PANDAS: Strep and OCD

One of the most frustrating things about living with autism is dealing with the unknowns. We don’t know for sure why this happened or how this happened to our child. We know of some things that might help, some things that definitely help (like speech therapy and OT), but we have no idea what our child’s future will be like as far as how much they can recover and function in society.

I listened to an interesting episode of The Autism Podcast recently. The guest was Beth Maloney, author of “Saving Sammy.” When Beth’s son was in middle school, he was diagnosed with OCD and later Tourette’s. Sammy was confined to home and faced being institutionalized for life. Sammy, Beth and their family had to deal with the stigma of a mental disorder, much as those of us who deal with autism do. She made a statement that really struck a chord in me. There are as many kids in the U.S. with OCD as there are with diabetes. Something like diabetes, a physical disorder, is treated with sympathy by society, but a mental disorder like OCD, Tourette’s or autism is treated like an embarrassment. This isn’t to say physical disorders do not deserve sympathy, of course they do, but mental disorders deserve the same compassion.

Long story short, Beth was convinced something else was going on in her son’s body. She had a gut feeling. She hounded the doctors to do more tests and it was ultimately found that he had a strep infection. Apparently there’s an OCD-type disorder caused by strep called PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Strep). What I came away with from this podcast was that it’s amazing what parents can uncover through being relentless.

Beth Maloney has appeared on the “Today” show and “Bonnie Hunt.” “Saving Sammy” is up for an Multiple Sclerosis Society Books for Better Life Award.

www.autismpodcast.org

Pica

The definition of pica according to WebMD is “the persistent eating of non-nutritive substances.” Apparently the name comes from a mythical bird that would eat anything. I’ve also read that pica is the Latin word for magpie, also unpleasant, but then so is pica. I never heard of it until my autistic son started eating non-food items.

It started with chewing on his sleeves & collar, then moved on to upholstery, pillows, carpet, towels. We can’t keep any stuffed animals in his room anymore. He also had a cute talking Elmo chair that we had to put in storage. We couldn’t bring him to the park, or outside at all for that matter, because he would try to eat the dirt, sticks, stones, cigarette butts, you name it.

Then the nastiest of all – his poop. At the advice of his neurologist, I stocked up on one-piece pajamas (luckily it was right before Christmas, so they were readily available at most stores). She felt it was related to sensory-seeking behaviors. As soon as he gets home from school, the jammies go on and he stays in jammies as long as he’s home. The doctor’s theory was that if we prevented the behavior in this way, eventually he would forget about it and the habit would be broken.

My son has a wonderful preschool teacher and therapists at school. Through occupational therapy and re-directing the sensory-seeking, he has gotten better in recent months. We can actually bring him outside without incident and occasionally can let him wear his school clothes for the rest of the day, as well as the occasional two-piece jammies!

I’ve read this is common in children with autism, but I’ve yet to meet another child/parent/family who is living with this. It’s such a disturbing thing to live with. Not only is it strange and odd (and gross), there’s the constant worry of intestinal blockage, poisoning – especially in a non-verbal child who cannot tell you where it hurts or even point to where it hurts. I’d love to meet another family who has lived with this to see how they dealt with it. On the bright side, it has gotten better and I always have hope for his future.