Literature review of Swedo's PANDAS research

[bronxmom2]

Hi, I just did a lit review of Sue Swedo's PANDAS research... trying to find the studies of IVIG, prednisone, plasma exchange that Buster referred to. It was interesting to see the research evolving through time, so I thought I'd post if here.

 

She was looking at the relationship between SC and OCD as far back as 1989.

 

These are listed chronologically, most recent first. (The one I was looking for is #10)

 

 

 

Literature review—Susan Swedo

 

 

1. Children with obsessive-compulsive disorder: are they just "little adults"?

Swedo, Susan E.; Kalra, Simran K..

Journal of Clinical Investigation (0021-9738)

4/1/2009.Vol.119,Iss.4;p.737-746

Source: Health Source: Nursing/Academic Edition

 

2. Executive and attention functioning among children in the PANDAS subgroup.

Hirschtritt ME; Hammond CJ; Luckenbaugh D; Buhle J; Thurm AE; Casey BJ; Swedo SE.

Child Neuropsychology: A Journal On Normal And Abnormal Development In Childhood And Adolescence (1744-4136)

2009 Mar.Vol.15,Iss.2;p.179-94

Source: MEDLINE with Full Text

 

3. Tubulin is a neuronal target of autoantibodies in Sydenham's chorea.

Kirvan CA; Cox CJ; Swedo SE; Cunningham MW.

Journal Of Immunology (Baltimore, Md.: 1950) (0022-1767)

2007 Jun 1.Vol.178,Iss.11;p.7412-21

Source: MEDLINE with Full Text

 

4. Relationship of Movements and Behaviors to Group A Streptococcus Infections in Elementary School Children.

Murphy, Tanya K.; Snider, Lisa A.; Mutch, P. Jane; Harden, Elaine; Zaytoun, Annette; Edge, Paula J.; Storch, Eric A.; Yang, Mark C.K.; Mann, Giselle; Goodman, Wayne K.; Swedo, Susan E.; Murphy, Tanya K..

Biological Psychiatry (0006-3223)

2/1/2007.Vol.61,Iss.3;p.279-284

Source: Academic Search Premier

 

5. Antibody-mediated neuronal cell signaling in behavior and movement disorders.

Kirvan, Christine A.; Swedo, Susan E.; Snider, Lisa A.; Cunningham, Madeleine W.; Kirvan, Christine A..

Journal of Neuroimmunology (0165-5728)

10/1/2006.Vol.179,Iss.1/2;p.173-179

Source: Academic Search Premier

 

6. Neurocircuitry of disgust and anxiety in obsessive-compulsive disorder: A positron emission tomography study

Dan J. Stein; Monisha Arya; Pietro Pietrini; Judith L. Rapoport; Susan E. Swedo.

Metabolic Brain Disease

September, 2006.Vol.21,Iss.2-3;

Source: SpringerLink Contemporary (1997 - Present)

 

7. Streptococcal mimicry and antibody-mediated cell signaling in the pathogenesis of Sydenham's chorea.

Kirvan, Christine A.; Swedo, Susan E.; Kurahara, David; Cunningham, Madeleine W.; Kirvan, Christine A..

Autoimmunity (0891-6934)

2/1/2006.Vol.39,Iss.1;p.21-29

Source: Academic Search Premier

 

8. Antibody-mediated neuronal cell signaling in behavior and movement disorders

Kirvan, Christine A; Swedo, Susan E; Snider, Lisa A; Cunningham, Madeleine W.

Journal of Neuroimmunology (0165-5728)

2006.Vol.179,Iss.1-2;p.173-179

Source: Biological Abstracts (SilverPlatter)

 

9. Reply.

Swedo, Susan E.; Snider, Lisa A.; Swedo, Susan E..

Biological Psychiatry (0006-3223)

12/1/2005.Vol.58,Iss.11;p.918-919

Source: Academic Search Premier

 

10. Treatment of Sydenham's Chorea With Intravenous Immunoglobulin, Plasma Exchange, or Prednisone.

Garvey, Marjorie A.; Snider, Lisa A.; Leitman, Susan F.; Werden, Rose; Swedo, Susan E.; Garvey, Marjorie A..

