Our Story

Consider these startling facts reported by the National Institute of Mental Health:

  • 1 in 200 children are diagnosed with PANS or PANDAS every year.
  • Children commonly suffer with symptoms for 3 years and see 8 to 10 doctors before they are properly diagnosed.
  • Although there are reports of onset in the first year of life, most children are diagnosed between the ages of 3 and 14.

My son, Aidan, was one of those 200 children in 2016.

Aidan was admitted to a children’s psychiatric hospital for 10 days in early 2016 because of uncontrollable body movements, rages and aggression that doctors could not reasonably explain or effectively treat. On Aidan’s worst night, he was psychotic for more than five hours. The next morning, he was covered with bruises from throwing himself against cinder block walls and kicking metal doors.

Aidan’s brain was under attack, and nobody knew. When we left the hospital, Aidan was on medication to seemingly temper the rages and tics. However, as the novelty of being home wore off, Aidan’s symptoms began to snowball once again.

My daughter and I ran in the first-ever PRAI 5k in Sept. 2017. Organized by PANS Research and Advocacy Initiative (PRAI), the event drew more than 500 runners and raised over $150k for PANS research.

During the next three weeks, Aidan’s rages escalated with avengance. We were prisoners in our own home; Aidan’s rages were unpredictable and lasted for hours. The end of one episode was welcomed by the beginning of the next. My two older children, then ages 11 (daughter) and 15 (son), looked at me with eyes full of fear and confusion. How could Aidan be so sick after 10 days in a hospital?

Despite adding an anti-psychotic prescription to our pill arsenal, Aidan continued to spiral downward. In hindsight, I should have known then that we were not dealing with a mental illness that could be treated by a mood stabilizer and anti-psychotic drug.

Fortunately, Aidan had a check-up appointment with the developmental pediatrician who diagnosed his autism years before, and during that appointment I told her about Aidan’s unexplained rages, aggression, uncontrollable body movements and tics. She watched him roll back and forth on a floor mat for the 25 minutes that we talked. I asked her, “Is this what autism can do to a child?”

She quickly replied, “No, this is not autism,” and asked, “Was Aidan sick four to six weeks before the rages and tics started?”

Yes. He had a cough that only went away with an antibiotic.

She diagnosed him with PANS and referred us to a local immunologist who recently started treating more children with PANS and PANDAS. She also quickly informed me that the treatments for this illness were not commonly covered by even the best insurance companies.

And now what?

Aidan after several low-dose IVIG infusions and one high-dose IVIG infusion. Combined the treatments gave us a much needed reprieve in August 2016.

The immunologist confirmed the PANS diagnosis and learned through blood work that Aidan’s cough six weeks prior to the onset of symptoms was triggered by a mycoplasma in his blood–the same bacteria that causes pneumonia. He also discovered that Aidan had a deficiency to strep antibodies. He used this information to obtain insurance approval for six monthly low-dose IVIG infusions, hoping that any IVIG would help Aidan’s PANS symptoms.

We noticed improvements in Aidan’s behaviors and disposition immediately after the first infusion. It was wonderful to see Aidan calm and smiling. He even told us that he felt so much better.

Unfortunately, the signs of healing only lasted for one month. We hoped that the second infusion would rekindle the progress, but it did not. We still continued with our immunologist’s IVIG infusion plan, but we also sought treatment from a physician’s assistant in Florida who is known for his success in helping children with autism and PANS. We saw improvements in Aidan’s behaviors with the treatments prescribed to heal his gut lining and blood-brain barrier. Aidan also experienced relief from the one high-dose IVIG infusion administered in conjunction with his low-dose IVIG infusions. Even still, the relief was short lived.

After months of flaring, we saw Aidan’s local immunologist again, and he recommended that Aidan receive plasmapheresis, a process through which Aidan’s blood was literally cleansed of the antibodies that had been attacking his brain for months.

Aidan’s first plasmapheresis treatment after the port was inserted into his aorta–the body’s most powerful blood source.

How is Aidan now?

I will let Aidan speak for himself.. “Mom, I am finally healthy!”

After months of sheer hell, too many holes in the walls to count, busted bathroom and kitchen cabinets, and a few broken electronic devices…we have a calm, rational and happy son.

A large part of me feels uncomfortable sharing Aidan’s healing, because I know that if you are visiting my blog that you are in the midst of PANDAS/PANS hell. You’re not sleeping because your researching. You’re not eating healthy because you’re stressed. You don’t remember if you showered this morning. And you sure as hell don’t know what you’re feeding your family for dinner.

I.get.it. 

I’ve been where you are. I understand the exhaustion, the anger, the desperation.

That is why I started this blog. A journalist by trade and mom my destination, I want to connect my experiences with PANS with my tendency to question and research so that I might possibly provide insights for other families affected by a child with PANDAS or PANS.

As hard as the present is for you and your family, please don’t lose hope. Keep researching for answers. Keep asking questions. Keep searching for healing. Keep telling your story. You never know what you might learn or who you might help.

My son’s PANS illness has changed my course in life, and that is why I can honestly say that you are not alone.

–MJ

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