I am not a doctor. I just need the ones who listen.

I am not a doctor. I just need the ones who listen.
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I am not a doctor, nor do I purport to offer any medical advice whatsoever.

But as a mother and an advocate for Pandas/Pans Advocacy & Support, this post grew from a place of epic concern.

Had you told me my 100th blog post would…

1) discuss a House Bill up for review in the 100th Illinois General Assembly, to require insurance coverage for PANS/PANDAS by recognizing it as a coverable illness.
2) involve a medical condition most pediatricians don’t believe in,
3) attempt to offer hope to families who find themselves in the midst of unimaginable crisis,
4) mention one family in particular whose son ended his life on Christmas Eve before receiving the medical treatment he needed,
5) shine a glaring light on the fact insurance companies use the very studies which support treatment modalities against families seeking coverage for those treatments, or
6) get written between between 2:00 a.m. and 4:00 a.m. — the prime hour for parents forced into becoming their kids’ medical case managers, struggling to understand research and connect with others living this nightmare (which might account for the typos and rambling herein)…

…well, I’d have laughed and said, “I’m in no way qualified to write about any of those things.”

And yet here I am.
And here it goes.

1) What is HB2721 and why does it matter?
Representative Robyn Gabel (D, 18th District, (217) 782-8052) co-chairs this bill, which is slated for tomorrow’s 100th Illinois General Assembly in Springfield. Progress was made last year to establish an Advisory Council on the matter, and while politics moves almost as slowly as medicine, the push continues for families struggling with a rarely recognized, devastating set of illnesses called PANS (Pediatric Acute Neuropsychiatric Syndrome) and its subset, PANDAS (Pediatric Acute Onset Neuropsychiatric Disorder Associated with Strep). Think of PANS as cancer, and PANDAS as leukemia.

HB2721 “Amends the Illinois Insurance Code, the State Employees Group Insurance Act of 1971, the Counties Code, the Illinois Municipal Code, the School Code, the Health Maintenance Organization Act, the Limited Health Service Organization Act, and the Voluntary Health Services Plans Act. Provides that a group or individual policy of accident and health insurance or managed care plan amended, delivered, issued, or renewed after the effective date of the amendatory Act shall provide coverage for treatment of pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections and pediatric acute-onset neuropsychiatric syndrome, including, but not limited to, the use of intravenous immunoglobulin therapy. Effective immediately.

HB2721 matters because right now, insurers don’t accept there’s a standard of care for PANS/PANDAS. And without an accepted standard of care, insurers can deny coverage. This ties the hands of our physcians, who cannot prescribe necessary medical care to patients knowing treatment is not recognized as a standard of care. Ultimately, it’s the children who suffer.

2) PANS/PANDAS — get used to hearing about these conditions
Close to home, during the 99th Illinois General Assembly, a bill became law to form an Advisory Council on PANS and PANDAS. Nationally, advocacy groups like Pandas/Pans Advocacy & Support, Pandas Network, Pandas Physicians Network and others gain momentum every day raising awareness and funds to support families in crisis. And a documentary by Tim Sorel, MY KID IS NOT CRAZY: A Search For Hope In The Face Of Misdiagnosis, highlights the complicated and overwhelming experience of several families. In my opinion, MY KID IS NOT CRAZY is the cinematic, pediatric equivalent of Brain On Fire meets Infectious Madness; it’s a film that will change the way we look at mental illness forever.

3) Hope won’t fade
As exhausted as families become by the presence of these overwhelming conditions, awareness continues to grow and hope is within reach. More and more doctors, schools and communities acknowledge PANS and PANDAS and their often complex presentations. Advocates continue to educate and support families trying to navigate the medical, social, financial and emotional drains these conditions demand. Legislators are taking notice. And insurance industry insiders admit they want to learn more and need to recognize these conditions.

4) The Wallace family honors their 13-year-old son Max’s life this Thursday, March 9th, in Benton, Arkansas, with a special screening of the documentary MY KID IS NOT CRAZY: A SEARCH FOR HOPE IN THE FACE OF MISDIAGNOSIS.

Here’s a local news story on Max, a life cut short due to PANS/PANDAS.

