How Jacob's Mom Found Help for His PANDAS

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Editor: Families dealing with PANDAS and PANS face an uphill struggle to find effective treatments for their children. As challenging as it can be, the situation is much better than when recognition of the condition was just emerging. Latitudes.org started a Forum for PANDAS in 2007; it was the leading source of information and support for families for many years (the Forum now includes PANS and Lyme). With more than 17,000 posts, this Forum remains a rich source of information.

A mother—I’ll call her Nora—was desperate for help and joined the Forum in 2009. As a young boy, her son had developed tics, extreme tantrums, anxiety, and obsessive-compulsive behavior. He lost the ability to comprehend what he was reading, meltdowns occurred almost daily, and he had constant GI pain. For years, numerous treatments, including repeat psychiatric hospitalizations, were not helping. Nora reached out to the Forum to find answers and direction. Here efforts resulted in a diagnosis of PANDAS and appropriate therapies. She posted this note of gratitude, below, and it is shared with her permission to encourage others. Nora also provided a realistic update. We wish Jabob and Nora the very best.

Nora’s post in November 2012:

Tomorrow is my son’s 17th birthday, and I’m feeling emotional, and more than anything, a profound sense of gratitude. Jacob will be celebrating tomorrow as a very different person than when I first posted to this group three years ago. Though I rarely post anymore, and I’m not sure how many reading now remember me, I often think back to that lonely night in a Maryland hotel room three years ago when yet a second PANDAS expert told me, “This doesn’t look like classic PANDAS.”

I turned my computer on, completely devastated and defeated, to say goodbye to this Forum group, and was met with warriors urging me not to give up, trust my gut, keep seeking help. Pretty soon, I had strangers on the phone offering their support; a doctor offered to look at my son’s case free of charge.

The people here redefined compassion for me. You are what kept me moving, what kept me sane. Without you, we would not have had a PANS diagnosis. We would not have followed through with a PET scan that eventually showed inflammation in the brain. We would not have found MycoP, had appropriate antibiotic treatment or gotten IVIG. We would not have made it through the relapse that came after the IVIG. If your voices had not pushed me forward, Jacob would likely be homebound or lingering in a residential treatment center.

Instead, at age 17, he is a junior in high school who went from thinking he’d end up homeless on the street to actually believing he would graduate and go to college. He read a novel and understood it. He’s getting all A’s and B’s right now. He’s driving, bought his own car, and has a part-time job. Jacob is hardworking and sincere. He has a good head on his shoulders for a teenager. He’s made a few friends. He went to his first high school dance. He asked a girl out (she said no–but still. . . ) He’s off all but one psych med (he was on three). He’s off antibiotics, and he’s out of therapy. He hasn’t had a terror/rage attack in over two years. There are no more holes in the wall and no more broken glass. He no longer suffers the embarrassment of enuresis. He’s not feeling paralyzed because he doesn’t know “what’s happening?” with the day.

Jacob’s physical tics are gone, and his verbal ones are few and far between–more like the occasional funny nonsense blurt out that everyone just laughs at. His little brother is writing an essay this week in school on how his brother is his hero.

It’s not perfect by any means. This is not an “Oh — he’s 100% completely symptom-free” story. He still takes an SSRI (antidepressant) and loads of supplements. He gets headaches, and he naps after school. He still has an IEP with accommodations. He still struggles with some OCD rituals, anxiety, depression, low self-esteem, and on rare occasions, a panic attack. These symptoms still get worse when he is sick (though his illnesses seem much less severe these days), and I still catch myself (as does he) panicking when the sickness happens.

And on top of that, he can just be a pissy teenager at times. But after years of being “gone,” he is starting to find himself and think about who he is beyond PANDAS. It’s an amazing thing to witness and reflect on.

So, I offer my immense gratitude to all of you who were there for us and all of you who are still here for each other. You will be in my mind as we celebrate tomorrow because without you, we wouldn’t be celebrating the same things.

Keep fighting for your kids. No matter what it costs, no matter who tells you that you should stop, no matter how long it takes, or where it leads you. You may feel alone, or like you don’t know what you are doing, but you do. You know your kiddo is sick, and you know you will get them well. It will happen.

An update from Nora, November 2021

Nine years have passed since I wrote this. Tomorrow is Jacob’s 26th birthday, and so much has happened since then.

He did graduate high school but was consumed with intrusive thoughts of suicide. He did go on to college, but while chasing down the source of his headaches, he learned at the age of 19 that he had a benign brain tumor near his brain stem. He underwent gamma knife radiation surgery, which further aggravated his PANS symptoms.

But Jacob persevered and graduated with a Bachelor’s degree so he could show other PANS kids they can too. And he got a professional full-time job that he had to leave because he had a PANS flare that he couldn’t fight off fast enough; his brain suddenly wouldn’t process the technical information he needed to do his job. But then he recovered and found a job that suited him better and he moved into his own apartment in a new city, and started a relationship.

It’s not perfect, and Jacob believes he will always struggle to some degree because the initial treatment took so long to find. He knows he lost several years of his childhood. But he has a sense of grace and compassion for others that only comes from knowing struggles. Life is full of ups and downs, but one thing that will never change is the gratitude for those that lifted us up during the darkness. Be well.

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A stock photo was used and the mother’s name is withheld.