Patient Comments: PANDAS - Symptoms and Sign

Question:

Please describe your child's PANDAS symptoms and signs. Submit Your Comment

Comment from: BoyMom, 7-12 Male (Caregiver) Published: September 11

My 9 year old gifted child has baseline anxiety. About three weeks ago he started asking me questions that alerted me to OCD (obsessive compulsive disorder); is the sun going to blind me? I looked at a reflection, am I going blind? Two weeks ago he started having food aversions, thinking food was “poison” and might kill him; he practically stopped eating. He lost 8 pounds! Then one day he had a repeated hand washing episode, crying he couldn't find a clean towel. I suggested PANDAS to our pediatrician and she ordered the ASO and anti-DNase tests.

Comment from: Debbieb, 13-18 Male (Caregiver) Published: January 04

I wonder if PANDAS can occur in teenagers. My son is 17 and has had many bad bouts of strep. In September 18 he had a very serious infection. He is suffering terribly with obsessive compulsive disorder and attention deficit hyperactivity disorder symptoms.

Comment from: Ann, 55-64 Female (Patient) Published: August 06

I am diagnosed with bipolar disorder, but I believe it is autism and depression. Around age 12, I was in school when all of a sudden I felt like I was hallucinating. I went to the nurse's office where it was discovered I had a fever, and subsequently was diagnosed with strep throat. I remember it all so vividly. Shortly thereafter, I developed eye tics. My medical history is always so weird about strep. I still hallucinate when I get strep throat, I think it is because of PANDAS.

Comment from: MaTeGe, 13-18 Male (Caregiver) Published: April 26

My son got very ill on a trip to Mexico. He was really sick and we got him home and on antibiotics. It never really got better. He started having really crazy thoughts and literally spiraled downward so fast. He was in a ball curled up in his room. We went to the emergency room (ER) and they couldn't come up with any reason. They kept testing him for drugs. After 3 visits to the ER, I frantically started calling anyone that would help other than drug testing him. We finally ended up at a psychiatric ER to have him assessed. They felt he was a threat to himself and was admitted to a juvenile psychiatric ward. One of the hardest days of our lives was to leave him there. From being a very normal active kid to being completely unable to function with no explanation. He was finally blood tested there for a routine CBC and he had elevated levels. They did a spinal tap against his will. We used it as leverage as a potential out of the psychiatric ward. So horrible but we didn't know what else to do. His fluid showed strep in his CSF (cerebrospinal fluid. They somewhat kind of diagnosed him with potentially having PANDAS. He is now an adult but suffers from OCD (obsessive-compulsive disorder) over his health and high anxiety in general. The medications allow him to live a normal life but so sad that he had this and now suffers daily from anxiety.

Comment from: socalmom, 25-34 Male (Caregiver) Published: April 04

In 1987 when my son was six years old he had 3 recurring strep infections and then developed scarlet fever. It was so severe that he had a rash and spots. A few weeks later, out of nowhere, came motor and vocal tics and ADHD (attention deficit/hyperactivity disorder) symptoms. His teacher in first grade noticed that the symptoms worsened after his being ill with strep. Even his handwriting at school was affected. For the next six months I went to various doctors including specialists who eventually diagnosed him with Tourette's syndrome. Since I noticed that the symptoms appeared after he had strep and scarlet fever I made sure he had antibiotics every time he got sick with a fever and sore throat. The symptoms lessened over the next 10 years. The ADHD went away and so did the vocal tics. Only the motor tics remained. People noticed but we never made a big deal out of trying to fix it. We just lived our lives. He did very well in high school and graduated as the top academic and athlete of the year in 3 varsity sports. I never felt that he had full blown Tourette's and back then no one knew about PANDAS. I am grateful for the medical research that found this connection between strep and motor/vocal tics. My son is now 33 and a successful businessman. We just accepted that he has tics off and on that is just part of him. But I definitely believe it was PANDAS after reading what is on this site.

Comment from: frustrated mom, 25-34 Male (Caregiver) Published: June 06

My adult son on the autism spectrum fits the criteria for PANDAS except he is an adult. He had a cold and sore throat about 10 months ago. He developed severe obsessive-compulsive disorder, stopped eating, had severe meltdowns to the point of police intervention, and is now taking a mixture of psychic medicines.

Comment from: shorty 4842, 3-6 Female (Caregiver) Published: August 04

My daughter was perfectly fine until February 2014 when she suffered illness, nothing major just cold like symptoms; virtually overnight she changed. She had trouble sleeping, whining and crying all the time, having meltdowns, constant defiance, all very unlike her. I was sure it was an ear infection and after months of going to the genera physician requesting a referral to an ear specialist (I have two other children who suffered chronic ear infections and their behaviors were just like this) I finally got a referral only to find hearing/ears are perfect. This was almost disappointing as I was sure she had (and still has) some sort of underlying infection; constant runny/congested nose, cough and even a faint rash on her body. None of the doctors I saw in 14 month period took any notice of the rash. They ended up suggesting I see a psychiatrist for behavioral problems. I was starting to think it might be Asperger's syndrome (as I have a child diagnosed with this) as the behavior, extreme anxiety, defiance, etc., were similar; the only difference is that I was sure this started with an illness and was very sudden. Finally I got a referral to our pediatrician who did a blood test and confirmed high antibody something, indicating scarlet fever or strep and so most likely PANDAS. I almost had to beg for penicillin as she didn't believe it would make any difference and having had it for the 10 days, I believe it has helped slightly. The pediatrician advised that the symptoms will just go away over time. We can't continue like this, while her symptoms aren't extreme i.e. OCD (obsessive compulsive disorder), and her behavior is so bad, it is really starting to define her.

QUESTION

Just about any painful sore throat is caused by strep. See Answer
Comment from: Gretchen, 35-44 Female (Caregiver) Published: July 08

My son's first PANDAS symptoms were sudden and severe separation anxiety after several bouts of strep throat. Symptoms resolved after 3 rounds of oral antibiotics. Three years later my son had sudden neck tic. One day with no tics, the next day with several tics every few seconds. He had no control and felt he had to repeatedly perform this motion to release the feeling only for it to build back up again. My son struggled with this for over 3 months before antibiotics finally reduced the tic. His strep titer was 8 times the normal. My son now takes a daily low dose of penicillin that keeps symptoms controlled.

Comment from: Concerned teacher, 7-12 Female (Caregiver) Published: April 15

A learner in my class has been diagnosed with PANDAS and is extremely disruptive in class. She is currently in a special needs school because she is diagnosed with hemiplegia.

SLIDESHOW

Sore Throat or Strep Throat? How to Tell the Difference See Slideshow

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