Prime Parents Club

PANDAS and Autism Spectrum | Questioning Special Needs Diagnoses

Prime Parents Club Special Needs PANDAS Autism

 

Just because it walks like a duck, doesn’t make it one.

There is a lot of news lately about changing the Autism diagnostic protocol. When it comes down to it, a lot of it is open to interpretation by whomever is treating your child.

By age five, my youngest son had two instances of random catastrophic stuttering. Although odd, the doctor wasn’t concerned, thinking his mind was moving faster than his body could get the words out. In preschool, tics developed, drastic, overnight and very extreme. One became two, evolving, dropping off, another new one following right behind.

The first diagnosis came from a neurologist: Tourette’s Syndrome. Then came the determination of OCD. Next was Anxiety Disorder and eventually Asperger’s Syndrome.

At that point, medications not even approved for use in young children were prescribed. These “fixes” we’re destroying my son, making him almost unrecognizable. He had volatile reactions to SSRI’s (selective serotonin reuptake inhibitors) which caused meltdowns almost hourly until our entire household was in chaos.

Almost cyclic, I questioned his pediatrician and he refused to even see him because it “wasn’t his specialty.” His psychologist once took 21 days to return numerous frantic emergency phone calls. His neurologist believed I was in denial as far as the diagnosis and believed it was simply a “progression of his symptoms.”

It was like banging my head against a wall.

Then one day, 18 months ago, we caught the merest of blurbs on TV about a boy and the phrase “it all started when he refused to sleep in his bed.” This immediately drew my attention as Carter had not slept in his bed for over a year by this point. Watching it, my heart dropped. I had so many emotions take over my body that I could barely stand, let alone breathe–rage, sadness, and complete and utter disappointment in the years of doctors and diagnosis. And relief, because I knew that after two years of hell for my son, we now had an answer.

That answer was Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus, or PANDAS. In a nutshell, the same type of strep that causes rheumatic fever in the heart, causes this disorder in the basal ganglia of the brain. Symptoms replicate Tourette’s, OCD and Anxiety disorders. When exposed to strep, an exacerbation of these symptoms occur.

The rage happens when I realize this could have been tested with the strep labs. Instead, it went untreated and quite possibly caused permanent damage. These “specialists” would rather slap a lifelong label on him than to do a simple lab, ruling out PANDAS if nothing else. But because these things looked like autism spectrum disorders, and knowing they often went hand in hand, it was easier to assume they were therefore spectrum disorders.

Walks like a duck, talks like a duck, yet not a duck.

My son has since found a doctor that gave the PANDAS possibility merit. He placed my son on an $8 antibiotic, NOTHING else. Within four days, all signs of Tourette’s disappeared…after four years!  Within two weeks, OCD and anxieties were barely discernible.

We just recently had a one year follow-up with the neurologist that believed the progression theory.  He congratulated us, saying Carter seemed to be on a “course consistent with PANDAS.”  Recommendation? Antibiotics until he reaches age 22, similar to rheumatic fever treatment.

Does my son have Asperger’s? Without a doubt. Do spectrum disorders go hand in hand? Probably more often than not. However, trust your judgement. Question doctors. Demand answers. Advocate for your child.

If you’re lucky, maybe they will slowly find their way back to you.

My name is Lori Parrish. I am a 42 year old, soon-to-be single mom of three amazing and very diverse sons. I am navigating through a divorce after 20 yrs of marriage, and I am determined to come out a better and far stronger person because of it. Life for me involves running non-stop for sports schedules, dealing with medical issues for my special needs sons and maybe carving out a life for me as an individual as well as a mom.

2 Comments

  1. Crystal Paschal

    April 9, 2012 at 10:52 pm

    Although I have not had to deal with a child with special needs, the one thing I’ve learned as a parent is that YOU are your child’s advocate, and you have to be willing to ask questions and be persistent when it comes to these kinds of things. I am so sorry for what you went through, but I know that sharing this will be a blessing to many other moms.

  2. Prime Parents Club

    April 2, 2012 at 1:51 pm

    I was angry for you as I was reading through this, so I can’t even imagine how it was for you.

    /jackie

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