Journal of Child Neurology (0883-0738)

5/1/2005.Vol.20,Iss.5;p.424-429

Source: Academic Search Premier

 

11. Antibiotic prophylaxis with azithromycin or penicillin for childhood-onset neuropsychiatric disorders.

Snider, Lisa A.; Lougee, Lorraine; Slattery, Marcia; Grant, Paul; Swedo, Susan E.; Snider, Lisa A..

Biological Psychiatry (0006-3223)

4/1/2005.Vol.57,Iss.7;p.788-792

Source: Academic Search Premier

 

12. Annotation: PANDAS: a model for human autoimmune disease.

Swedo, Susan E.; Grant, Paul J.; Swedo, Susan E..

Journal of Child Psychology & Psychiatry (0021-9630)

3/1/2005.Vol.46,Iss.3;p.227-234

Source: Academic Search Premier

 

13. Obsessive-compulsive symptoms among patients with sydenham chorea

Asbahr, Fernando R; Garvey, Marjorie A; Snider, Lisa A; Zanetta, Dirce M; Elkis, Helio; Swedo, Susan E.

Biological Psychiatry (0006-3223)

2005.Vol.57,Iss.9;p.1073-1076

Source: Biological Abstracts (SilverPlatter)

 

14. Does group A beta-hemolytic streptococcal infection increase risk for behavioral and neuropsychiatric symptoms in children?

Perrin EM; Murphy ML; Casey,; Pichichero ME; Runyan DK; Miller WC; Snider LA; Swedo SE.

Archives Of Pediatrics & Adolescent Medicine (1072-4710)

2004 Sep.Vol.158,Iss.9;p.848-56

Source: MEDLINE with Full Text

 

15. Anti-basal ganglia antibodies in PANDAS.

Singer HS; Loiselle CR; Lee O; Minzer K; Swedo S; Grus FH.

Movement Disorders: Official Journal Of The Movement Disorder Society (0885-3185)

2004 Apr.Vol.19,Iss.4;p.406-15

Source: MEDLINE with Full Text (

 

16. The Pediatric Autoimmune Neuropsychiatric Disorders Associated With Streptococcal Infection (PANDAS) Subgroup: Separating Fact From Fiction.

Leonard, Henrietta L.; Rapoport, Judith L.; Swedo, Susan E..

Pediatrics (0031-4005)

4/1/2004.Vol.113,Iss.4;p.907-911

Source: Health Source: Nursing/Academic Edition

 

17. Mimicry and autoantibody-mediated neuronal cell signaling in Sydenham chorea.

Kirvan, Christine A; Swedo, Susan E; Heuser, Janet S; Cunningham, Madeleine W; Kirvan, Christine A.

Nature Medicine (1078-8956)

7/1/2003.Vol.9,Iss.7;p.914

Source: Academic Search Premier

 

18. An immunological marker (D8/17) associated with rheumatic fever as a predictor of childhood psychiatric disorders in a community sample

Inoff Germain, Gale; Rodriguez, Romeo S; Torres Alcantara, Saul; Diaz Jimenez, Maria Juana; Swedo, Susan E; Rapoport, Judith L.

Journal of Child Psychology and Psychiatry and Allied Disciplines (0021-9630)

2003.Vol.44,Iss.5;p.782-790

Source: Biological Abstracts (SilverPlatter)

 

19. Genetics of Childhood Disorders: XXXIII. Autoimmunity, Part 6: Postsreptococcal Autoimmunity.

Swedo, Susan E.; Swedo, Susan E..

Journal of the American Academy of Child & Adolescent Psychiatry (0890-8567)

12/1/2001.Vol.40,Iss.12;p.1479

Source: Academic Search Premier

 

20. An open trial of plasma exchange in childhood-onset obsessive-compulsive disorder without poststreptococcal exacerbations

Rob Nicolson; Susan E Swedo; Marge Lenane; Jeffrey Bedwell; et al.

