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I am new to this site and thank peglem for putting me in touch. I read Dr. T's post and replies with great interest. I must be honest and say that being somewhat new to it all alot of what was said in these posts are a little over my head. However what I do understand is that there are a variety of tests that if not point in the direction of PANDAS can at least eliminate other potential disorders. I am concerned because my now 8 year old son was diagnosed 18 months ago with Sydenhams chorea and virtually none of these tests were done.

Although he did not present with the usual writhing motions of severe SC cases; because of previous exposure to Strep and fairly severe tics, the neuro was convinced this was what it was. He was put on penicillin for 10 days 4X daily and is now on 500mgBID. Over the first year we saw a great deal of improvement but in the last 6/7 months he has unfortunately gone down hill again, his tics are as bad as they ever were although appear to be more localized in the neck, face, eyes. rather than whole body but what has become really bad that was not particulary evident in the first year is the ADHD like behaviour, inattention,silliness, emotionally liability. I realize this disease, like Pandas, ebbs and wanes but is it possible to regress after 18 months to a state worse than he started and for such a long period of time (5-6 months)? I worry he is not getting the appropriate medication especially if the diagnosis is incorrect.

Reading all these posts makes me feel that he possibly has PANDAS rather than SC although the distinction appears to be virtually negligible. It does however matter if there are alternate forms of treatment that can help him.

After reading Dr. T's post I am amazed to see that virtually none of these tests were carried out ( we live in the Middle East- so no wonder). An ASOT titer was done 6 months after the initial episode and found nothing, a cardiac echo and MRI all showing nothing. I am now starting to doubt the SC diagnosis. My question to you is; Is it too late to try to have any of these tests done? Thankfully, We are moving to the U.S. in February and I am not sure whether there are other options to be pursued.

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Welcome.

 

Even though your child is on meds, have you taken him for a strep test once you started to see dramatic backsliding? Also, some PANDAS kids will react to exposure only. So, family members should rule out strep even if they do not show any symptoms. Don't wait until Feb to do this. It's simple enough to go in and get everyone swabbed. Have you discussed changing antibiotics with your doctor?

 

Where in the US are you moving to?

 

As for things being over your head, I've been living w/ PANDAS for awhile and been on this forum for awhile and I still get confused with tests and in depth conversations about the immune system. I think of myself as better with dissecting behaviors rather than figuring out the medical aspect. So you're not alone in that:)

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As for diagnoses, SC is much, much more recognized by Dr.s and hence you are more likely to get medical help. BUT, you are correct in saying they are very similar..... I happen to believe that the auto-immune process is very similar in PANDAS, SC and Rheumatic Fever.

 

It seems as if your son's immune system has given up and either he can no longer fight the original strep infection in his body or he was re-exposed to strep. I recommend you consult with one of the more versed PANDAS Dr. listed on this forum to map out potential treatment for your son. AND, like Vickie suggested check the entire family for strep and perhaps switch antibiotics.

 

It is not too late to have additional test run and recommend testing his CaM Kinase to determine if he falls in the SC range in conjunction with IgG Subclasses (typically low normal or low in PANDAs), Strep Pneumococcal Antibody Titers (typically deficiencies) and CBC panel.

 

With the PROPER help your son will get better.

 

-Wendy

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Hi, Rosalyn:

 

Our son, too, was originally diagnosed with acute rheumatic fever / Sydenham's chorea in Summer 2007. Found some excellent info on the wemove.org site, in case you haven't seen it.

 

http://wemove.org/syd/pediatric/

 

Per this info, SC is considered "self-limited" and we were advised that it would resolve itself within 3 months to 2 years (average about 9 months). So we spent a long, long time just waiting for the miracle to happen. Unfortunately, our son did not get back to baseline. And - shortly after prophylactic antibiotics were discontinued - he had a major exacerbation, worse by far than the original, with emergence of the classic PANDAS symptoms like extreme overnight OCD, rages, crying jags, suicidal talk, anorexia, urinary frequency, etc.

 

So I can understand your concern. To many of us, SC and PANDAS are just part of a common spectrum of post-strep neuropsychiatric disorders that (as you mentioned) overlap considerably. Our son's original symptoms - "seizure-like" episodes where his limbs jerked uncontrollably, polyarthritis, headache, muscle weakness, difficulty walking - seemed to fit SC better. But after his major exacerbation in Summer 2008, the symptoms definitely fit PANDAS better. The line between them seems pretty blurry and kids seem to shift along the continuum with subsequent strep exposures.

 

If we could go back in time, we would have pursued other diagnosis and treatment options more aggressively early on instead of waiting for the SC to "resolve itself." I'd definitely recommend hooking up with one of the PANDAS clinician gurus (Dr. K, Dr. L, Dr. T) mentioned throughout this site once you're back stateside.

 

Best of luck!

