PANDAS: A link between strep throat and OCD

My son is 8 and on Thursday began developing facial tics that included eye rolling, blinking and head jerking. I began looking for information about what could be wrong after we noticed it several days in a row.

I found information on this condition not knowing that there was a potential relationship between group A-strep and the sudden onset of OCD and/or tic disorders. He had strep A within the last 4 weeks and his strep culture just came back positive again. However, his titer levels were considered within normal limits.

We have noticed an increase in his activity level, decrease in some of his writing fine-motor skills and of course the tics (which occur 5-8 times per minute). We have not noticed any OCD behaviors or some of the other behaviors that they have linked with PANDAS (separation anxiety, decline in math calculation, etc.) Our school has been trying to keep us updated about what they're seeing during the day as well.

Right now we're just watching and waiting to see what happens. He's on a course of antibiotics for the active strep infection and we're downplaying the tics so he doesn't become concerned or self-conscious about them. We have 1 more week of antibiotics, then another strep culture will be done to see if he continues to test positive.

I know that symptoms can become very severe in some children, so we're considering ourselves fortunate that his is limited to a tic disorder and symptoms that don't prevent him from daily function and academic participation.

This article was well-done...very user-friendly. We don't officially have a dx of PANDAS yet, but I am convinced this is what my son has after all of the research I have done on this condition.

My 6 year old child who has PDD NOS was very ill at Christmas and given breathing treatments and not tested for strep. His class had 5 cases of strep and some scarlet fever, 2 weeks later I tested positive for strep. His behavior in January was very OCD and very difficult behavior with his eyes looking weird (which happens at times). But whenever his eyes look like that I know his behavior will be aggressive, defiant, and difficult and yet he is typically a very compassionate, loving child. His OCD increased during this time with a very weird "scratching behavior". My question - have you heard of PANDAS causing motion disturbances or carsickness. My son has never been car/bus sick since birth and we travel alot and he has been in school for 4 years. He gets sick at least once a week since Christmas and he is a sensory kid who usually craves rollercoasters and extreme sensory input. I haven't been able to find anything regarding visual/motion disturbances but would be interested to find out if any other kids suffering from PANDAS have had this happen.

My 10 year old had strep at 6 months and prob. 6 reocurring strep infections after. His tics developed almost overnight. He calls them his habits. He can go months without any and then develop a new one like blinking, opening mouth over and over again, His latest was a head jerking movement that was pretty constant. He also has adhd and oppositional issues. I know a fair amt. of info on pandas from a friend who's son had pandas but is now symptom free from ivig and antibiotic treatment. Does this sound familiar to others. That adhad could too be a symptom of pandas?

My name is Linda. We have a 10 year old son, Hunter, who was ill in December along with one of his brothers. My husband and I were out of town for the few days that the boys had fever and were ill. Never went to the doctor. Several days later we began to see changes in Hunter's behavior and attention. Teachers reported that it was as if someone had switched off a light. Took him to his pediatrician because Hunter reported that he could not focus and he was having sudden intrusive thoughts. Things then began to get worse...OCD type behaviors, lost in the hall at school, bed wetting, not able to speak or eat, odd thoughts, walking around the house with his face against the wall, crying,... We removed him from school and took him to see a psychologist. Could not explain and had not seen this type of OVERNIGHT regression before. Thought about hospitalizing him. Dr. said that it looked like Post traumatic stress. To us it looked like a nervous breakdown. Kept him out of school and made an appointment with Dr.---PhD, MD, FAAP (Pediatric Neurologist) in the Houston Medical Center. He asked us if we have ever heard of PANDAS and said that he is not stating that this is what he has because it is not a confirmed medical diagnosis and he has not seen a patient with this before. My husband and I have read what little we could find on the topic and it describes what happened to Hunter almost exactly. Hunter has been improving and has been put on Prozac, but not sure if this is the correct thing to do. (could be temporary OCD???) No one seems to be able to give us any direction on where to go from here, what to expect, is this permanent damage to his brain, or how to protect him from this again. Should we contact researchers on the subject? Are there doctors looking for people who may have experienced this? I keep fairly detailed information and documentation on Hunter. I looked back at my documentation and found that Hunter had a short "Odd" type of "episode" last year and I was able to see that this also followed an illness of Strep. (As a side note: Simultaneously, while we were dealing with this with Hunter...we were also dealing with HSP (another rare autoimmune illness followed by Strep, with the son that had Strep at the same time Hunter was ill.) Dr. --- is having Genetic testing done and has ordered 2 different titer tests for evidence of previous Strep.