Journal of the American Academy of Child and Adolescent Psychiatry; Baltimore (0890-8567)

Oct 2000.Vol.39,Iss.10;p.1313

Source: ProQuest Research Library

 

21. Psychiatric disorders in first-degree relatives of children with pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections (PANDAS)

Lorraine Lougee; Susan J Perlmutter; Rob Nicolson; Marjorie A Garvey; Susan E Swedo.

Journal of the American Academy of Child and Adolescent Psychiatry; Baltimore (0890-8567)

Sep 2000.Vol.39,Iss.9;p.1120

Source: ProQuest Research Library

 

22. Therapeutic plasma exchange and intravenous immunoglobulin for obsessive-compulsive disorder and tic disorders in childhood.

Leitman, Susan F.; Garvey, Marjorie A.; Hamburger, Susan; Feldman, Elad; Leonard, Henrietta L.; Swedo, Susan E.; Perlmutter, Susan J..

Lancet (0099-5355)

10/2/1999.Vol.354,Iss.9185;p.1153-1158

Source: Health Source: Nursing/Academic Edition

 

23. Pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections: Clinical description of the first 50 cases

Susan E Swedo; Henrietta L Leonard; Marjorie Garvey; Barbara Mittleman; et al.

The American Journal of Psychiatry; Washington (0002-953X)

Feb 1998.Vol.155,Iss.2;p.264

Source: ProQuest Research Library

 

24. Autonomic activity in relation to cerebrospinal fluid neurochemistry in obsessive and disruptive children and adolescents

THEODORE P. ZAHN; MARKUS J. P. KRUESI; SUSAN E. SWEDO; HENRIETTA L. LEONARD; JUDITH L. RAPOPORT.

Psychophysiology

November 1996.Vol.33,Iss.6;p.731-739

Source: Blackwell-Synergy

 

25. Case Study: Acute Basal Ganglia Enlargement and Obsessive-Compulsive Symptoms in an Adolescent Boy

Giedd, Jay N.; Rapoport, Judith L.; Leonard, Henrietta L.; Richter, Daniel; Swedo, Susan E.; Giedd, Jay N..

American Academy of Child and Adolescent Psychiatry. Journal (0890-8567)

1/1/1996.Vol.35,Iss.7;p.913-915

Source: Family & Society Studies Worldwide

 

26. Sydenham's chorea: A model for childhood autoimmune neuropsychiatric disorders

Swedo, Susan E.

JAMA; The Journal of the American Medical Association; Chicago (0098-7484)

Dec 14, 1994.Vol.272,Iss.22;p.1788

Source: ProQuest Health Management

 

27. Speculations on antineuronal antibody-mediated neuropsychiatric disorders of childhood.

Leonardo, Henrietta L.; Swedo, Susan E..

Pediatrics (0031-4005)

2/1/1994.Vol.93,Iss.2;p.323

Source: Health Source: Nursing/Academic Edition

 

28. Sydenham's Chorea: Physical and Psychological Symptoms of St Vitus Dance.

Leonard, Henrietta L.; Schapiro, Mark B.; Casey, B.J.; Mannheim, Glenn B.; Lenane, Marge C.; Rettew, David C.; Swedo, Susan E..

Pediatrics (0031-4005)

4/1/1993.Vol.91,Iss.4;p.706

Source: Health Source: Nursing/Academic Edition

 

29. High-Prevalence of Obsessive-Compulsive Symptoms in Patients with Sydenham's Chorea

Swedo, Susan E; Rapoport, Judith L; Cheslow, Deborah L; Leonard, Henrietta L; Ayoub, Elia M; et al.

The American Journal of Psychiatry; Washington (0002-953X)

Feb 1989.Vol.146,Iss.2;p.246

Source: ProQuest Health Management

[Buster]

Hi Bronxmom2,

 

The paper I was referring to about PANDAS and the effectiveness of IVIG and Plasma Exchage was: Perlmutter's 1999 Lancet report: http://intramural.nimh.nih.gov/pdn/pubs/pub-5.pdf

 

I didn't see it in your list. It's a great paper.

