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Alexis Shares Her Experience with PANS/PANDAS

Alexis Shares Her Experience with PANS/PANDAS

My little Squishy was diagnosed with ASD May of 2017.  There were speech and communication delays as well as some social deficits.  He was an easy-going dude whose main frustrations stemmed from his lack of ability to communicate.  We started some dietary interventions, began a few supplements as well as Andy Cutler Chelation and seemed to be in our groove.  He was making progress and I was feeling confident we were headed down the right path.

First Signs of Trouble

Around Thanksgiving the same year, Squishy boy acquired a vocal stim (he’d make a “yeeeeeeee” sound).  In addition, this was often accompanied by some strange hand contortions and gritting his teeth together.  I just assumed this was the metals moving out of his body and continued on with supplementation and ACC. In addition, he seemed to have a constant cold the month of December, but that was not unusual for small kids in germy preschool.

By January 2018, Squishy developed severe separation anxiety and began chewing his nails nervously. He started waking up in the middle of the night, for hours at a time. He spent a lot of it jumping off the foot of his bed repeatedly.  In the evenings after school, he’d run around the house, seemingly in pain yelling “Oh no! Oh no!” and would bang his head on the floor. The language that he had seemed to diminish, except for “Oh no!”  

My mellow dude went into raging tantrums at the tip of a hat.  He’d throw himself on the ground and writhe around while screaming. Each tantrum episode would last over 10 minutes and it was very challenging to calm him down.  

In addition, he started having massive stools…bigger than anything I’ve ever seen from a child. I’d have to double or triple diaper before bed because he’d have massive BMs in the middle of the night that destroyed his jammies if I didn’t.

My mom brought to my attention how large Squishy’s pupils seemed. They seemed to be extremely huge, regardless of the lighting of his environment.  

Could it be PANS/PANDAS?

The more I researched, the more I realized that all of the symptoms that Squishy had pointed at PANS/PANDAS.  I’d heard of PANS/PANDAS before, but brushed it off because Squishy didn’t have classic tics or OCD.  In my mind, the tics needed to look like the facial tics associated with Tourette’s and OCD had to look like habitual hand washing or something similar. It wasn’t that he didn’t have the tics and OCD behaviors. I just wasn’t clear on what I should be looking for at the time.

We took a trip to our pediatrician and I asked for a rapid strep test and peri-anal culture for Squishy. The nurses reminded me that he didn’t have a fever or any other strep symptoms, so a rapid test was unlikely to give us any info.  They couldn’t have been more wrong. The nurse stopped in the room to deliver the news – the rapid strep test was positive and they’d be writing a prescription for an antibiotic.

I assumed the tics needed to look like the facial tics associated with Tourette’s. I thought OCD had to look like habitual hand washing or something similar. It wasn’t that he didn’t have the tics and OCD behaviors. I just wasn’t clear on what I should be looking for at the time.

 

Progress and Persistence

After the 10 days on the antibiotic, Squishy made exponential progress. However, he didn’t seem to be back to himself quite yet. I called our local Children’s Hospital to make an appointment with the provider known in our city for treating PANDAS. They said they could get us in in about a year, but asked if I wanted to go on a cancellation list.  I was absolutely shocked and enraged that they expected desperate parents with sick children to wait a year to be seen.

Instead, we made an appointment with a MAPS doctor. I asked for him to do another round of antibiotics to try to get my kiddo back to baseline and he agreed.  

Despite this initial progress, my mother’s intuition was telling me something else was up. I asked the doc to run a viral panel and that’s when we found HHV6 and mycoplasma. His HHV6 antibodies  were sky high which meant he was fighting an active virus.

Who knows how long Squishy had been fighting this virus, but combined with the strep that was lurking untreated, he didn’t have a chance.  The combination of the two caused inflammation in his body and all of the symptoms were red flags that something dire was going on.

Ongoing Treatment, Feeling Better

We never obtained a clinical diagnosis for PANS/PANDAS.  I felt that due to the lack of protocol in the standard of care for PANS/PANDAS, the label didn’t matter to me. 

I knew his symptoms and behaviors mirrored PANS/PANDAS, so in my mind, I could pin the recent changes we saw in him on this disorder. The medical providers on our team agreed.  

We’ve been working with Squishy’s doctor to treat the HHV6 for almost 10 months.  Through the use of a prescription antiviral, his HHV6 antibodies are finally within the normal range.  His pupils have returned to normal size and his language is returning. His sleep is back to normal. He’s making great progress at preschool and excelling in ABA therapy. I’m confident that our current treatment plan is working and we’re headed in the right direction.  

