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Great responses but I need a bit of help on the Saving Samming FB page.

 

Here is the response I got:

 

Thanks, Nancy, that's a 2008 post on a blog by a parent of his interpretations. The leading PANDAS researchers are in sync with Swedo's information though as stated above via the Autism One conference in May 2010.

 

All the parents of low titer kids feeling lost and not getting treatment because of her remarks. Please post about your low titers child there, so thise parents will push for answers and not give up.

 

Nancy

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My response, please back me up:

 

http://intramural.nimh.nih.gov/pdn/pubs/pub-19.pdf This is the Swedo/ Cunningham research that we participated in. Their findings were that my child, and others clearly have PANDAS. My daughter with an ASO of 140. Her cam kinase levels were 140 and 3 of the four antineuronal antibodies were elevated. This is new research, run by Swedo and Cunningham. To participate one only needs to contact Dr. C here madeleine-cunningham@ouhsc.edu Also your post states only 75-78% will have an elevated ASO. That leaves 22% that do not. But more importantly, our kids who have positive Cunningham test results prove they DO have PANDAS! It does such a disservice to these kids who need PANDAS treatment but are being denied it when doctors claim only high ASO or anti Dnase "Qualify". Also why are these low titers children being successfully treated by PANDAS doctors? Lots of them too. I know your care for and want to help all pf our PANDAS kids. We should be looking for sub sets of PANDAS instead of disagreeing.

 

Great responses but I need a bit of help on the Saving Samming FB page.

 

Here is the response I got:

 

Thanks, Nancy, that's a 2008 post on a blog by a parent of his interpretations. The leading PANDAS researchers are in sync with Swedo's information though as stated above via the Autism One conference in May 2010.

 

All the parents of low titer kids feeling lost and not getting treatment because of her remarks. Please post about your low titers child there, so thise parents will push for answers and not give up.

 

Nancy

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I replied with my daughter's story as well as Dr. Trifiletti's proposal of type 2 PANDAS-immunocompromised kids who do not show a response with titer rise. A comment that says that the leading researchers only follow the "cookbook" laid out at the Autism one conference was like a slap in the face. Was she trying to say that our low titer kids do not have PANDAS?? that's how I took it. And if so, that infuriates me.

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I don't think we can say Dr. Cunninghams test "proves" pandas just yet though. I mean I think it's relevant and it helped piece things together for my son but I don't know we can say it proves things just yet when Dr. Cunningham hasn't quite said that. She could only tell me that he fell mid range for where other children who were suspected to have pandas fell. Unless I misunderstood and there has been more to it now.

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My responses were moved to the discussion page due to their length. Beth wrote a nice note hoping they would be seen there so mom's with questions would write. We mom's of kids with low titers really need to get our message out on every board and PANDAS group. We participated in the Cunningham study (THANK GOD!) and were classified as PANDAS kids. If I hadn't, my child would still be huddled in a ball on the floor nonfunctional . This is important. I don't want to "get in to it," with anyone arguing when our pooled minds can work together to help all the kids. It was kind of Beth to keep my posts even though we disagreed. Lets vote on a domain name and get Dr. Cunningham funded, so all of our kids can get help!

 

Nancy

 

I replied with my daughter's story as well as Dr. Trifiletti's proposal of type 2 PANDAS-immunocompromised kids who do not show a response with titer rise. A comment that says that the leading researchers only follow the "cookbook" laid out at the Autism one conference was like a slap in the face. Was she trying to say that our low titer kids do not have PANDAS?? that's how I took it. And if so, that infuriates me.

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Read this thread...

 

Those with low strep titers (ASO/anti-dnase b )... can you do me a big favor????

http://www.latitudes.org/forums/index.php?showtopic=5694&st=0&p=42431&fromsearch=1entry42431

 

If you need to, message the people who took part. We been trying to explain this to Beth for a long time now as you see by that thread.

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Please post on the Saving Sammy FB page about this. I also included my letter from Dr. C:

 

Dear Nancy

 

Thank you for your incredibly supportive letter

below. We are not certain but think that there

will be patterns of behavior that go along with

particular antibodies. This is part of our study.

 

Some children have anti-neuronal

antibodies and generally not all of them but some do

have high everything including the CAM kinase levels

and they generally have tics and OCD together. The CAM

kinase level may reflect either type but was very associated

with choreiform movements as in the nature medicine paper

that I will attach and probably have sent you before.

CAM score of 140 is definitely positive but in the lower range

and her anti-neuronal antibodies may contribute as we do see

in other children. We are trying to compile the data to eventually

publish what we have found from the parental network of children.