Would you happen to know of current research or researchers that we could contact or studies to join? We would be willing to go or do whatever it takes to avoid another reoccurrence of this very scary illness / episode. My doctors have been nice and willing to listen, but I would rather have a doctor with experience in this and leading us rather than us leading them. Houston Area Doctors???

One of our sons came home from school, in the first grade and started to wash his hands non stop. He would take a step away and then step back and begin washing and he couldn't pull himself away from the water. A day later he had a fever and then a rash. Scarlett fever. Four of his classmates in his NYC elementary school had it at the same time. We now have a younger son who has down syndrome and ASD. The Southwest Autism Center told us he had PANDA. This younger son who has continual ear problems and surgeries, also has permanent OCD with water and other things, but water is his main issue. The most common cause of middle ear infection is strep. The Down Syndrome population is OCD from ear issues, I believe and not just stubborn. Studying indivuals with Down Syndrome, may open up understanding in this field, because their anatomy is more likely to harbor strep, in their middle ears.

If you need a list of DOCTORS helping with PANDAS the following web links will help.

http://www.latitudes.org/forums/index.php?showtopic=3928&pid=35170&mode=threaded&start=#entry35170
(this is a parent generated list)

www.pandasnetwork.org
(send them a request for doctor's name in your state)

www.savingsammy.net
(send Beth Maloney a request for a doctor's name in your area)

My daughter has experienced all symptoms of PANDAS with positive strep tests for the past 3 years. Once we started antibiotics, the symptoms would slowly resolve. Our pediatrician recommended reading up on PANDAS but nothing further. This year, we were really struggling to clear up the infections- we would go through three courses on antibiotics on average to finally get it cleared up. We had her on clindomiacin (?) along with rifampin (?) and still weren't able to clear it. We finally had her tonsils and adenoids removed in August. After the surgery, she broke out in terrible hives all over her body- esp legs- along with swollen ankles and wrists. We took her to the pediatrician and they tested for strep. This test came back negative, so they told us it was a reaction from all of the antibiotics. It did clear up within a few days on benedryl, but the OCD symptoms were back. I had them test her three more times over the course of a couple of months and all were negative. They finally recommended seeing a psychiatrist, who diagnosed her with OCD and generalized anxiety. I am having trouble believing this since the symptoms always resolved on an antibiotic before surgery. They are hesitant to test her titer levels since we know there was an infection right up to her surgery. I could use a doctor who knows PANDAS well and can give us a definite diagnosis. Our psychiatrist doesn't believe it's PANDAS and put her on Zoloft. She reacted terribly and we had to take her off after a week. Would you recommend a neurologist? We are in the Chester County, PA area.

Has anyone experienced their child having underarm pain or problems with tight clothing, during an active time of PANDA, or when a child has strep?

My son will not even put on a coat (it's winter in MN) because he cries that his arms are in SO much pain. It is heartbreaking! He had this condition previously and then it went away for 8 months and now is back full force. He currently has strep and we just found this web site. Could it be this?

Thank you.

