Sydenham chorea/ARF with a history PANDAS type symptoms?

[gemcitygirl]

Hello, I joined and posted back in November, when my then 4 and half year old son had a severe episode of OCD type behavior and a movement disorder associated with 2 positive rapid strep tests. Before this he had two previous bouts of emotional liability and hyperactivity, I believe these episodes were strep related- but we had no tests done at the time, so I can't be certain.

 

When I took him to an infectious disease doctor in November, he thought this sounded like PANDAS, he sent me a few papers on it and gave me his pager number with instructions to call him again if my son has another episode. Back in late October, I had also made a neurologist appointment for my son, but it was for January. I kept this appointment because while my sons behavior was completely back to normal, his teachers began hounding me about his poor muscle tone. At the beginning of the school year (before the strep) the occupational therapist that works with his class observed my son because he held his writing utensils incorrectly. She said he was perfectly fine and normal, and that this is more typical for boys- nothing to worry about. Post strep episode around December, she observed him again at his teachers request, and suddenly he exhibited fine and gross motor problems that would likely make him qualify for State paid for occupational therapy. We are having him tested BTW.... But anyway, I brought this up as my chief concern with the neuro, I didn't think it had to do with PANDAS. He told me it was sydenham chorea, the spiderbite type bumps he had on his wrist in October were likely subcutaneous nodules caused by ARF. In fact, when I took him to the doctor when we had the first positive rapid strep last fall- I showed him my son's wrist and he told me "that can be a sign of ARF, but don't worry that is very unlikely". I do know that he had strep for a while before he got really sick, because he had complained to me that his neck hurt in the weeks before, but he felt fine. He had no fever or other symptoms until the weekend I took him to the doctor. The OCD behavior started first then there were a few occasions when I saw full blown chorea, once when he was running in front of me after school, he looked like a puppet. His gait looked so wild and strange that I screamed for him to stop, and then I asked him to do it again. He couldn't recreate it, and I had no idea what could have caused it. I told his pediatrician about it, but I was most concerned about his mental health when I insisted that we see a specialist.

 

After all of this, he began improving so much in school these past few months,with his muscle tone and motor skills that everyone suddenly no longer thought my son would qualify for OT. But of course, he got sick again about 3 weeks ago. I had it week before, it was like a very strange stomach virus, I went to the doctor and that is what he called it. My son got it a week later and was sick for 5 days, he was acting fine- just sick. Then he was much better, up playing for a few days, went back to school. When I picked him up from school he was running in the hall and completely wiped out, I noticed he was clumsy at home that day, and by the evening he was an emotional mess. I didn't see any OCD or anything, but I felt like something was going on. SO, I looked in his throat and saw it. I called the ID doctor immediately and he told me to have him tested and the let him know what happens. The rapid strep just barely came back positive, the nurse told me it was negative and was about to throw it away, then she saw the line begin to appear and grow stronger.

 

So the neuro that diagnosed my son with sydenham's, did not tell the ID Doctor, or send a note to him. The neuro did not prescribe prophylaxis, but wanted him to have it before dental work (why?). So here we are again, every time he gets strep he has a reoccurrence- he had a second positive rapid strep 4 days ago. The ID doctor sent him to a cardiologist who ruled out heart involvement- but he said my son has been lucky so far, and one of these times the luck would run out. He sent a note out to all doctors involved that he needs his tonsils out and he must go on long term prophylaxis ASAP.

 

I agree with both of those courses of action. I do believe the neuro is correct this is Sydenham chorea. The cardiologist definitely thought it was rheumatic chorea as well. But PANDAS still concerns me, because of his past blips with possible strep(?) the year before. Can a child have early tremors before ARF? I know he has had repeated episodes of strep since he was 18 months old. My son does not have a tic, or identifiable OCD in his normal state, so I'm not sure if he currently meets the diagnostic criteria for it. But I did see OCD in October and November, the behavior vanished- but the movement disorder, although minor, did not. I've read conflicting studies about tonsillectomy and GAS infections regarding ARF and PANDAS- but it seems this is the reason my son keeps getting infected and then has trouble getting rid of it. Any thoughts on this? Or experiences with prophylaxis and tonsillectomy? I will say that he complained that his throat hurt (there was no behavior) at the end of January and his rapid strep came back negative, so he is not a carrier. I really want to make the right decision on this, and I'm wondering if I should get him with a neuropsychologist now, just in case OCD would become a problem in the future. Thanks for reading this!

[AmySLP]

I'd simply recommend not wasting time and money with all these specialists that are not PANDAS specialists. There are lists by state that will be of help-I'm sure someone can post where to find them or simply post the region you live in and I'm sure people will make suggestions.

 

Just a quick comment on that barely present rapid-Our pediatrician told us that these are like a pregnancy test-any line, no matter how faint is a positive. Just to be sure, insist that all streps that are negative are sent out to be cultured.

[Buster]

Sudden onset OCD is present in about 70% of children with Sydenham chorea. In Swedo's studies in 1994-1998 some children with sudden onset OCD had the episode 3 weeks before Syndenham and some 3 weeks after the movement disorder.

 

Strangely having Sydenham Chorea diagnosis may actually help you in getting treatment. Many believe that Sydenham Chorea is monophasic (and it is in about 70% of cases), and many believe it is self-limiting (which it is for the motor abnormality), however, there are very spread and inconsistent results for the OCD accompanying the SC. van Immerzeel's paper http://www.ncbi.nlm.nih.gov/pubmed/20349351 on the benficial nature of IVIG for SC.

 

There are also many papers from Brazil as SC and SC+OCD are quite a problem still there.

 

Best regards,

 

Buster