On February 24, 2017, as a result of the Wallace family’s outreach on behalf of Max, one parent described her family’s experience:

“Feeling helpless, and not knowing which way to turn anymore. That’s exactly how it feels day in and day out trying to get your kid back to some kind of normalcy. PANS/PANDAS is pure hell! The daily battle these kids face can’t even be comprehended by most. IT. DOESN’T. SEEM. REAL…To physically sit beside your child…look in to his eyes and see nothing but despair, fear, anger, confusion, hopelessness…it will tear your heart apart piece by piece. The look in his eyes begging you for help, the agony his mind fights daily is soul crushing!! WHY isn’t there more known about this disease, WHY do parents have to spend every last dime they have to get “unrecognized” treatments done to save their children’s lives?!?? WHY is it a fight every damn day to find some sort of normalcy in the midst of this disease?!?? It just doesn’t seem real…that’s all I got to say. IT. JUST. DOESN’T. SEEM. REAL…I urge you all…educate yourself about PANS/PANDAS…you never know when this disease can strike…you could save someone from a lifetime of misdiagnosis and the all too many medications given that could ultimately make it worse…”

5) So why do insurance companies deny coverage?
Good question. But insurers can pick and choose what sources they use use to deny coverage. Some even use sentences within the very sources which might otherwise provide research data and actually support treatment.

There are two studies supporting the use of IVIg (intravenous immunoglobulin therapy) for PANS/PANDAS, yet parts of both are cited by insurance companies like Blue Cross Blue Shield in denial of coverage. The 1999 Lancet provides a seminal study supporting the use of IVIg to treat the condition (“Pandas and Immunomodulatory Therapy”), as does the 2007 “Guidelines on the use of IVIg for neurological conditions” (Feasby).

However, it’s almost like insurers are purposely misinterpreting the data, using parts of these studies to deny coverage of IVIg.

Insurance companies are taking notice and educating themselves. More and more often I see representatives from the industry reaching out to advocacy groups, asking for research, taking notes about personal stories…and even sharing their own experiences dealing with these conditions.

And is it not the moral and ethical obligation of insurers to provide coverage for modalities known to help patients? Or is someone making decisions based on money, rather than the health of children?

6) Trying to make sense of it all
Politics and economics aside, it’s critical to know 3 things about the treatment for PANS/PANDAS:

  1. Treat the source of the infection (antibiotics, antifungals, etc).
  2. Treat the symptoms of the infection (Cognitive Behavioral Therapy (CBT), Dialectical Behavioral Therapy (DBT), Exposure Response Prevention (ERP), and other modalities like pharmaceuticals at a low, slow rate as needed).
  3. Treat the system using recommended immunomodulatory modalities such as steroids, IVIg (intravenous immunoglobulin therapies, which are used and approved for numerous immune deficiencies), plasmapheresis, etc.

I’ll say it here, there, and everywhere:

•I am not a doctor.
•I am do not purport to offer medical advice.
•I am a parent who was asked, by a doctor, to investigate and explore this disorder; although he suspected a patient might have it, he was not familiar enough to recommend treatment nor offer a path or process to learn about the issue. Like many people, I was sent out to find answers without the qualifications to do so.
•I stepped into a hornet’s nest of controversy, political battle, medical indecision, and overwhelming amounts of data to sift through.
•These issues are best left to qualified experts to debate and determine best practices.
•In the meantime, I hope to inspire dialogue among those in — or just coming to — the conversation.

I’ve communicated with hundreds, if not thousands of families, who are trying to navigate this nightmare. They’re tapped out emotionally, financially, physically.
They deserve support, compassion and open-minded thinking.

If I had a dollar for every clinician I’ve met — from local practitioners to researchers at the National Institutes of Health, who’ve said, “I couldn’t fathom how in infection could trigger psychiatric issues…but after reading the literature and opening my views, I’ve seen the evidence. I finally get it.”

And we need more people to get it.

We need to admit that, until now, we’ve missed something huge, and that it’s time to address it.

These kids, these families, deserve nothing less.

Thank you to all the open-minded doctors, legislators and families for not giving up. You’re saving lives. You’re changing the world.

I am not a doctor.
I just need the ones who listen.

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    Christine Wolf

    I tend to cover life's ups and downs. I don't shy away from the tougher, more emotional stories. While I'm always willing to voice an opinion, it sometimes contradicts my innate desire to please everyone at all times. Such is this crazy life, I suppose. Ultimately, I search for meaning in the human experience, and openly share how I (try to) keep my head above water. Thanks so much for dropping by. I really appreciate hearing your thoughts.

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