On October 7, 2009, after a couple of days of fever, my 8 year old son was diagnosed with Type A Influenza. Exactly one week later on October 14th, he suddenly began crying constantly, confessing things, and having obsessive thoughts. I became very concerned, being as though on Tuesday he was fine and on Wednesday things drastically
changed. This behavior continued and I brought him to a therapist. The therapist told me that he had OCD and that it was more than likely caused by “an emotionally traumatic event.” I also brought him to his pediatrician, because I felt like there had to be a medical explanation for this. This doctor told me the same thing as the therapist. There were no changes in our family, home, or school life that would constitute an emotionally traumatic event. Over the past year, he has had strep throat a couple of times. Could this be PANDAS????

My son is an intelligent, humorous, fun-loving, polite, honor roll student. He is now suffering in school, crying before school, taking days to complete short assignments, refusing to answer simple questions, and is unable to make any kind of decisions. He has also been very scared and worried about everything, from getting in trouble to ghosts in his room.

I’m not sure what steps I need to take in order to make this better. We live in Southwest Louisiana. Any suggestions??????

My mother was autopsied upon my request as a result of being morphined to death by a hospital. The autopsy showed, that though old, she was a basically healthy person except for scarring of her heart valves, which the forensic pathologist attributed to rheumatic fever. Rheumatic fever is caused by strep.

My mother had outbursts all her life, sleep problems, sustained anger and fatigue. Her children never understood her harsh, quixotic nature. Learning about the wide-ranging effects of strep finally sheds light on what may have been her underlying malady.

Oh, yes...she obsessed from my childhood till her death at 97 over a number of issues. Even as school children, we realized her obsessions were not normal, but we had no control over them nor on the effects on us.

I have a friend with OCD and wonder if someone could please send me more info as to how to get a doctor that understands this strep and ocd connection. Also the news cast that recently showed a segment on a 19 yr. old who had OCD and found out it was caused by strep. He is now well and going to college after treatment. I think this was aired on a news show with a doctor the weeks of Sept 7th though Sept. 22. Possibly the Denver news stations.

When my son was at the beginning of his fourth grade year he came down with a virus. He was sick with a fever for one week, I took him to the doctor asking them to check for an infection. They said there were no signs of infection and that the virus would have to take its course. He was back two or three weeks later with strep and then put on amoxicillian. He then continued to be sick with stomach problems and lots of diarreah. This went on for weeks until the Doctor tested his stool and we were told he had giardia. He was put on another anti-biotic. This helped. A week later, my son could not go to school one morning. He told me he was too sick when he was at school, he was extremely nervous, sweating, having a fast heartbeat, and stomach aches. He was having severe panic attacks. This was six years ago. He is not much better, we have to home school him. He very rarely leaves the house, and he gets very little relief from his anxiety. He was a great student, who played baseball and hockey, had many friends. Is it possible that my son could have PANDAS? Is it possible that he could come out of this horrible life that he lives? We live very close to Boston, and would appreciate any information on who we can see for a PANDAS diagnosis? Any help would be appreciated. Thanks.

I am in desperate need of answers regarding PANDAS. I am in St. Louis, and I'm hoping you know of a Doctor in the St. Louis, or surrounding area, that has some knowledge of PANDAS??

In October of 2008, shortly before our Son turned 8 years old, we suddenly saw his behavior change and he developed a shoulder "tic", along with these horrible "sleep episodes" (I've determined they were in between sleep walking and a night terror because he was extremely frightened and he could some what communicate with was during these episodes that lasted for 20-30 minutes). He had no signs of strep throat. School had just started at the end of August and we thought the behavior/tic were related to the new school year. So, we waited several weeks to see if the behavior/tic would subside.
Well, everything worsened, and we took him to the Pediatrician in December 2008. She looked him over and said he seems to look fine, but decided to do a rapid strep test, because strep can sometimes cause tics. It was positive, and he was given an antibiotic. He seemed to slightly improve about 5 days after started the antibiotic. Then, 12 days into the antibiotic (with only 3 doses left) all the symptoms were back and much worse. He finished the antibiotic, still no better, so I scheduled an appointment with the Pediatrician. In the mean time, he was so anxious, scared, and would not leave my side. He followed be throughout the house. He started seeing and hearing things "that were not there". I was frantic and I started doing some research on the Internet. That's when I found the PANDAS website and these symptoms:

