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Any Fellow Canadians? Does this sound like PANDAS?


PKM
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Hi all.

 

I am new here and I believe my 8 year old son might have PANDAS. He had an untreated strep infection at the end of Nov/beginning of December. Four weeks later he had a very sudden/rapid explosion of eye tics. These went away after treatment with antibiotics (he had elevated strep titer). He then suffered a very severe viral infection. Three days before the viral infection we noticed another sudden onset of tics - he then fell ill. He even had a period of time when he could not even walk. He definitely developed chorea at this point (and diagnosed with Sydenham's chorea). Once again the chorea and tics went away. He got sick again (viral) in mid March. Once again movements (combination of tics and chorea) started a few days before it was evident he had a virus and continued for about 4 weeks afterwards. He got sick in May - same thing happened again (combination of chorea and tics). He got sick again last week and this time he did not start movements until he actually had a fever. This time we have not seen chorea - only tics. We are waiting to see if they go away.

 

He was put on prophylactic antibiotics back in March and has been on them ever since (Penicillin VK - 300mg 2x day). We are of course hoping that the strep antibodies are starting to go away and that is why this last viral infection didn't cause such a severe return of movements.

 

Anyone with any thoughts??

 

Also does anyone know of any physicians in Canada who actually believe PANDAS exists? I can't seem to find much of a Canadian community for PANDAS.

 

Any thoughts/input would be greatly appreciated.

 

Thanks

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Hi PKM...

 

Some thoughts...

Good question, PANDAS or sydenham's chorea? If you are able to run blood through Madeleine Cunningham (see worried dad's post) that might help you clear some of the confusion since SC kids tend to have higher CaM kinase II than PANDAS kids. Of course there is a "grey zone" but I do think it might help.

 

re abs: lots of PANDAS kids are on something stronger than pen. Azith. gets intracellular strep and is also anti-inflammatory/immune-modulating...so that is a popular one. My dd (55 pounds) is on 250mg/day (has been for over a year). Her pediatric immunlogist felt this was a safe dose for her for years. It was the 4th antibiotic we tried and the only one which really helped.

 

You could also start e-mailing around...Dr. K in Chicago, Sue Swedo at NIMH, Dr. Latimer in DC, Dr. Leckman at Yale to see if they have any recommendations for Canadian docs.

 

What part of Canada are you in?

 

Maybe Worried Dad (I don't know how often he is checking the forum) will chime in. His son also originally had a SC diagnosis...later he developed ocd symptoms as well and the diagnosis was eventually changed to PANDAS.

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Hi, PKM:

 

Yeah, my son was originally diagnosed (Summer of 07) with ARF and SC because his symptoms started with polyarthritis, pain, muscle weakness, and then these "seizure-like" episodes where his limbs would twitch and jerk wildly for 30-90 minutes. Initially, no OCD at all, but the rest of the symptoms (emotional lability, separation anxiety, etc.) overlap a lot between SC and PANDAS.

 

In Spring of 08, our local diagnosing doc attended a conference and came back to tell us that he thought our son was more PANDAS than SC. Our son's movements were episodic, and I guess classic SC movements are continuous. Then that summer, we had the overnight explosion of OCD contamination fears along with anorexia, urinary frequency, wildly dilated pupils, etc.; the classic PANDAS stuff.

 

We had a phone consult with Dr. Latimer from D.C. area (you'll see many other posts about her - she's excellent), and she also wasn't sure whether our son's illness fit best under SC or PANDAS. She mentioned that, as far as she's concerned, SC and PANDAS are just parts of the same spectrum of disorders. Makes sense to us: both are neuropsychiatric, both believed to be caused by autoimmune response that attacks basal ganglia, and many of their symptoms overlap.

 

Hope that helps. And best of luck finding a nearby doc willing and able to help - that's more than half the battle!

 

 

Hi PKM...

 

Some thoughts...

Good question, PANDAS or sydenham's chorea? If you are able to run blood through Madeleine Cunningham (see worried dad's post) that might help you clear some of the confusion since SC kids tend to have higher CaM kinase II than PANDAS kids. Of course there is a "grey zone" but I do think it might help.