Your description below is very important for us to know how to place

your children as far as diagnosis and symptoms. Thank you for

sending this information.

 

For the anti-neuronal antibodies, the thing to look at is the normal

mean because this is where most normal children fall. Some without

symptoms can have high levels but we set up the range to let you know

what it is but for example the titer of 320 is very high for anti-lysoganglioside.

Some children are higher but many who have symptoms are at this level

but a few normal children may have that 320 titer but not so many. That is why

the normal mean is 160. This should be on your paperwork.

 

As for your son, the CAM kinase score at 189 appears to be associated with behaviors

or movements either one. A child may not have high anti-neuronal antibody titers

and still have a high CaM score.

 

The donations can be made to the PANDAS Research Fund at the Oklahoma University

Foundation. We now must ask for reimbursement of $400 for testing, shipping and handling.

The payment can be made as a tax deductible donation to our PANDAS Research Fund

through the Oklahoma University Foundation. The OU Foundation has recently made it

possible to pay with a credit card. We wish that we could perform the test free of charge

but that is not possible at this time.

 

The pediatric neurologists or immunologists should contact me if they want to send patients.

We are happy to take patients from other clinics but have to talk with them

so that we can make the arrangements for the parent letter, consent forms, HIPAA forms

and payment as we have to charge now for the test as we no longer have funds. We have

applied for funding but are still waiting for this. I will continue to try for large scale funding

from NIH and it should happen one of these years.

 

Thank you again and Best Wishes

madeleine

 

Madeleine W. Cunningham, Ph.D.

George Lynn Cross Research Professor

Microbiology and Immunology

Director, NIAID-supported Immunology Training Program

University of Oklahoma Health Sciences Center

Biomedical Research Center Room 217

975 NE 10th Street

Oklahoma City, OK 73104

Tel 405-271-3128

Lab 405-271-2133 X47455

FAX 405-271-2217

email: madeleine-cunningham@ouhsc.edu

 

Also stating that my daughters ASO was 140 AND Dr. C's research is also Dr. Swedo's. BOTH names are on the study. Let's get our Ebook out there.

 

Nancy

 

Read this thread...

 

Those with low strep titers (ASO/anti-dnase b )... can you do me a big favor????

http://www.latitudes.org/forums/index.php?showtopic=5694&st=0&p=42431&fromsearch=1entry42431

 

If you need to, message the people who took part. We been trying to explain this to Beth for a long time now as you see by that thread.

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All ya gotta do is look up Swedo's study of kids with PANDAS and the effects of PEX and IVIG. I don't have time right now to post the link....but, it is her published paper on the two treatments. In part of the study, it lists the characteristics of the children enrolled in the study BEFORE IVIG or PEX. It clearly stated that only about half had high ASO or AntiDNAase B titer.......there were several enrolled in the study with negative titers, diagnosed PANDAS, and responded to treatment.

 

Also, where in the diagnostic criteria does it list raised titers???? Just look at Swedo's criteria for PANDAS!

 

Hope this helps!

 

Kelly

 

Mom of two PANDAS boys (clear cut cases) with NEGATIVE ASO and AntiDNAase B titers....always low!!! Dramatic response to antibiotics and predisone....currently holding at about 95-98% after three years. (dips a bit with illness/exposure to about 80-85%...then, we bounce back up)

Edited by P.Mom
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OK I'm willing to, but the poor moms at Saving Sammy need you to post them there if you could. Thats where we need to prowl to set the record straight, so no other low iter kids will be left out. So please folks post it there!

 

Nancy

 

All ya gotta do is look up Swedo's study of kids with PANDAS and the effects of PEX and IVIG. I don't have time right now to post the link....but, it is her published paper on the two treatments. In part of the study, it lists the characteristics of the children enrolled in the study BEFORE IVIG or PEX. It clearly stated that only about half had high ASO or AntiDNAase B titer.......there were several enrolled in the study with negative titers, diagnosed PANDAS, and responded to treatment.

 

Also, where in the diagnostic criteria does it list raised titers???? Just look at Swedo's criteria for PANDAS!

 

Hope this helps!

 

Kelly

 

Mom of two PANDAS boys (clear cut cases) with NEGATIVE ASO and AntiDNAase B titers....always low!!! Dramatic response to antibiotics and predisone....currently holding at about 95-98% after three years. (dips a bit with illness/exposure to about 80-85%...then, we bounce back up)

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where does it say in the research that the kids dont have to have elevated titers??I read the article I cant find it!!