ADHD symptoms (hyperactivity, inattention, fidgety)
Separation anxiety (Child is "clingy" and has difficulty separating from his/her caregivers. For example, the child may not want to be in a different room in the house from his/her parents.)
Mood changes (irritability, sadness, emotional lability)
Sleep disturbance
Night- time bed wetting and/or day- time urinary frequency
Fine/gross motor changes (e.g. changes in handwriting)
Joint pains
Our Son, HAD a sudden inset OF ALL of the above symptoms, and a positive strep test, a tic, and OCD tendencies. I printed the information I found and mailed it to his Pediatrician, along with a note explaining everything. (Our Son was also extremely sensitive/emotional and I didn't want to discuss all if this in front of the pediatrician during his appointment). A few days later, he goes to his 2nd appointment. The Dr. Has read the information I sent. She does a rapid strep, and he's positive. She then takes blood and the results show an elevated Strep Titer. She gives him another dose of antibiotics.
So, from October 2008-April 2009 he has had all the PANDAS symptoms. In April he is finally 100% back to OUR SON!

Our Son, does NOT have another strep infection (that we know of, since he never shows the normal fever, sore throat, ect) until June 2009, but the other symptoms are still present since October 2008. He gets another round of antibiotics...all symptoms are still present. The Pediatrician does not have any advice for me. She only gives antibiotics when there's a strep infection. She will not consider prophylactic penicillin, because of antibiotic resistance. She has no idea what my family has been going through for the last 7 months! On my own, I've took him to a neurologist, who referred him for an MRI and an EEG. The neurologist didn't seem to know what to do and said the MRI and EEG results were normal.

I started shopping at Wholefoods....our son doesn't eat anything with artificial colors or preservatives, and this helps with the ADD/ADHD symptoms. I also start an Omega/DHA supplement. He also drinks Pro-biotic filled Kefir and eats Pro-biotic filled Stonyfield Yogurt, in an attempt to boost his immune system. After about 6 weeks of this he has returned to our normal son.

From July 2009-September 2009, he does not show any signs of PANDAS.

School started in August.....5 days ago, Our Son started having a facial tic, ADHD symptoms, Mood changes, sleep walking, frequent urination. Yesterday I took him to the Pediatrician and told her I think he has strep. She asked his symptoms and looked at his throat and I could tell she thought I was crazy. His throat looked fine, he had no fever, ect. I reminded her of what happened last year and she agreed to do a rapid strep throat test. She looked surprised when she came back to tell us it was Positive. I knew it would be positive......and it starts all over again.

I am hoping and praying that the NO artificial colors or preservatives, and addition of Pro-biotics and Omega/DHA supplement to our Sons diet will help to make this round of PANDAS less severe and shorter than in the past. His school work, social life, family life, ect. are extremely impacted while he's experiencing PANDAS.

I have many questions and I would like to schedule an appointment with someone who can answer my questions, and hopefully give me some suggestions to help my son. It is my job to protect, nurture, and provide for my Son. I don't think I'm fulfilling my duties when I take him to his current Doctor. I know there has to be more than can be done.

While I don't feel, at this point, that his PANDAS symptoms are severe enough to warrant plasma exchange or immunoglobulin (IVIG), I do feel prophylactic penicillin would be helpful during the school year. Our pediatrician won't even consider that do to the antibiotic resistance, which I have told her would be a SMALL PRICE TO PAY for a PANDAS FREE child!!

Will PANDAS episodes get worse?
Will he out grow them? Or will this happen when he's 30 and contracts strep?
What else can I do to help him?

Thank you in advance for taking the time to offer any information you can.