My "easy" explanation for my son's diagnosis
My lead BCBA at the Children's IOP has been critical in finding and accessing journal articles, case studies, and documented research regarding PANDAS. She ran into the psychologist who had first given Hunter his PDD-NOS diagnosis and she informed her of the PANDAS diagnosis. The psychologist had given her the look...and our therapist quickly said, "No, it's real." When we first started the program in January, I received the same response I do every time I report to someone that Hunter has PANDAS. The questioning glance, the not-so-sure-that-really-exists face...I'm kind of used to it, but it never stops me from giving the explanation that is rote now. Here's my blurb:
"What does he have? PANDAS??"
Me: "Yes, he has PANDAS- Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep. He was typically developing until he contracted a strep virus at 17 months that attacked his basal ganglia, crossing the blood brain barrier and activating an autoimmune response. Sensory issues and OCD issues started to develop post-infection, and a repeat infection this February unfortunately confirmed this diagnosis with a severe regression."
"Isn't that a controversial diagnosis?"
Me: "Yes- but the big controversy isn't if it exists- it has been proven over and over again. It is controversial in the name that you give it. Some call is PANS (Pediatric Acute Neuropsychiatric Syndrome) or PITAND (Pediatric Infection-Triggered Autoimmune Neuropsychiatric Disorder); however, with our son, we know that strep is the trigger. He contracted the flu in January, and although he did have slight regression (common with normal children), he was able to stabilize and return to prior functioning. When he contracted strep in February, he plummeted and regressed to behaviors that had been gone for a year. I only knew he had strep b/c he woke one morning and OCD was off the charts. He didn't run a fever, was completely asymptomatic- except for the psychological/behavioral symptoms. Even the pediatrician we took him to wasn't going to run a strep test until we demanded it- and it was quickly positive. With PANDAS, the immune system is out of whack, and you won't get the typical response to an infection that you typically get."
"So how do you treat it?"
Me: There are several methods: our son has an Autism diagnosis (which is a behavioral diagnosis- so based on his behaviors, he qualifies as a patient with Autism), so we treat the behavioral symptoms with ABA (Applied Behavior Analysis). Some parents do prophylactic antibiotics to keep symptoms at bay. Some control "rages" or "flares" with IBprofin, as it is an inflammation of the brain which affects the child. Some parents follow a steroid burst, in which the high dose steroids intervene and temporarily stop the production of antibodies, decreasing the inflammation. Some treat the child biomedically, if there are several components that go into the make-up of the autoimmune response (in our case, it has caused an intolerance of wheat/gluten and dairy, so the elimination diet is appropriate). Yeast can also be an issue, due to the administration of antibiotics to combat the acute infection. And for some parents, they choose the big guns: IVIG (intravenous immunoglobin), which reboots the system., infusing new antibodies instead of the confused ones). or Plasmapharesis- it removes the bad antibodies by taking out the blood, cleaning it, and sending it back into the body.
"Can you cure him?"
Me: I'm not sure. Some PANDAS doctors have very favorable results (over 70% success rate with patients returning to 90-95% functioning). Some doctors have told me to save my money and apply it towards ABA. However, using my lead therapist's analogy, it's like trying to get a runner with a broken foot to run again by only using PT and not allowing the bone to heal, stabilize it, or intervene with surgery...you aren't getting to the root of the problem.
The last question always hits me the hardest. I may not be able to cure him, but I can recover him as best as possible. But recovery is always more difficult when you feel that you have to pull out your graphs and charts in order to validate your son's diagnosis...even though it is what you have believed since day one.
The IOP therapist passed this article on to me and I found it completely worth the read- one of the best I have read in a long time. I will attach the site for the article, but here are the key points, straight from the article:
-PANDAS is thought to be similar to Sydenham's Chorea, an autoimmune disorder in which antibodies meant to fight strep infections attack the basal ganglia of the brain, resulting in an uncontrolled flailing of the extremities, trunk, and facial muscles, for a period of weeks or months.
-The cause of PANDAS is thought to be the following of a sequence of events: a genetic predisposition to an abnormal immune response, followed by the creation of an antibody that interferes with neuronal activity, and finally a breach in the blood brain barrier, thought to be due to inflammation, that allows the antibody to reach neuronal tissue and interfere with functioning.
-Typically developing children experiencing strep infections produce antibodies that assist the body in deactivating and removing the strep antigen. The immune system remembers the surface of the strep antigen and antibodies are quickly produced in subsequent infections. This process becomes problematic in children with PANDAS- basal ganglia cells have a surface that is similar to the surface of the strep antigen. When antibodies from the blood of children with PANDAS cross over the blood brain barrier, they mistakenly "recognize" the basal ganglia cells as strep antigen, sending antibodies to deactivate the antigen. Rather than destroying and deactivating the basal ganglia cells, the antibodies appear to attach to neurons and interfere with neuronal signaling by increasing calcium-calmodulin dependent protein kinase II production in the basal ganglia, eventually affecting production of neurotransmitters, such as dopamine.
-Researchers have found significantly higher levels of the antibodies that trigger basal ganglia neuronal call CaM kinase II production in children with PANDAS, indicating that PANDAS is different from traditional OCD, ticks, ADHD, or Autism (which the child can be initially diagnosed with due to behaviors).
-Exacerbation of PANDAS tends to be sudden and severe, with a gradual return to baseline, followed by another spike in symptoms with a repeat infection. This is different from typical OCD, which usually follows a wave-like waxing and waning.
