Today is P.A.N.D.A.S and P.A.N.S. Awareness Day.
For Liam, PANDAS has been one of the toughest things to battle. It begins almost overnight and is a monster to deal with. Liam regresses quickly. His handwriting is illegible, he becomes enraged constantly, he hears voices, has OCD, and sometimes gets tics. We are finally at the end of an exasperation period which is the time when symptoms flare up and medication changes are needed to help control symptoms. One of the causes of PANDAS is inflammation and this was the first time I’ve actually treated it with ibuprofen. It has been a godsend for us. Liam went from a (I hate to say this) mean, angry, impulsive child to a happy, well-adjusted one within days of starting it. The only thing we changed in his medication/supplement schedule was adding the ibuprofen along with increasing his Cednifir. It was incredible to see him change so quickly. The only thing we haven’t been able to get a handle on is his motor tics. Recently I took a video of his jumping tics. The video is kind of shaky because I didn’t want him to know I was recording him. This is the first time Liam has been able to talk to me about his tics. He said his brain makes him do it and he can’t stop. I asked him if he wanted to stop and he said yes but he can’t. It broke my heart.
PANDAS can be a devastating disease to battle. It is also very difficult to diagnose and many physicians aren’t aware of PANDAS or what symptoms to look out for. As of now, PANDAS can be diagnosed through parent reports and blood work. We recently ran Liam’s blood work through Moleculera Labs and did the Cunningham Panel, which is a series of five (5) assays. Four of these clinical assays or tests include enzyme-linked immunosorbent assays (ELISAs) to measure antibody titers against four neuronal antigens present in the brain. A fifth assay is used to quantify calcium/calmodulin-dependent protein kinase activity using a neuronal cell line to test for functional signaling antibodies against human neuronal cells. In the case of each analysis, the measured amounts from the assays are compared to normal control values; the normal control values are obtained from non-PANDAS subjects of similar ages using the same assays. Liam’s numbers were off the charts. It was kind of a relief to know for certain this is what we’re dealing with for sure, but also unfortunate knowing the severity of it.
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Here is some basic information.
P.A.N.D.A.S. is an abbreviation for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. It is an auto-immune disease which describes a subset of children and adolescents who have Obsessive Compulsive Disorder (OCD) and/or tic disorders, and in whom symptoms worsen following strep infections such as Strep throat and Scarlet Fever. Liam was exposed to Scarlet Fever several times during his early preschool years which may have been one of the catalysts.
PANS is a newer term used to describe the larger class of acute-onset OCD cases. PANS stands for Pediatric Acute-onset Neuropsychiatric Syndrome and includes all cases of abrupt onset OCD, not just those associated with streptococcal infections. Liam falls into the PANS category…as of now. All of his testing comes back negative for strep but he meets all the criteria for PANS. Children with the syndrome have the following symptoms:
Abrupt, dramatic onset of obsessive-compulsive disorder or severely restricted food intake.
Additional neuropsychiatric symptoms, with similarly severe and acute onset, from at least two of the following seven categories:
Emotional lability and/or depression, irritability, aggression and/or severely oppositional behaviors
Behavioral (developmental) regression
Deterioration in school performance
Sensory or motor abnormalities
Somatic signs and symptoms, including sleep disturbances, enuresis or urinary frequency
Tics both vocal and motor
If you want to learn more about PANDAS, please visit:
Here is a link to last year’s post!
Cunningham Panel via Moleculera Labs