The story of one mother’s fight against the medical establishment to prove the link between infection-triggered PANDAS and her son’s sudden-onset OCD and Tourette syndrome.
The summer before entering sixth grade, Sammy, a bright and charming boy who lived on the coast of Maine, suddenly began to exhibit disturbing behavior. He walked and ate with his eyes shut, refused to bathe, burst into fits of rage, slithered against walls, and used his limbs instead of his hands to touch light switches, doorknobs, and faucets.
Sammy’s mother, Beth, already coping with the overwhelming responsibility of raising three sons alone, watched helplessly as her middle child descended into madness. Sammy was soon diagnosed with obsessive-compulsive disorder (OCD) and later with Tourette syndrome. Unwilling to accept the doctors’ prognoses for lifelong mental illness and repeated hospitalizations, Beth fought to uncover what was causing this decline. Beth’s quest took her to the center of the medical community’s raging debate about whether OCD and Tourette syndrome can be caused by PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections). With the battle lines firmly drawn, Beth searched until she found two cutting-edge doctors who answered that question with a definitive yes. Together, they cured Sammy. Five years later, he remains symptom free.
|Publisher:||Crown Publishing Group|
|Product dimensions:||5.19(w) x 7.95(h) x 0.58(d)|
About the Author
BETH ALISON MALONEY is a successful Maine attorney and guardian ad litem. Before moving to Maine, she was an executive and attorney in the motion picture and television business in Los Angeles. Saving Sammy is her first book.
Read an Excerpt
Daniel A. Geller, M.D.
Director, Pediatric OCD Program
Massachusetts General Hospital
Child and Adolescent Psychiatry, Yawkey 6A
55 Fruit Street
Boston, MA 02114
Dear Dr. Geller:
Enclosed please find the completed registration forms for my son Sammy. As you know, we are coming to see you next week on the advice of Dr. Catherine Nicolaides of Marlton,
I thought it would be helpful to provide you with this overview of Sammy's history and current behaviors. The problems suddenly started sixteen months ago, shortly after he turned twelve. Among other things, he stopped eating and lost twenty pounds.
Sammy does not seem to have obsessions, but he certainly has compulsions. His compulsions fall into two categories: rituals and avoidance.
He likes to start the morning with something he calls "the usual." When he asks for the usual, that means he wants five drinks: milk, orange juice, apple juice, pink lemonade, and grape juice. He pinches his nose when he sips and drinks them in a certain order. The drinks do not all have to be at the same level in the cups. They do not have to be in any particular cups. He just needs all five juices, every morning.
He has to go through a series of complicated motions before he'll go into the bathroom, before he comes back into the house from being outside, when he first gets into the house, or when he walks through a parking lot—in short, everywhere he goes.
This might involve swirling his legs, ducking, crawling, rolling his head on his neck, stepping sideways, or high-stepping over a nonexistent barrier. At our home, he has to do these in the exact same spot each time. The ritual itself might be different, but the spot does not vary. It is a major effort for him to walk upstairs in the house. He has to hold his breath while he runs up the stairs,
stopping midway on the landing to duck his head into a cabinet and gasp for air. When he needs to do a whole series of compulsive behaviors, we have to leave the room. I don't know if this is so that we don't see him or so he can give the routine his full attention—and thus do it exactly right.
There are many things he avoids, including all mats, doors,
and faucets. He does not shower or brush his teeth except at the hotel where we stay in New Jersey (when we go to see Dr.
Nicolaides). Even then, he does not use soap. He told me that he is going to try to take showers at home, at noon, on Saturdays,
beginning this weekend.
He is very careful about what he touches and what touches him. Hugs are out of the question. He does not flush the toilet. He does not wash his hands. He does not touch light switches. He does not touch his food. He uses either utensils (only those with a silver handle) or a paper towel or napkin to hold, for example, a slice of toast. He will not open a door (house or car). He will not step on a rug. He avoids or jumps over the white stripes in a parking lot.
He has started answering the telephone, using a tissue to grasp the receiver, but he holds it away from his ear and shouts.
At the computer, he previously covered the mouse with a napkin,
but lately he touches it directly. He prefers to run outside to urinate, rather than enter the bathroom (about which he thinks I don't know). But because he cannot touch a door handle, he must find someone to open the outside door. If he can't find someone, he will use the bathroom because I make certain the door is always left ajar.
He will not wear a coat or jacket. If it's raining, he gets wet. If it's freezing, he gets cold.
Last year he would not wear socks or shoes. Now he wears socks all the time, wears shoes whenever he goes outside, and cringes if anyone is in bare feet. Consequently, we must all wear socks at all times. Even sandals are a problem. The issue is primarily bare toes, but heels are also troublesome.
He only likes to wear certain colors—preferably khaki and green. For a while he wore the same clothes for months, but thankfully he now changes them at least once a week.
He would never hurt himself or anyone else.
If he thinks he is being too demanding, he gets teary-eyed.
He used to ask me to do certain rituals (such as carry his food a certain way), but I wasn't especially cooperative. He no longer asks.
I'm tired just from typing all this loopy stuff, so it must be a full day's work for him to keep it straight.
He is not able to attend school. A tutor comes to the house.
He stands and moves in the shape of an upside-down L.
Prior to the onset sixteen months ago, Sammy did not exhibit any of the behaviors outlined above, with one exception.
Four years ago, in the winter of third grade, he started having a tough time. He would curl the fingers of his left hand up and into his sleeve. We eventually figured out that he had a learning disability in reading. With a special reading program in place to address this challenge, the hand gradually dropped down and out of the sleeve.
I have enclosed a chart tracking Sammy's medication history.
Thank you very much, and we look forward to meeting you.
Odds are he'll be the one wearing the khaki pants and green shirt.
cc: Dr. Catherine Nicolaides
Dr. Conner Moore