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The mother of this Child is a Pediatric Nurse Practitioner, at a Boston Hospital. This is the ONLY CASE WHERE PROMPT ANTIBIOTICS WERE ADMINISTERED. This child is symptom free on daily prophylactic antibiotics.

Prior to the events of last summer my son had always been a healthy, happy, really funny, articulate boy. He played baseball, basketball, floor hockey and football. Had lots of friends and was viewed as a nice boy. He never had any psychiatric issues in the past. He was small but otherwise completely normal growth and development.

June 27, 2008, my birthday, I looked forward to an evening away with my husband. We went to Portland Me. We had a great dinner and walked around the city. It was a lot of fun. Our older 2 children ages 17 boy and 15 yo girl were home with their grandmother. Our youngest, stayed over his best friend's house. I had no idea that my world was about to change.

The cell phone rang at 1:45 am, it was my 11yr old son, he spoke to his dad and explained he didn't feel well. He couldn't fall asleep, felt like throwing up and his throat hurt. He is a boy that does not complain unless there is really something wrong. He said he didn't want to eat or drink anything because his throat hurt. He thought he could last the night but didn't think he could go to his friend's birthday party the next day. This was odd to us because the party was at Fenway Park and our 11 yr old son is the biggest Red Sox fan ever.

My husband and I arrived home at mid-day and found our son had become a different person. He even looked different, panicked looking, pupils dilated, he was hiding behind the bar in our family room. His grandparents appeared very distraught and said our son was acting very strange. At first our reaction was that he didn't sleep the night before, wasn't feeling well and was really out of sorts. However he was making comments like "I can't eat that because you might have done something to it" at one point he used the words "how do I know you didn't put poison in it?" He was panicked that there might be something bad in anything he might eat or drink. He said his throat hurt and he couldn't eat or drink anything but when we tried to give him some Advil he completely freaked out. He had never refused medication before.

We quickly realized that something very wrong was happening but couldn't begin to imagine what. My heart sank when I saw him. It was like my son was gone. He seemed not to trust us. It was an unbelievable change from the previous day. Our next reaction was to think that something traumatic happened the night before but when we called the mom (a close friend) from the sleepover she confirmed that our son hadn't felt well but nothing unusual happened at the sleepover. Our son said the same thing, he didn't feel well and couldn't sleep.

We tried to say he must just be tired and hungry and once he gets his blood sugar up he'll be fine. Unfortunately it was very difficult to get him to eat anything that day. We eventually bought him McDonalds, he ate a little, and at that point we thought with a good night sleep he'd wake up the next day and be himself. But he wasn't.

The next day he was even more withdrawn from us. He was afraid to be near us. He didn't want to touch us or us to touch him. We have 3 dogs and a cat that he loves but he wouldn't go near them. He was almost devoid of any typical characteristics of his personality.

We took him to the emergency room. The triage Nurse asked what his chief complaint was and I had tears in my eyes and explained that he seemed to have a break with reality. I said I didn't know, but he has extreme sudden onset severe anxiety.

I tried to use my clinical knowledge to formulate a list of rule outs. I thought he must have encephalitis, or a brain tumor, or an acute psychiatric issue. Although I had been in neurology for many years psychiatry was an area I knew little about. His weight that day was down 10 lbs from his last recorded wt. He was 58 lbs. I was frightened. He was primarily focusing on "chemicals" he would not touch anything that had a chemical-- (i.e.; soap, toothpaste, Purell or any food that had the word artificial). He was reading labels on anything he ingested. He completely lost it in the emergency room after his blood was drawn, not because of the needle, but rather that the MD used an alcohol wipe to clean his skin. I tried to show him that the wipe could not hurt him by demonstrating it on myself. He wouldn't come near me for several days after that because I was contaminated, he said that if he touched anyone or anything that had been cleaned then the chemical would touch him and hurt him. He looked at me with contempt like I intentionally did something that hurt him and it broke my heart. He would not use the arm that they drew the blood from. He kept it raised above his head while he was awake. He couldn't let that arm touch anything. At one point a few days later he came outside to play baseball but he just let the ball hit him rather than using that arm. I thought to myself what happened?

We knew something was very wrong. Did he somehow get into something, illegal drugs, we were desperate to make sense of it. The psychiatry resident from the ER gave him the diagnosis of OCD and recommended a day treatment program. It was a holiday so it was a few days before we could get in to the treatment program. In retrospect I am disappointed that the ER resident and the Psychiatry resident did not do a throat culture. They did however do a toxicology screen and thyroid studies and a CBC all of which were within normal limits. The other symptoms he had in the ER were a slight but noticeable tongue thrust tic/rubbing his nose frequently, He was also moving his fingers. They looked initially like wringing. Like nervous pill rolling. He also had a bunch of new warts on his hands and knees and cankers in his mouth.

The next several weeks were hell, my husband and I were not able to leave him at all. (Separation Anxiety) Even his grandmother who is a constant fixture in his life couldn't take care of him. He rarely spoke except to relay some obscure baseball statistic. He wasn't actually talking to us it was more like at us. It seemed like a calming technique.

My husband and I knew he was not our son. It was very difficult not to take his silence and fear as an insult. We spent so much time and energy just trying to keep him calm. Words cannot convey the fear and frustration we felt, it was truly the most difficult thing we have ever been through, it was constant 24 hours a day we were living minute to minute. OUr employers were very supportive and one of my colleagues even donated some of her sick time so that I could be home with my son. I was able to work when my husband would stay home but the emotional toll of leaving him was devastating.

