Difference between Sydenham's and PANDAS

[OTSMITH]

When my duaghter first became sick, I found PANDAS on the web, and it seemed to fit like a glove. We than got into the children's hospital and they said Sydenham's Chorea (b/c of the "dancing" tounge, milkmaid grip, excessive movement, joint pain etc...) 2nd and 3rd consultations confirmed SC. we spoke w/Dr.C, he seems to think PANDAS b/c of the OCD complications. We have not done the C-study,b/c she is doing rather well now. Her neuro said on a 1 to 10 , he rates her "chorea"a 1 with OCD complications.

 

i was wondering are there any Sydenham's families on this forum and/or what are their experiences? just curious, I know PANDAS and SC are in the same family but different ....J

[peglem]

Just my opinion...

 

I think SC is the high side of a spectrum and PANDAS is just a variant of SC. Information I've seen on SC seems to indicate that it is self limiting- PANDAS seems to be more prone to relapse?

[sf_mom]

In my opinion... RF, SC and Pandas are one disease just different presentation and degrees. If you look up Rheumatic Fever you'll find SC to be one of the symptoms of RF. ALL three have, OCD and tic movements. There are some studies that show that there is heart involvement with individuals that have Strep Triggered - TIC related illnesses. AND, we all know our kids complain of joint pain. I know some kinds considered PANDAS have very high CaM Kinase similar to SC during episode, etc.

 

-Wendy

[KeithandElizabeth]

I really feel that they are related. Our son has mild chorea movements and mild tics with severe OCD.

 

Elizabeth

[Worried_Dad]

I agree that ARF, SC, and PANDAS are all part of a spectrum. Dr. Latimer actually told us the same thing during a phone consult last May. Our son was originally diagnosed with ARF / SC, and that diagnosis stood for about 10 months. When he 1st got sick, he had no recognizable OCD at all; just severe joint pain / arthralgia, headaches, muscle weakness, difficulty walking, and seizure-like episodes where all his limbs twitched and jerked uncontrollably. These movements gradually became more tic-like, but no Tourette's style vocal tic. He did definitely have the classic "emotional lability" described for SC.

 

Based on his elevated ASO and other symptoms, the docs we saw acknowledged that he met the "modified Jones criteria" for an ARF / SC diagnosis... even if most still didn't really accept it. We spent our online research time back then on the wemove.org SC forum. Our doc told us that SC was "self-limited" and would eventually just go away, so we waited and hoped. Then our DAN doc came back from a conference and said he thought our son fit a PANDAS diagnosis better than SC.

 

When our son had his major exacerbation in Summer 2008, he exploded with classic PANDAS symptoms, and there was little doubt at that point... although Dr. L still believes he fell somewhere between SC and PANDAS on the "spectrum." Luckily, no sign of rheumatic heart disease!

[Buster]

We agree too that PANDAS and SC are part of a spectrum. When we hospitalized our daughter for her symptoms, we ran all sorts of test. Our daughter did present with elonged QT interval on her initial EKG and was left on multi-lead EKG each night for 5 days to monitor for events. The conclusion was that the elongated QT interval and significantly low blood pressure were due more to malnutrition rather than likely ARF. She had verbal tic, fine motor tremor, and debilitating OCD, but did not have the chorea or milk-maids grip typically associated with SC.

 

She did culture positive for GABHS and was started on Augmentin that produced noticable improvement within 24 hours (albeit not complete remission). About 6 weeks later, however, she got re-exposed to strep again and her symtpoms escalated along with a significant movement disorder. We spent a significant about of time asking folks to view videos and let us know if the complex motor abnomality was an OCD compulsion (psychiatrist), mild chorea (pediatrician), a tic (neurologist) or choreiform movements.

 

So far no heart murmurs or other indication of heart difficulties. We've read the studies by Snider that seems to indicate that PANDAS doesn't have the ARF heart issues.

 

Regards,

 

Buster

[EAMom]

Does anyone know if SC kids react to non-strep illnesses like PANDAS kids?

[faith]

could someone describe what a "choreaform" movement would be like? I know the piano fingers is one of them, I don't beleive we have that. but what else would be considered that type of movement as opposed to a tic?

 

Thanks

Faith

[peglem]

could someone describe what a "choreaform" movement would be like? I know the piano fingers is one of them, I don't beleive we have that. but what else would be considered that type of movement as opposed to a tic?

