demand avoidance and panic attacks, to name a few. They are often abrupt changes and many families can tell you when the change happened.
It is hard as a PANS/PANDAS parent to find help because you feel completely and utterly helpless to convey the changes…especially when they are not fully present all the time. They come and go in waves. We now recognize that these waves were a post-infectious response. Each time the behaviors cycled through they became more severe.
It is common knowledge among the PANS community that there are many hiccups in finding care. There is a lot of controversy around the diagnosis, itself. There is a complete lack of awareness and understanding in the medical community. There are a lack of treatment standards and mandates across the nation. Many families pay out of pocket and travel out of state to find help.
PANS is estimated to impact 1 in 200. That’s a lot of families desperately begging for help and understanding, and it needs to change.
If you are a family struggling with similar symptoms, please reach out. I will do everything in my power to help you find a resource and to help you find answers. I know what it feels like to be lost, scared, and desperate for a solution. I know what it’s like to hold my child while he begs me to kill him so that he doesn’t have to live like this anymore. I know. I don’t want others to suffer the way we did.
If you are not struggling with this issue but would like to help, please share this post with others and consider donating plasma. PANS kids depend on plasma to get well. Please… Do it for Isaac!
If you are a medical provider please visit www.neuroimmune.org and consider attending the Inflammatory Brain Disorders Conference. The suffering needs to end, and you could be the answer so many families are searching for. I beg you.
In hopes of spreading awareness and paving the way for others, Isaac wanted to share his story on Oct 9th for PANS/PANDAS awareness day. Maybe another family is struggling and desperate for answers, or maybe his story will reach another medical provider that is willing to educate themselves and learn how to recognize and treat this debilitating illness.
In his own words, “It shouldn’t be this hard Mom. We shouldn’t have to beg for help.”
Sarah & Isaac (a fellow Pilot Wife and her son)