He had to be present while all of his food was prepared. He had to go to the grocery store and keep all of his stuff separate in the shopping cart. At home, his food had to be stored in a place where he felt no one would touch it. Any disturbance in the routine would bring on a severe anxiety attack and he wouldn't eat or drink. We walked on eggshells to try to set limits but also get some much needed calories into him.

He couldn't brush his teeth. He couldn't go in certain rooms of the house. He wouldn't talk outside. He couldn't say he loved us, which he previously did everyday.

It was so painful to watch him sit in the same chair watching baseball and Sport Center all day. His only dialogue with us was an almost continual barrage of sports statistics. Our previously outgoing and well liked son couldn't call friends. The one time we had a couple friends come over to our pool was a disaster, he couldn't even be near the pool because it had chemicals. My husband and I had to make excuses and try to minimize his bizarre behavior. He was always such a funny kid but it was like his sense of humor disappeared and was replaced with anxiety. He was flat most of the time except for periods of crying.

We contacted every psychiatrist and treatment program we could. It was exhausting being on the phone all day while sitting watching him decompensate and wondering if this was what he was going to be like forever.

Our son was not only phobic of chemicals he was also monitoring his fluid intake and drinking minimal amounts. He was obsessed with the exact amount of fluid he drank. He has always been a small kid but his weight dropped to the 3%. We also noticed he had to use the bathroom fairly frequently.

He had hand movements that looked like his fingers were continually in motion. I noticed them more when he was watching TV and when he got stressed. But for several weeks they seemed to be continual (except for sleep). These lessened over time but persisted when he was stressed through early September.

Because of his severe fear of chemicals We were not able to get the much needed throat culture or strep levels until several weeks after the onset of his symptoms. On 8/7/08 the results were ASO 192 (ref range 0-149) and Antidnase B 680 (nl<170). We then got the throat cx. It took us 2 hours of coaxing and hand holding to get the throat cx which came back negative. His anxiety was off the charts. I am a pediatric nurse with 20 years of experience and I had never seen anything like this. I couldn't get him to take the med prescribed by the psychiatrist although I knew he needed some relief. Our psychiatrist was very compassionate and spent a great deal of time using strategies to help him finally take Celexa once he overcame the phobia of the medicine taking he took it for us and was able to take the antibiotic.

He was treated with a 10 day course of antibiotic for strep infection. This was now several weeks after onset of PANDAS. He didn't continue the antibiotics after the 10 day course. His next labs were drawn on 9/4/08 the ASO was 202 and the Antidnase B was 960. We finally made our way to a pediatric rheumatologist by early September and by this time our son was on the mend coming back to himself. This doctor was familiar with PANDAS and felt this was a convincing case although he was quick to tell us that not an absolute diagnosis but strong enough to warrant further assessment with periodic strep titers and prophylactic antibiotics. The rheumatologist likened PANDAS to Rheumatic fever. My son underwent Tonsillectomy in October of 08.

My son has had several illnesses this year including testing + for influenza. The great thing is that with each illness he has not had any trouble with OCD, or anxiety which in my mind strengthens the hypothosis of strep being the trigger.

As of the writing of this it has been 1 year since onset of symptoms. He is 100% himself.

I thank god every day. But I live in a constant state of worry that it will happen again.

He has no fear of chemicals and no fear of separation. Although he doesn't like a throat culture he has no problem getting his blood drawn. A far cry from last July when he ran from the lab because he was so terrified of the alcohol wipes and being touched. We have worked with the psychiatrist and psychologist, however he no longer needs to see either. When he first started with this illness we saw the psychiatrist twice a week! He started seeing a psychologist at the world renowned BU Center for Anxiety disorder and she had recommended agressive inpatient Cognitive behavioral therapy. What a difference a few months and an accurate diagnosis makes.

In writing this I wanted to try to convey just how weird and out of character this whole thing was- during the worst of it I wrote down a list of his odd behaviors and I transcribed it here just as I had written it.

• Extreme anxiety/panic re substances; alcohol, smoking drugs even energy drinks. He would get frightened when anyone mentioned these things and actively avoided contact with them.
• Fear of all chemicals cleaners, toothpaste Refusal to bathe or brush teeth.
• Inability to use extremities that have been touched by chemicals or someone that touched chemicals such as an alcohol wipe.
• Inability to interact with peers/friends not wanting to hang out.
• Unable to make decisions asking is this ok? before he would eat or drink. He would make us say "it is ok" for every thing he put into his mouth as well as telling him exactly what he should do.
• Crying/emotional lability multiple times/day. I would find him crying and moaning while sitting in his chair. Several anger outbursts hitting himself and throwing things (fortunately this was not as common as the irritability).
• Refusal to come into parents room finally came in but had to have a chair brought in refusal to talk in the kitchen.
• Fear of rain - refusal to open mouth outside if raining.
• Would not leave his food alone even to go to the bathroom wouldn't let anyone to buy or prepare his food. He had to put it in the basket at the grocery store. He had to pour his drinks he wanted his food in his shelf in the cupboard and the fridge.
• Refusal to go into the local pharmacy.
• Frequent complaints of headaches.