 

Thanks

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What are the diagnostic criteria for PANDAS?

 

A. They are:

 

1.Presence of Obsessive-compulsive disorder and/or a tic disorder

2.Pediatric onset of symptoms (age 3 years to puberty)

3.Episodic course of symptom severity

4.Association with group A Beta-hemolytic streptococcal infection (a positive throat culture for strep. or history of Scarlet Fever.)

5.Association with neurological abnormalities (motoric hyperactivity, or adventitious movements, such as choreiform movements)

 

So, where is the titer criteria????

 

What does an elevated anti-streptococcal antibody titer mean? Is this bad for my child?

 

A. An elevated anti-strep. titer (such as ASO or AntiDNAse-B) means the child has had a strep. infection sometime within the past few months, and his body created antibodies to fight the strep. bacteria. Some children create lots of antibodies and have very high titers (up to 2,000), while others have more modest elevations. THE HEIGHT OF THE TITER ELEVATION DOESN'T MATTER. Further, elevated titers are not a bad thing. They are measuring a normal, healthy response – the production of antibodies to fight off an infection. The antibodies stay in the body for some time after the infection is gone, but the amount of time that the antibodies persist varies greatly between different individuals. Some children have "positive" antibody titers for many months after a single infection.

 

 

Melanie....from Swedo's study......

 

Throat cultures were negative at baseline in all subjects.

Titres of antistreptolysin-O were similar among the three

groups (plasma exchange: three negative, seven positive,

mean 458 [sD 229]; IVIG: five, four, mean 517 [290];

placebo: five, five, mean 350 [147]). Antistreptococcal

deoxyribonucleic B titres were also similar among the three

groups (plasma exchange: five negative, five positive, mean

452 [sD 278]; IVIG: two, seven, mean 780 [434]; placebo:

three, seven, mean 546 [391]). There was no correlation

between baseline titres and degree of treatment response for

any group, or for the study population as a whole.

 

 

And....did you know Swedo used 1 gram per kilogram of IVIG for the study??? I always thought it was more.....wow...always learning!!!

Edited by P.Mom
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Great responses but I need a bit of help on the Saving Samming FB page.

 

Here is the response I got:

 

Thanks, Nancy, that's a 2008 post on a blog by a parent of his interpretations. The leading PANDAS researchers are in sync with Swedo's information though as stated above via the Autism One conference in May 2010.

 

All the parents of low titer kids feeling lost and not getting treatment because of her remarks. Please post about your low titers child there, so thise parents will push for answers and not give up.

 

Nancy

My goodness. Have you just sent her the Shet paper?

 

http://www.journals.uchicago.edu/doi/pdf/10.1086/377700

 

Please take a look at figure 6. That's sort of a simple explanation of the findings. This is a paper by Ed Kaplan and Pat Cleary, two of the foremost experts on GABHS. By the way, what "blog" is she referring to.

 

Best regards,

 

Buster

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Have you just sent her the Shet paper?http://www.journals.uchicago.edu/doi/pdf/10.1086/377700Please take a look at figure 6. That's sort of a simple explanation of the findings.

 

She has the full article. I sent it to her the day after the AO conference, in response to a group email she sent to Dr. Swedo, Cunningham and others at the AO conference.

 

I don't have the same recollection of Dr Swedo's response when this paper was discussed. It wasn't quite so black and white. During the conversation Beth refers to, Dr Swedo asked where the 37% figure came from, as she kept hearing it, but didn't know the source. Most doctors rely on studies that have shown that 90% of kids have elevated ASO or Anti-DNase B - IF they are done at the correct time (but let's not lose sight of the 10% and the whole timing issue and even the canary issue). The doctors weren't familiar with the Shet/Kaplan study and I forwarded the complete study after the conference. None provided any feedback other than to say it might be something they could discuss directly with Dr Kaplan. It was not dismissed out of hand, but rather tabled until they could read the study and discuss with those who were more knowledgeable. I assume the doctors will rely on their current understanding for the time being, but they were not closed minded to new information.

 

All this being said, I don't think you as a parent are going to change minds about titers. Rather, I would focus on the thing others have mentioned - titers are not part of any diagnostic criteria and subsequent episodes can be PITANDS, triggered by other pathogens or even simple exposure to other pathogens. I would hope that even tho there are different lines of thinking regarding the relevance of titers, we could all agree that helping parents obtain a correct diagnosis and treatment for their Pandas child is the true goal.

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