Yesterday was recognized as PANS/PANDAS awareness day in many states across the country. Hopefully it will gain national recognition as it is becoming more widespread and many doctors don’t even know about it.
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.
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
Symptoms are not better explained by a known neurologic or medical disorder, such as Sydenham chorea, systemic lupus erythematosus, Tourette disorder or others.
I first noticed Liam’s OCD when he was around two and he fell in love with Toy Story. His obsession with Toy Story resulted in an extreme need to collect every single Woody toy he could find. There was never a trip to Toys R Us that didn’t result in a full-blown meltdown unless he could get a new Woody toy. We stopped bringing him anywhere where he could see Woody toys for sale. Woody was his favorite toy in the world and when he played with him, everything had to be perfect. He had several of them, all with the trademark cowboy hat. Cool, right? Wrong!! Somehow Liam knew which hat went to each particular Woody and if he couldn’t find the right hat for the right guy, his day would be ruined unless we fixed it or found the missing hat. Those freaking hats gave me so much anxiety it was crazy. I remember the times we couldn’t find the right hat and trying to persuade him to be ok with a different hat that looked EXACTLY the same. I had no idea how he knew the difference but he did. You could say this was just autism but I knew it went deeper than that.
About a year later, I caught Liam washing his hands over and over in the bathroom. He couldn’t stop. He repeated the same actions over and over. You can see the video here.
About a year later, he began having motor tics. It all started with what looked like a shoulder shrug. He would do it all day, everyday for months. I could never get a great video of him doing it but you can see an example of it here.
Shortly after the “shoulder shrug” started, he began moving his nose and mouth just as frequently as he did his shoulders. We had NO idea what was going on. It was the end of winter and he had been sick all season long. Below is a video of his facial tics.
During this time he started having violent rages, talking about crazy scenarios almost like he was hallucinating. He started regressing in school and his coloring was like a two-year old. He would sing and walk in circles and seemed to be out of touch with life. I remember taking him to Friendly’s and he forgot how to use a spoon. He was eating mac and cheese (before we started GFCFSF) and was just moving the spoon around his plate, unable to scoop up his food. I sat there dumbfounded as to what the hell was going on! I couldn’t imagine how he could lose the simple skill of using a spoon. It seemed like we were losing him somehow. We had just lost him a year and a half earlier when he was diagnosed with regressive autism and I felt like we were finally getting him back, and now we had to deal with this?! It’s really scary when your child presents symptoms this drastic almost overnight. Luckily with the help of progressive doctors, he we was properly diagnosed. By using Omnicef and other medications, we were able to get him back on track in just over a year. He still has flare ups and I can tell when it’s happening now and we have to start an antibiotic immediately at an aggressive dose.
Liam recently went through such a difficult time. He would repeat number sequences over and over, told me he didn’t live in reality, I wasn’t his mother, he tried to jump out of a moving car and he had those uncontrollable rages again. My two-year old daughter was afraid of him. Once we started him on the proper medications, he came back to us. I know I will have to put him on an antibiotic most of the winter. I hate having him on it so often but it’s really the only thing that works.
Many children with an autism diagnosis also have a PANDAS or PANS diagnosis. Unfortunately there is not a lot of awareness about the latter but more and more people are speaking out and letting people know about this disease. To learn more, please go to www.pandasnetwork.org