 

BTW: You'll see on the wemove.org site that the SC literature mentions that SC "may recur, usually within approximately 2 years of the initial occurrence." Makes me wonder if this recurring SC pattern is really just PANDAS before PANDAS was formally identified?

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Reading all these posts makes me feel that he possibly has PANDAS rather than SC although the distinction appears to be virtually negligible. It does however matter if there are alternate forms of treatment that can help him.

After reading Dr. T's post I am amazed to see that virtually none of these tests were carried out ( we live in the Middle East- so no wonder). An ASOT titer was done 6 months after the initial episode and found nothing, a cardiac echo and MRI all showing nothing. I am now starting to doubt the SC diagnosis. My question to you is; Is it too late to try to have any of these tests done? Thankfully, We are moving to the U.S. in February and I am not sure whether there are other options to be pursued.

 

So the good news is that the echo and MRI were clear -- that largely rules out ARF, ADEM, and MS. Does your son present with OCD symptoms too (or just the tics)?

 

Tests that would probably be helpful would be differential WBC (check for elevated monocytes and eosinophils to rule out other neuropathy), flow cytometry (check for CD4/CD8 ratios and check for infection) and the IgG subclasses (rule out immune deficiency). When lab reopens, worthwhile to see if your son can participate in the Cunningham research trial at Univ of Oklahoma.

 

Wishing you the best,

 

Buster

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I am so glad you have found this forum and glad you will be moving back soon. My son also was diagnosed with SC/PANDAS. I definitely think they are all part of a spectrum. I do think that it is often hard to figure out. I do think Cunningham's research test can help differentiate. My son was clearly SC and after 3 months of antibiotics looked a little more like PANDAS/SC. After his most recent relapse he looks more like PANDAS. If there is not a specialist near you I o think it is worth driving or flying to see one. Even if you end up getted treated in your town, the specialist can help guide your local doctors. We are getting ready to get treated locally with IVIG but Dr. Latimer is helping guide the doctors here in Charlotte.

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But how do you know the difference between the 2 ?How can you determine if its SC or Pandas if not for the cardiac issues?

Melanie

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I still struggle with that issue and do not know the answer. Carter's camkinase was 201% which is in the SC range...that was after his chorea was much less and after three months of azithromycin. My guess is had we seen Latimer when he had full chorea she would have definitely called him SC and his Cunningham numbers would have been even higher before the antibiotics. IStill to this day though if you have him stand against a wall and close his eyes with his hands in the air his fingers "play" a piano. Back before the antibiotics he was "breakdancing" around the house and playing pianos that were not there. When I watch you tube videos of SC it is exactly what he was doing.

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It sounds as if our sons our twins. Same time , same symptoms. Do you think it is possible that it may start off as one and merely transition to the other?

 

The tics my son have at the moment are mostly head, and twisting of the neck and his eyes move sideways not rolling but more a forced movement. This results in him getting alot of what I assume are stress headaches due to the constant movement.

When I think about what a confident , really clever little fellow he is and for him to have changed so much it breaks my heart. I worry so much about his future, and now with the move to Fort Lauderdale I worry about him making new friends.

 

As soon as we get there I am going to actively pursue help for him. I am sure there must be someone in the Fort Lauderdale area or close by.

 

Although I have seen references to all the Dr.'s you mentioned I am not sure where to get a hold of them. I see there is a link to the docs on this forum and will have a look through that.

 

I really want to thank everyone that has responde to me. It is a great support having others out there who understand.

 

 

Hi, Rosalyn:

 

Our son, too, was originally diagnosed with acute rheumatic fever / Sydenham's chorea in Summer 2007. Found some excellent info on the wemove.org site, in case you haven't seen it.

 

http://wemove.org/syd/pediatric/

 

Per this info, SC is considered "self-limited" and we were advised that it would resolve itself within 3 months to 2 years (average about 9 months). So we spent a long, long time just waiting for the miracle to happen. Unfortunately, our son did not get back to baseline. And - shortly after prophylactic antibiotics were discontinued - he had a major exacerbation, worse by far than the original, with emergence of the classic PANDAS symptoms like extreme overnight OCD, rages, crying jags, suicidal talk, anorexia, urinary frequency, etc.

 

So I can understand your concern. To many of us, SC and PANDAS are just part of a common spectrum of post-strep neuropsychiatric disorders that (as you mentioned) overlap considerably. Our son's original symptoms - "seizure-like" episodes where his limbs jerked uncontrollably, polyarthritis, headache, muscle weakness, difficulty walking - seemed to fit SC better. But after his major exacerbation in Summer 2008, the symptoms definitely fit PANDAS better. The line between them seems pretty blurry and kids seem to shift along the continuum with subsequent strep exposures.

 

If we could go back in time, we would have pursued other diagnosis and treatment options more aggressively early on instead of waiting for the SC to "resolve itself." I'd definitely recommend hooking up with one of the PANDAS clinician gurus (Dr. K, Dr. L, Dr. T) mentioned throughout this site once you're back stateside.