 

re abs: lots of PANDAS kids are on something stronger than pen. Azith. gets intracellular strep and is also anti-inflammatory/immune-modulating...so that is a popular one. My dd (55 pounds) is on 250mg/day (has been for over a year). Her pediatric immunlogist felt this was a safe dose for her for years. It was the 4th antibiotic we tried and the only one which really helped.

 

You could also start e-mailing around...Dr. K in Chicago, Sue Swedo at NIMH, Dr. Latimer in DC, Dr. Leckman at Yale to see if they have any recommendations for Canadian docs.

 

What part of Canada are you in?

 

Maybe Worried Dad (I don't know how often he is checking the forum) will chime in. His son also originally had a SC diagnosis...later he developed ocd symptoms as well and the diagnosis was eventually changed to PANDAS.

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I am not sure about running blood out of the country but maybe I can have the CaM kinase checked here with our doctor. We have an appointment next week and I will also try to talk about the choice of abs at this time. I am not convinced that this doc will really explore the whole PANDAS diagnosis. He mentioned it once earlier on but when we last spoke he said he had recently read an article doubting the very existence of PANDAS......hmmmm.

 

I already emailed Dr.K and he knew of no one in Canada - but I will try the other docs you mentioned as well - maybe I will have some success (thanks for the list).

 

Do kids need to have other symptoms besides movement to fit into the PANDAS spectrum? When he was very ill he was somewhat moody/irritable......but nothing too bad really. He also now complains of sore knees and ankles sometimes. Academically and socially he has no issues and no hints of any OCD, ADD or ADHD.

 

Really his symptoms are thus far all movement related. He has had chorea and tics and some movements that have been very dystonic in nature (held for at least a 90secs). When things were at their worst - every muscle in his body was affected and movements virtually continuous (eyes, mouth-jaw, neck, shoulders, arms, wrists, fingers, abdomen, legs, ankles, and even toes). He was a moving boy!

 

I am wondering if you know the answer to this question - If the antibodies eventually go away for SC why do they seem to stick around for PANDAS kids? Are some bodies just better at ridding themselves of bad antibodies than others?

 

We live in Winnipeg, Manitoba (right the in the middle of Canada and close to Grand Forks, Fargo, and about 8 hours from Minneapolis).

 

Thanks for your interest and help - you seem to know a lot about PANDAS!

 

Hi PKM...

 

Some thoughts...

Good question, PANDAS or sydenham's chorea? If you are able to run blood through Madeleine Cunningham (see worried dad's post) that might help you clear some of the confusion since SC kids tend to have higher CaM kinase II than PANDAS kids. Of course there is a "grey zone" but I do think it might help.

 

re abs: lots of PANDAS kids are on something stronger than pen. Azith. gets intracellular strep and is also anti-inflammatory/immune-modulating...so that is a popular one. My dd (55 pounds) is on 250mg/day (has been for over a year). Her pediatric immunlogist felt this was a safe dose for her for years. It was the 4th antibiotic we tried and the only one which really helped.

 

You could also start e-mailing around...Dr. K in Chicago, Sue Swedo at NIMH, Dr. Latimer in DC, Dr. Leckman at Yale to see if they have any recommendations for Canadian docs.

 

What part of Canada are you in?

 

Maybe Worried Dad (I don't know how often he is checking the forum) will chime in. His son also originally had a SC diagnosis...later he developed ocd symptoms as well and the diagnosis was eventually changed to PANDAS.

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Your story scares me a little for the future! I will have to read more of your posts. Was your son already on abs before he had the sudden onset of OCD? Was it caused by another strep infection? Your son's movements do not sound quite the same as my boy's but I do think every case presents itself very differently. How many of those movement episodes would he have in a day? Do they still continue or have they gone away?

 

Thanks for your input. Much appreciated.

 

Hi, PKM:

 

Yeah, my son was originally diagnosed (Summer of 07) with ARF and SC because his symptoms started with polyarthritis, pain, muscle weakness, and then these "seizure-like" episodes where his limbs would twitch and jerk wildly for 30-90 minutes. Initially, no OCD at all, but the rest of the symptoms (emotional lability, separation anxiety, etc.) overlap a lot between SC and PANDAS.