 

Sharing My Knowledge With You

Here are a few things I’ve learned along the way that might help other parents navigate the world of PANS/PANDAS.  

1) Recognize symptoms

The list of symptoms for PANS/PANDAS is large and quite diverse.  Even if your child only has a few of the symptoms listed, or if you’re not sure if a new behavior or symptom qualifies,  it still might be worth investigating.

Click here to see the PANS and PANDAS symptoms.

 

2) Find A Provider Who Can Help

Unfortunately, there are few medical providers out there who are well-versed in the diagnosis and treatment of PANS/PANDAS.  A MAPS doctor may be a reasonable person to approach, as many have at least heard of the condition and may have some training on treatment options. To find a MAPS provider, search your area here.

Click here for a list of providers listed by the PANDAS Network.

An immunologist may also be a resource to consider.  Since PANS/PANDAS is considered an autoimmune or autoinflammatory disease, immunologists may be able to offer some testing options and treatment guidance.  Make sure to ask of the provider treats PANS/PANDAS before booking your appointment.

Some parents found a pediatric neurologist to be helpful.  

3) Consider Getting A Clinical Diagnosis

Getting a PANS/PANDAS diagnosis can be a challenging process.  It’s a clinical diagnosis which means that the provider may do some blood tests in conjunction with reviewing the child’s medical history and symptoms to determine if a PANS/PANDAS diagnosis would apply.  Some of the tests you may be asked to do include a viral panel, strep antibodies, or the Cunningham Panel. To see a more detailed list of tests, click here.

PANS Diagnostic Guidelines

PANDAS is typically associated with strep. Click here to see the PANDAS Diagnostic Guidelines

Please note that even if a child receives a diagnosis of PANS/ PANDAS, it doesn’t mean that treatment will be easier or more accessible. The number of medical professionals who are still on the fence as to PANS/PANDAS being a legitimate condition is large and this can hinder treatment. This is when being a strong, educated advocate becomes most critical.

 

4) Learn About Treatment Options

Currently, there isn’t a current standard of care for PANS/PANDAS kids. Some kids may be treated with daily anti-inflammatories like ibuprofen or steroids, and others may receive long-term antibiotics. Some kids improve with simple supplements.  A portion of kids may even be candidates for intravenous immunoglobulin (IVIG) treatments or plasmapheresis.

Many parents also treat their children with homeopathy. The treatment plan for each child will vary based on their symptoms, root cause and the knowledge of the medical professional you work with.   To learn more about potential treatment options, click here.

5) Be Prepared For “Flares”

Squishy has had his share of “flares” since we began treating the strep and virus about a year ago.  I can tell when he’s flaring because he’s extremely stimmy, his language drops off and his pupils seem large again. Because his current doctor does blood testing every 6-8 weeks to check viral antibodies, I’ve been able to see a trend with his behavior and the HHV6 antibody levels.  

For other kids who aren’t getting frequent blood work and are known to be affected by strep, parents have purchased home strep kits off of Amazon to do testing without leaving the house. By testing for strep, it’s easier to make a correlation between a suspected flare and a trigger.

Other kids may be sent into flares for a variety of other reasons that include fighting a common cold or simple virus, seasonal allergies or even loose teeth.  A trip to the dentist might stir bacteria that can prompt a flare.

Flares can last from just a few days to months. How each child reacts to a flare will vary, as will treatment options.  Parents must lean on their team of medical providers to support the child during treatment, and especially through flares.   

 

This isn’t an easy road to navigate.  However, when you’re armed with information you’ll be surprised how much easier this journey can become.

Yours in the fight,

Alexis

P.S. Want to hear me discuss my journey with PANS/PANDAS with Lily? Check out the accompanying podcast episode here.

ADDITIONAL RESOURCES

My Kid Is Not Crazy on Amazon Prime Video

20/20 PANDAS Episode

PANDAS and PANS: Clinical, Neuropsychological, and Biological Characterization of a Monocentric Series of Patients and Proposal for a Diagnostic Protocol.

Neuropsychiatric symptoms following sore throat in a young boy.

[PANDAS and PANS in children and adolescents are still controversial diagnoses].

Neuropsychiatric Disorder Associated with Group G Streptococcus Infection

An Atypical Presentation of Pediatric Acute Neuropsychiatric Syndrome Responding to Plasmapheresis Treatment.

Treatment of PANDAS and PANS: a systematic review.

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