 

Best of luck!

 

BTW: You'll see on the wemove.org site that the SC literature mentions that SC "may recur, usually within approximately 2 years of the initial occurrence." Makes me wonder if this recurring SC pattern is really just PANDAS before PANDAS was formally identified?

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How does one get to participate in this research trial? Would we need to be in Oklahoma? Is there somewhere I could find out about it to see what is involved?

 

I will definitely have all these tests done once we get to Florida, at the very least they will alleviate my constant fear that he has been misdiagnosed.

 

Reading all these posts makes me feel that he possibly has PANDAS rather than SC although the distinction appears to be virtually negligible. It does however matter if there are alternate forms of treatment that can help him.

After reading Dr. T's post I am amazed to see that virtually none of these tests were carried out ( we live in the Middle East- so no wonder). An ASOT titer was done 6 months after the initial episode and found nothing, a cardiac echo and MRI all showing nothing. I am now starting to doubt the SC diagnosis. My question to you is; Is it too late to try to have any of these tests done? Thankfully, We are moving to the U.S. in February and I am not sure whether there are other options to be pursued.

 

So the good news is that the echo and MRI were clear -- that largely rules out ARF, ADEM, and MS. Does your son present with OCD symptoms too (or just the tics)?

 

Tests that would probably be helpful would be differential WBC (check for elevated monocytes and eosinophils to rule out other neuropathy), flow cytometry (check for CD4/CD8 ratios and check for infection) and the IgG subclasses (rule out immune deficiency). When lab reopens, worthwhile to see if your son can participate in the Cunningham research trial at Univ of Oklahoma.

 

Wishing you the best,

 

Buster

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Ok 2 questions I now have about SC Whats the difference between the treatments? Both use antibiotics yes?And do you have these utube videos.Danny does this foot thing.Ive had 1 psyc and 3 neurologists look at it and no one knows what it is just that its a tic!Thats the 1 body tic he really shows.He has verbal ones too.I have searched on utube but havent found this one .

Thanks

melanie

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Ok 2 questions I now have about SC Whats the difference between the treatments? Both use antibiotics yes?And do you have these utube videos.Danny does this foot thing.Ive had 1 psyc and 3 neurologists look at it and no one knows what it is just that its a tic!Thats the 1 body tic he really shows.He has verbal ones too.I have searched on utube but havent found this one .

Thanks

melanie

 

I honestly don't know what the difference is and when I asked Tom's neuro he jus said "that's a good question" and "really there is no clear cut distinction" .... What I do know is that if it is SC they must have their heart checked because apparently there can be damage to heart involved. Thakfully in our case this was fine. The neuro said because of the types of movements he sees in Tom he is more inclinded to think it's SC. This is the problem I have. With SC there is supposed to be an end in sight. Basically I was told a few months to 2 years max and we should see almost total improvement with it only rearing its ugly head in the future at times of very high stress situations or quite severe illnesses. Over this recovery period of max 2 years although it would ebb and wane what we should see is episodes lasting for a shorter period of time and the length of time between episodes getting longer. We did see this the first year but 14 months into it, it all started again with a vengence, and with basically no let up for the past 6 months. Not only that we are now seeing a type of vocal tic, not quite grunting but just a small burst of sound that comes from the back of his throat as well as added ADHD type behaviours. So much for it all disappearing. I feel guilty because I have done what I was told put him on penicillin V 250mg BID and sat back and waited for it to go. Now after reading this forum I feel there could have been so much more that I could do. None of the suggested tests were done - In fact I was told by the docs here in the middle east that "SC does not exist here what do those western dr's think we re a third world country?"

Obviously a stigma attached to the disorder and so no one here is on board. When we get to the states this will be my first priority.

I do find it interesting however that many are put on augmentin. I was told by my neuro ( UK neuro) that augmentin is broad spectrum where as penicillin V specifically targets strep with less side effects. Is there a difference?

 

Just as an aside my son also has the strangest tic - he tics towards the light/sun . When ever he has his head/eye tic they always move in the direction of the strongest light or the sun if outside. I asked the Doc about this and they just said "it's one of those things"

 

Wishing you all the best

Roz

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How does one get to participate in this research trial? Would we need to be in Oklahoma? Is there somewhere I could find out about it to see what is involved?

 

I will definitely have all these tests done once we get to Florida, at the very least they will alleviate my constant fear that he has been misdiagnosed.

 

The research trial is remote where 10-20ml of blood is drawn and spun down to serum sent overnight to Oklahoma. Their lab is currently closed, but you can contact them from the info at http://www.ouhsc.edu/mi/faculty/cunningham.html . I think the research trial is still accepting new subjects. Please remember that this is a research trial so the accuracy and senstivity (and interpretation) are not really known.

 

Regards,

 

Buster

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