 

In Spring of 08, our local diagnosing doc attended a conference and came back to tell us that he thought our son was more PANDAS than SC. Our son's movements were episodic, and I guess classic SC movements are continuous. Then that summer, we had the overnight explosion of OCD contamination fears along with anorexia, urinary frequency, wildly dilated pupils, etc.; the classic PANDAS stuff.

 

We had a phone consult with Dr. Latimer from D.C. area (you'll see many other posts about her - she's excellent), and she also wasn't sure whether our son's illness fit best under SC or PANDAS. She mentioned that, as far as she's concerned, SC and PANDAS are just parts of the same spectrum of disorders. Makes sense to us: both are neuropsychiatric, both believed to be caused by autoimmune response that attacks basal ganglia, and many of their symptoms overlap.

 

Hope that helps. And best of luck finding a nearby doc willing and able to help - that's more than half the battle!

 

 

Hi PKM...

 

Some thoughts...

Good question, PANDAS or sydenham's chorea? If you are able to run blood through Madeleine Cunningham (see worried dad's post) that might help you clear some of the confusion since SC kids tend to have higher CaM kinase II than PANDAS kids. Of course there is a "grey zone" but I do think it might help.

 

re abs: lots of PANDAS kids are on something stronger than pen. Azith. gets intracellular strep and is also anti-inflammatory/immune-modulating...so that is a popular one. My dd (55 pounds) is on 250mg/day (has been for over a year). Her pediatric immunlogist felt this was a safe dose for her for years. It was the 4th antibiotic we tried and the only one which really helped.

 

You could also start e-mailing around...Dr. K in Chicago, Sue Swedo at NIMH, Dr. Latimer in DC, Dr. Leckman at Yale to see if they have any recommendations for Canadian docs.

 

What part of Canada are you in?

 

Maybe Worried Dad (I don't know how often he is checking the forum) will chime in. His son also originally had a SC diagnosis...later he developed ocd symptoms as well and the diagnosis was eventually changed to PANDAS.

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Our dd6 never presented with any movement symptoms. Major symptoms included leg & knee pain (which has remained), moody, irritable, severe anxiety and fatigue. We compared her handwriting prior to her most recent strep exposure to her handwriting during the worst episode and saw a big decline in her ability. If we had not compared actual samples, I think we would have missed the decline in ability.

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Dr. Madeleine Cunningham (see http://www.latitudes.org/forums/index.php?showtopic=4834 ) of the Univ. of Oklahoma is the only one running the CAM kinase ll / anti-neural antibody levels on PANDAS (or possibly SC) kids. The test isn't commercially available :) and I would really surpised if your doc has even heard of the tests. Dr. Cunningham is doing the tests as part of a research study.

 

Have you been able to find a doc knowledgeable in Sydenham's chorea? That might be a start.

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I would recommend getting the CAM kinase II lab done through Dr. C lab. I do not think getting it done elsewhere would work and the results may not be valid. I would call her lab and talk to someone. They are very accessible. Dr. Cunningham will even e-mail you back herself. I am sure they can accept blood from another country. Also, I think if left untreated (with IVIG or plasma exchange) SC may resolve in a few months but also may last for for several years and result in permanent movement and behavioral damage. As you can see it is not the step now causing the symptoms but the antibodies to the strep in the blood. The only way to clear those is IVIG or plasma exchange. Any stress (including vaccines, a viral infection, and in my son's case even anxiety) can cause a flare. It does sound like PANDAS but at the SC level.

iIknow this is overwhelming but there is a treatment and we have been making great strides to get this reconized as a disease. They have even recently started doing IVIG for this at Stanford. As Dr.Cunningham said at a recent lecture...these patients are coming out of the woodwork. It is unbelievable.

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Hi

 

I'm worried because we are in Canada. There does not seem to be much of a community interested in PANDAS in this country. I too am feeling that it is PANDAS but my son doesn't seem to be among the worst of the cases out there. I am worried that if he doesn't get PEX or IVIG that he will only get worse. I would really like him to get treatment before that happens. So far he has only had movements (chorea, tics, and even some very "dystonic" like movements that have been held for 90+ secs). When he first fell ill he was a little extra grumpy but that soon passed. At its very worst, there was a day when his legs would not work at all (he kept rolling forward on his toes and falling to the floor - he was found to have an elevated CPK on this day) but that did eventually resolve itself. He also had a period of time where every muscle group was affected (eyes, jaw, mouth, neck, shoulders, arms, wrists, fingers, trunk, legs, ankles, and toes). He has also always had an overactive immune system (every new tooth meant a fever of at least 103 - and fevers with flus etc. have very often been at the 105 level).

