P.A.N.D.A.S.

Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep (PANDAS) A year ago we had never heard of PANDAS but we were quick to learn what it does to a young child. Our grandson, Tristan, began acting out - or so we thought - by saying a particular curse word. And no matter how he tried he couldn't stop saying it. Then he would yelp - out of the blue he would have this loud scream, scaring himself probably more than us. We thought he had Tourette's Syndrome so my daughter took him to his Pediatrician. The thought that he had Tourette's was terrifying to me. But I did not feel in my heart that he really had this disorder, especially after reading about it. This behavior he was exhibiting came on suddenly, not over a period of time so I searched the internet to find something that would fit his behavior. He started having tremors, his hands would shake, his leg would tremor, it was just one thing after another. I continued to search every day and into the night. I cried a lot and I was so worried about him.

He was such an outgoing little boy and now when he came for a visit he ran from his truck into our house with his sweatshirt covering his mouth for fear someone would hear him scream. One night I told him that when he was with us he didn't have to worry about what came out of his mouth that he couldn't control, we loved him no matter what - he looked at me and asked "Gigi, does God love me too?" Well, you know what happened, I couldn't look at him because of the tears but I told him that God loved him best. Then I decided to go on the internet again and I typed in "Symptoms mimicing Tourette's" and PANDAS came up. I read everything I could about it, I saved every website I found and forwarded a few to my daughter. He went to his doctor and she said it sounded like Tourette's, she sent him to a Neurologist and he said, it's Tourette's and did not even suggest it might be anything else.

The day before Thanksgiving we received the results of his blood work. His doctor said she didn't want my daughter to go through the holiday weekend without telling her she thought Tristan had PANDAS, not Tourette's. What a relief, PANDAS was treatable with an antibiotic!! He went on the antibiotics and almost immediately we saw an improvement. He must have had an infection he never complained of a sore throat or of being sick. Apparently, the blood test showed his blood titers were off the chart with streptococcus. Within a few weeks he was not exhibiting any of the symptoms he had before. Who would have ever thought that something as simple as a strep infection could cause so much damage? And why aren't more doctors aware of this?

Tristan is not cured of PANDAS but he does not exhibit any symptoms, but that could change if he should become ill again. But with the antibiotics he can control the illness. You would never know to look at him today that he ever had anyting wrong with him. But it makes me wonder how many children out there that have been diagnosed with Obsessive Compulsive Disorder or ADHD or Tourette's without having the test to check first for an infection.

There is a wonderful lady named Beth Mahoney in Massachusettes who has a son named Sammy. Sammy lived a year with severe OCD before being diagnosed with PANDAS. He is now in college and doing well. Recently, Mystery Diagnosis did a show about him called "The boy who hopped". She is tirelessly working to spread the word so other children will not have to suffer like her son.

Please check these websites to find out more on PANDAS:
www.savingsammy.net
www.jamiesstory.wordpress.com
www.pandasfoundation.org

I will be updating this page as more information is made available. If your child starts behaving in any of the ways listed below, please ask your doctor to do the blood test, it just may be PANDAS, and the sooner it is caught the better.

Obsessive Compulsive Behavior, verbal and motor tics
ADHD Symptoms - hyperactivity, inattention, fidgety
Separation Anxiety - Child is clingy and his difficulty separating rom caregiver
Mood Changes - irritability, sadness, emotional swings
Night time bedwetting, daytime frequency in urination
Sleep Disturbances
Joint Pain
Fine/Gross Motor Changes - e.g., changes in handwriting

(can include repetitive behaviors, excess fear of germs, hair pulling, eating disorders)