-PANDAS diagnosis takes into consideration the temporal association with infection, response to treatment, and the pattern of abrupt onset followed by slow recovery.
The article is Pediatric Autoimmune Neuropsychiatric Disorders by Janice Toma and Trudy Posher, from www.aota.org
"What does he have? PANDAS??"
Me: "Yes, he has PANDAS- Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep. He was typically developing until he contracted a strep virus at 17 months that attacked his basal ganglia, crossing the blood brain barrier and activating an autoimmune response. Sensory issues and OCD issues started to develop post-infection, and a repeat infection this February unfortunately confirmed this diagnosis with a severe regression."
"Isn't that a controversial diagnosis?"
Me: "Yes- but the big controversy isn't if it exists- it has been proven over and over again. It is controversial in the name that you give it. Some call is PANS (Pediatric Acute Neuropsychiatric Syndrome) or PITAND (Pediatric Infection-Triggered Autoimmune Neuropsychiatric Disorder); however, with our son, we know that strep is the trigger. He contracted the flu in January, and although he did have slight regression (common with normal children), he was able to stabilize and return to prior functioning. When he contracted strep in February, he plummeted and regressed to behaviors that had been gone for a year. I only knew he had strep b/c he woke one morning and OCD was off the charts. He didn't run a fever, was completely asymptomatic- except for the psychological/behavioral symptoms. Even the pediatrician we took him to wasn't going to run a strep test until we demanded it- and it was quickly positive. With PANDAS, the immune system is out of whack, and you won't get the typical response to an infection that you typically get."
"So how do you treat it?"
Me: There are several methods: our son has an Autism diagnosis (which is a behavioral diagnosis- so based on his behaviors, he qualifies as a patient with Autism), so we treat the behavioral symptoms with ABA (Applied Behavior Analysis). Some parents do prophylactic antibiotics to keep symptoms at bay. Some control "rages" or "flares" with IBprofin, as it is an inflammation of the brain which affects the child. Some parents follow a steroid burst, in which the high dose steroids intervene and temporarily stop the production of antibodies, decreasing the inflammation. Some treat the child biomedically, if there are several components that go into the make-up of the autoimmune response (in our case, it has caused an intolerance of wheat/gluten and dairy, so the elimination diet is appropriate). Yeast can also be an issue, due to the administration of antibiotics to combat the acute infection. And for some parents, they choose the big guns: IVIG (intravenous immunoglobin), which reboots the system., infusing new antibodies instead of the confused ones). or Plasmapharesis- it removes the bad antibodies by taking out the blood, cleaning it, and sending it back into the body.
"Can you cure him?"
Me: I'm not sure. Some PANDAS doctors have very favorable results (over 70% success rate with patients returning to 90-95% functioning). Some doctors have told me to save my money and apply it towards ABA. However, using my lead therapist's analogy, it's like trying to get a runner with a broken foot to run again by only using PT and not allowing the bone to heal, stabilize it, or intervene with surgery...you aren't getting to the root of the problem.
The last question always hits me the hardest. I may not be able to cure him, but I can recover him as best as possible. But recovery is always more difficult when you feel that you have to pull out your graphs and charts in order to validate your son's diagnosis...even though it is what you have believed since day one.
The IOP therapist passed this article on to me and I found it completely worth the read- one of the best I have read in a long time. I will attach the site for the article, but here are the key points, straight from the article:
-PANDAS is thought to be similar to Sydenham's Chorea, an autoimmune disorder in which antibodies meant to fight strep infections attack the basal ganglia of the brain, resulting in an uncontrolled flailing of the extremities, trunk, and facial muscles, for a period of weeks or months.
-The cause of PANDAS is thought to be the following of a sequence of events: a genetic predisposition to an abnormal immune response, followed by the creation of an antibody that interferes with neuronal activity, and finally a breach in the blood brain barrier, thought to be due to inflammation, that allows the antibody to reach neuronal tissue and interfere with functioning.
-Typically developing children experiencing strep infections produce antibodies that assist the body in deactivating and removing the strep antigen. The immune system remembers the surface of the strep antigen and antibodies are quickly produced in subsequent infections. This process becomes problematic in children with PANDAS- basal ganglia cells have a surface that is similar to the surface of the strep antigen. When antibodies from the blood of children with PANDAS cross over the blood brain barrier, they mistakenly "recognize" the basal ganglia cells as strep antigen, sending antibodies to deactivate the antigen. Rather than destroying and deactivating the basal ganglia cells, the antibodies appear to attach to neurons and interfere with neuronal signaling by increasing calcium-calmodulin dependent protein kinase II production in the basal ganglia, eventually affecting production of neurotransmitters, such as dopamine.
-Researchers have found significantly higher levels of the antibodies that trigger basal ganglia neuronal call CaM kinase II production in children with PANDAS, indicating that PANDAS is different from traditional OCD, ticks, ADHD, or Autism (which the child can be initially diagnosed with due to behaviors).
-Exacerbation of PANDAS tends to be sudden and severe, with a gradual return to baseline, followed by another spike in symptoms with a repeat infection. This is different from typical OCD, which usually follows a wave-like waxing and waning.
-PANDAS diagnosis takes into consideration the temporal association with infection, response to treatment, and the pattern of abrupt onset followed by slow recovery.
The article is Pediatric Autoimmune Neuropsychiatric Disorders by Janice Toma and Trudy Posher, from www.aota.org
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