 

However - aside from the movements (and occasional knee and ankle pain) - he has not shown any other signs - no OCD, ADD, ADHD, separation anxiety etc. I'm just worried about trying to find someone here to help us. We have an appointment on Thurs. with his ped. but I am not holding my breath. He did mention PANDAS once before but when we last spoke he told me that he had just read an article that doubted the very existence of PANDAS. Moreover, you can't get into see any specialists here without a referral. It takes a year to see a neurologist and the chances of getting one who believes in PANDAS is probably pretty rare (there are only 3 ped neurologists in the city). I phoned the Tourette's clinic here but they don't believe in PANDAS.

 

I emailed Dr. Cunningham on Fri and I hope I hear back from her. Do you know why the antibodies seem to go away for many SC patients but stick around for so many others (PANDAS patients included)??

 

Thanks for your time and interest.

Much appreciated.

 

I would recommend getting the CAM kinase II lab done through Dr. C lab. I do not think getting it done elsewhere would work and the results may not be valid. I would call her lab and talk to someone. They are very accessible. Dr. Cunningham will even e-mail you back herself. I am sure they can accept blood from another country. Also, I think if left untreated (with IVIG or plasma exchange) SC may resolve in a few months but also may last for for several years and result in permanent movement and behavioral damage. As you can see it is not the step now causing the symptoms but the antibodies to the strep in the blood. The only way to clear those is IVIG or plasma exchange. Any stress (including vaccines, a viral infection, and in my son's case even anxiety) can cause a flare. It does sound like PANDAS but at the SC level.

iIknow this is overwhelming but there is a treatment and we have been making great strides to get this reconized as a disease. They have even recently started doing IVIG for this at Stanford. As Dr.Cunningham said at a recent lecture...these patients are coming out of the woodwork. It is unbelievable.

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We have an appointment on Thurs. with his ped. but I am not holding my breath. He did mention PANDAS once before but when we last spoke he told me that he had just read an article that doubted the very existence of PANDAS.

 

Let me guess.... June 2008 Pediatrics http://www.latitudes.org/forums/index.php?...art=#entry26571

 

Or possibly something by Harvey Singer http://www.latitudes.org/forums/index.php?...st=0#entry34463

 

Ughhh. <_<

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We have an appointment on Thurs. with his ped. but I am not holding my breath. He did mention PANDAS once before but when we last spoke he told me that he had just read an article that doubted the very existence of PANDAS.

 

 

You know--I am thinking we should all agree to just change the name of "PANDAS" to get away from the stigma it seems to stir in some...

 

How about "Brain inflammation that led to NEUROPSYCH issues coupled with tics at times...manifests with typical basal-ganglia involvement which may (or may not) include handwriting issues, bowel and urinary incontinence, OCD (sometimes crippling), sometimes anorexia, sensory sensitivity issues, and appears to abate with antibiotics, IVIG, or PEX."

 

Do you guys think that is too long!!! <_<

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Hah! My understanding is that - because of the baggage associated with the PANDAS term - some of the leading docs in this field are now calling it "pediatric autoimmune encephalitis." PAE... that's not hard to remember! ;)

 

 

We have an appointment on Thurs. with his ped. but I am not holding my breath. He did mention PANDAS once before but when we last spoke he told me that he had just read an article that doubted the very existence of PANDAS.

 

 

You know--I am thinking we should all agree to just change the name of "PANDAS" to get away from the stigma it seems to stir in some...

 

How about "Brain inflammation that led to NEUROPSYCH issues coupled with tics at times...manifests with typical basal-ganglia involvement which may (or may not) include handwriting issues, bowel and urinary incontinence, OCD (sometimes crippling), sometimes anorexia, sensory sensitivity issues, and appears to abate with antibiotics, IVIG, or PEX."

 

Do you guys think that is too long!!! <_<

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