Another newby

[twobit]

Hello all,

Usually go to the TS side of this site, but I am thinking that maybe my son has PANDAS. Almost an exact year ago, my son had abrupt onset of motor (touching face) and vocal tics (grunts) three days after he got off antibiotics for strep. His strep and anti dnase B were all very low when we took him to a pediatrician and neurologist in the week following. After a few weeks his symptoms went away to almost nothing. In fact, I think the only people who may have noticed were his Mom and I because the vocal tics went completely away. He stayed like this for most of the year and we assumed that any transient flare-ups were due to bad diet. Two weeks ago, he started stuttering a bit which had me concerned, then a week ago while on vacation, I took him to an acute care clinic because he was coughing, sneezing and couldnt breath through his nose at night, so he was getting almost no sleep. Doc put him on anti-biotics because his throat was swollen with pustules. No strep test was ordered because it wasnt a hospital. My daughter and I went on it as well.

 

So here are my questions:

Most PANDAS kids seem to improve after their kids go on anti-biotics, but mine doesn't. It seems as if only time helps. Of course I haven't tried anything like a steroid burst, IVIG, etc. Have others found that to be the same with their kids? Also - if there is inflammation of the brain causing this, what type of long term damage can each episode cause? Cumulative?

 

I guess my bottom line is that if these remain purely motor tics with no mood swings, OCD, etc, and decrease to almost nothing in a few weeks, I'm wondering how much I should be willing to put my son through to find out the cause? The long term damage question will steer my course.

 

Thanks for any help.

[EAMom]

I would be vigalant about getting throat cultures in the future...if your son is ill (even if not classic "sore throat" symptoms) or if there is an increase in tics (or other behavior change.) Also, be aware that many PANDAS kids have behavior change or tics as their only symptom of strep. Also, some kids will culture neg. but may have strep hidding out in their sinuses or elsewhere. Also, a percentage of kids with strep (or PANDAS) will not have a rise in either ASO or anti-dnase B .

 

From what you have described, it is difficult to say if your son is PANDAS at this point. Keeping tabs on symptoms, doing cultures etc. may help you figure out a pattern. Also, pay atttention to strep in the enviroment (strep notices from school, friends, etc.). If your son starts up with tics in the future and he is negative consider culturing family members.

 

Most/many PANDAS kids have symptoms other than just tics...emotional lability, urinary issues, anxiety, ocd.

 

Two weeks ago, he started stuttering a bit which had me concerned, then a week ago while on vacation, I took him to an acute care clinic because he was coughing, sneezing and couldnt breath through his nose at night, so he was getting almost no sleep. Doc put him on anti-biotics because his throat was swollen with pustules. No strep test was ordered because it wasnt a hospital. My daughter and I went on it as well.

What antibiotic is your son on? Are the pustules gone? Does he still have the stuttering? If so I would recommend a follow-up strep test in a couple of weeks to see if the infection actually cleared. Do the 72 hour culture if the rapid is neg.

 

Usually go to the TS side of this site, but I am thinking that maybe my son has PANDAS. Almost an exact year ago, my son had abrupt onset of motor (touching face) and vocal tics (grunts) three days after he got off antibiotics for strep.

 

For my dd tics are usually the last symptom to show up and the last to leave (several weeks after strep exposure). Her tics wouldn't leave as soon as the strep was treated. Other symptoms (mood, handwriting, ocd) will show up before tics and go away sooner.