Discussion in 'General Parenting' started by TheBoyHasArrived, Oct 29, 2012.

  1. TheBoyHasArrived

    TheBoyHasArrived New Member

    Does anyone here have any experience with PANDAS? I'm typically an inside-the-box type of person...but my son has a range of issues/symptoms that are a little strange. His Obsessive Compulsive Disorder (OCD)/ADHD/behavior seems to cycle, which I have mostly just chalked up to a mood disorder that hasn't been diagnosed yet. But, he started with vocal tics last week and then woke up a couple of days later with pretty significant dysfluencies that have gone from bad to worse in the past couple of days. It's gotten so bad this week that he is getting frustrated and saying he "can't talk."

    It's not a typical stutter, and the sudden onset of symptoms has me worried. My local psychiatrist is NOT an outside the box type of guy and I am pretty sure will just tell me it's due to my son's special needs. Except, I really don't think it is. A google search of symptoms turned up PANDAS and kiddo has a significant history of strep infections...sooo, any experience??
  2. buddy

    buddy New Member

    Yes, I have known two kids with this. The first I took care of from age two months. When he was around 8 he started motor tics and it was found out that he had pandas. He tested positive for strep every time his symptoms flared. They put him on preventative antibiotics which ended up masking a strep infection (rapid and culture test was neg but blood test was positive ).so.he ended up with heart damage from the strep. The other boy was a student who again was found to only have the symptoms when he had a systemic bacterial or viral infection. The symptoms were gone when he was healthy.
  3. TheBoyHasArrived

    TheBoyHasArrived New Member

    Hmmm...most of K's symptoms are never "gone," (the Obsessive Compulsive Disorder (OCD) severity fluctuates significantly and the vocal tics are new) but it's hard because we don't know what symptoms are congenital issues and what came post-birth. I do know he had motor tics and Obsessive Compulsive Disorder (OCD) behavior that appeared suddenly and were very severe (how he got his Autism Spectrum Disorders (ASD) diagnosis), and the kids in his orphanage almost always had strep going around.
    I know PANDAS is probably a long shot, but the vocal tics started a couple of days after he was exposed to strep. He doesn't have current strep symptoms...but he never has symptoms. His rapid test was negative last time and they had to send it away to culture (doctor thinks he may be a carrier but have only tested 2x's). Since he has a diagnosis of Autism Spectrum Disorders (ASD), the psychiatrist blames it for most behaviors...except everyone with experience with Autism Spectrum Disorders (ASD) does not believe he is actually autistic. So, without that diagnosis, he just has a whole bag of strange behaviors-and my concern is, it sounds like PANDAS needs to be diagnosed and treated or it can do even more damage :( I am going to take him tomorrow after school for a strep test...if it's positive, I guess it's something to look into more closely.
  4. TerryJ2

    TerryJ2 Well-Known Member

    Definitely, look into the strep issue. I think it's a good idea.
    Where was he born?
  5. TheBoyHasArrived

    TheBoyHasArrived New Member

    Serbia. When we were there, husband had a strain of strep that had him thinking he was dying. And, kiddo had it too...with no symptoms at all.
  6. svengandhi

    svengandhi Well-Known Member

    My oldest son who is now 22 was given a diagnosis of PANDAS at NIH shortly before he turned 7.

    He was fairly normal as a child except for a large number of ear infections. When he was in K, he had an episode where he choked on a piece of pizza and H had to Heimlich him. He refused to eat for a week after that - a horrible week during which we forced Pediasure down his throat while waiting for an endoscopy appointment. The day before the appointment, he began eating again. A month later, he had a similar episode but that time he had not choked. He had strep. His teacher sent me an article about Dr. Susan Swedos of NIH. Her son developed Obsessive Compulsive Disorder (OCD)-like symptoms after a bout of strep. We realized that our son had had strep during the first choking episode and he began eating again 2 days after we put him on antibiotics (liquid). We filled out paperwork and qualified for testing for the study. The results were that he definitely had PANDAS but that it was not severe enough to require the Gamma Globulin infusion the study was offering. Instead, we were told to give him Amoxicillin at the first sign of strep or Obsessive Compulsive Disorder (OCD).

    When he entered 2nd grade, we informed the school so that they would tell us of strep in any classes. Our daughter was a strep carrier who never became ill. Our ENT read up on PANDAS and told me that some research was showing that removing the tonsils would help so we did that at the end of 2nd grade. It did help but we still kept him on precautionary amoxicillin through middle school.

    He now recognizes when he is feeling strange and will tell us so that we can get him amox. His eyes get red rimmed, he get OCDishand has strange obsessions and fears. Over the years, his fears have included that mothballs will kill him, that he must have a certain toy or game and the like. Now it's that he MUST go fishing. He's come to enjoy it as a hobby lately but when he's PANDA-ish, we almost have to tie him down when it's not time to go due to weather, work, etc.

    It's a strange syndrome.