 

Thanks

Faith

 

Good question, Faith! My daughter has all sorts of strange, repetitive movements that seem too complicated to be tics- she has a manic quality about her when she does some of them. Although, I think she has tics as well. I can't get her to hold her hands out to see if she has the piano fingers. She has this weird, quirky "dance" thing that she does, I call it her windmill dance because of her arm movements, but she is quite manic during that and doesn't seem to have control over the movements or a choice about whether or not to do the dance. I've looked up movie clips of chorea online, but there aren't very many and they have a very different quality from what I see my daughter doing. Those are more writhing, and hers are very jerky. I've had doctors tell me its not chorea...but they can't tell me what it is, either.

[mom md]

Latimer said my son was a "toss-up" between SC and PANDAS after she met him after improvement on azith for three months. He still had a lot of chorea, milk-maids grip, darting tongue, etc. Back before the antibiotics he had full chorea movements. He did the piano playing and the dancing. The best way to describe it was like break-dancing. The movements were very fluid. Very creepy. After antibiotics they became shoulder rolls, and finger rolls. He also continued to have a lot of chorea in his fascial expressions. His Cunningham value was 201% and in the SC range after three months of treatment with azith. Had we tested it in the full flare my guess is we would have been even higher. I think they are all on a spectrum of disease. (As an obstetrician I think of it like pregnancy induced hypertension developing into preeclampsia. If you let it go untreated long enough if may progress as ours did).

[Buster]

There's a fair description of Choreiform movements http://books.google.com/books?id=TMupBGlpk...gue&f=false

 

When studying choreiform movements the literature tended to refer to such movements as grimaces, shoulder movements, irregular breathing. They distinguished these from tics in that tics tended to be more regular and prescriptive. Clumsiness was often associated with choreiform movements due to an inability to sustain pressure from all fingers.

 

Often choreiform movements finished in some other voluntary action -- more like covering up the event. So an arm twitch might end up in smoothing back hair.

 

In our case, our daughter had a fine motor tremor, a complex measurement ritual, irregular breathing with a soft vocal tic, and an odd arm movement that resulted in needing to touch her chin with the back of her hand.

 

We did not observe the milkmaid grip or the piano playing behavior during the height of her illness.

 

Regards,

 

Buster

[OTSMITH]

thanks for all the great replys.

 

EAMOM, I can only speak from our experience, My "SC" daughter maintains on Pecilan Prophylatics, and she has been exposed to strep, and shows no major regression, she has been exposed to hand foot mouth and showed no major regression. But she had H1N1 and had MAJOR regression. She also seems to regress with just mild colds etc...Like other families have spoke about it very much has a "saw tooth" pattern, which is very frustrating for her little 4 year old world.

[sf_mom]

Since its looking like my kids were exposed RF......... I was looking into Rheumatic Fever a little further and found this interesting with regards to the M18 and M1 strain of Streptococcus Bacteria.

 

 

There are more than a hundred varieties of group A Streptococcus, each of which is distinguished by the type of ‘M’ protein it has. Musser’s group sequenced a type called M18. Last year, Vincent A. Fischetti, of The Rockefeller University in New York, and colleagues sequenced an M1 strain, also known as Streptococcus pyogenes.

 

Musser says his team has now isolated and purified most of the surface proteins that are likely to mediate interactions between the bacteria and host. Surface proteins can be recognized by DNA patterns in their genes and are potential vaccine targets.

 

Two M18 proteins in particular caught the attention of the researchers. They look like another M18 protein, called SPE C, which triggers a massive immune reaction in host cells and leads to streptococcal toxic shock syndrome. Schlievert’s laboratory investigates SPE C and is now studying the newly identified proteins. These types of protein are called superantigens.

 

“Superantigens are interesting molecules because they allow the bacterium to survive in the host for an extended period of time,” says Schlievert. His laboratory, in collaboration with Musser’s, will knock out the proteins in M18 strains and test the virulence of modified strains in rabbits or mice to see whether something relevant can be learned about the mechanism of strep infection in the heart.

 

The researchers also constructed DNA microarrays containing genes from both the M18 strain and the M1 strain. The arrays were used to compare the genomes of 36 M18 strains. The samples included isolates taken from patients at the Great Lakes Naval Training Center during World War II and the Lowry Air Force Base in Colorado in 1968. Rheumatic fever outbreaks tend to occur in environments where there is crowding, such as military barracks, schools, and large households, where bacteria and other infectious agents spread easily.

 

 

For entire article: http://www.genomenewsnetwork.org/articles/...c_bacterium.php

 

This goes back to MY THEORY that we are dealing with a strain of Streptococcus that is difficult to eradicate!

[PKM]

My son (who was diagnosed with SC in Jan 09) continues to have trouble with anything that challenges his immune system (colds, flus etc.). Sometimes these setbacks have been pretty severe and sometimes more mild. I would have to say, however, that as the months go by, the setbacks are less severe "overall".

 

 

Does anyone know if SC kids react to non-strep illnesses like PANDAS kids?