 

Another one you might like to see (i.e., if you're into historical landmarks) is Gannar Husby's paper "Antibodies Reacting with Cytoplasm of SubThalamic and Caudate Nuclei Neruons in Chorea and Acute Rheumatic Fever" at http://jem.rupress.org/cgi/reprint/144/4/1094 . This amazing paper from 1976 (yes 1976) is the oldest I've found and I think it was lost in the literature until Cunningham found it in her work on Pathogenesis of group A streptococcal infections.

 

Husby lays out the whole autoimmune theory that was later found by Swedo and the antiboidies isolated by Kirvan.

 

At this point, it would be fair to say there has been 33 years of research on this :-)

 

The paper I was citing in my other post was :

http://linkinghub.elsevier.com/retrieve/pi...887899405005436

 

which compares effectiveness of the various treatments on SC kids -- with 1 month and 1 year followups.

 

 

Buster

 

 

 

 

Hi, I just did a lit review of Sue Swedo's PANDAS research... trying to find the studies of IVIG, prednisone, plasma exchange that Buster referred to. It was interesting to see the research evolving through time, so I thought I'd post if here.

[bronxmom2]

thanks!

[Caryn]

Did you catch her one hour lecture at the DAN conference in October 2008? Sheila Rogers just sent it to me for review.

 

http://www.autism.com/danwebcast/video.asp...;videonumber=84

 

Dr. Swedo talks at length about symptomology, Chorea, Rheumatic Fever, Autism, and of course, PANDAS. She discusses her work in detail and gives a good summary of information on the subject. It is a technical talk but I still think folks who watch it that have little or no background will get something out of it.

 

What I found most interesting is her reticence toward IVIG. She said it should be reserved for worst case scenarios due to the risk factors involved. She had patients who contracted Hepatitis C from contaminated donor supplies, for example.

[dcmom]

I am hoping some of the knowledgeable forum members will speak to the risk of IVIG (vs pex). I know the risk of pex is probably the central line that they use.

 

I am under the impression that IVIG is rather safe. I think the cases with transmission of Hep was over 10 yrs ago, and that there haven't been any problems since then. Does anyone have any stats or real info?

 

Thanks...

[P_Mom]

Again

[P_Mom]

Geez, don't know what happened...triple post!

[P_Mom]

And yet again...sorry, last time!

[P_Mom]

Yeah...if you go on to the Q&A session of Swedo's presentation, she is very clear to say you can no longer get Hep C from IVIG today...that was a decade ago when the risk was there because it was a "new" illness, they have not had problems with transmission of viruses since then. IVIG is considered a routine and safe procedure, although any precedure has risks, but, it is my understanding the risks are less of that than a T&A. Virtually all chance of transmission of any serious virus has been eliminated due to extensive screening and cleaning procedures used today. However, there will always remain the chance of a different, unknown of as today, virus emerging like the Hep C in the 90's. The dozens of kids that I know of that have received IVIG have had no problems with it except for the expected second day headache, etc., which resolves in a day.

 

I think there is much going on behind the scenes that we will never be aware of. I don't think Swedo is allowed to endorse IVIG today because of red tape ...I think her hands are tied.....Supply is limited, PANDAS is still controversial (for whatever reason ), and insurance companies are not yet on board........things can get messy. Swedo has guidelines she needs to follow and is only "allowed" to do and reveal so much.

 

I also personally believe the "reserved for only the most serious cases" is going to change in time. I think the earlier you catch and treat it, the better results you get. A milder PANDAS would clear easier than a serious PANDAS. I know a woman who has posted here who did IVIG for her son within 6 months of onset, he was functional and symptoms were mild at the time. He has been symptom free since....over 3 years with no exacerbations.

 

I believe you are correct...the PEX is considered more risky, although you will hear conflicting reports on this, (of course!!, nothing is straightforward for us PANDAS Moms), because of the central line use with the risk of infection and greater procedure time.

 

Hope this helps.

 

Kelly

[Caryn]

I don't think Swedo is allowed to endorse IVIG today because of red tape ...I think her hands are tied.....Supply is limited, PANDAS is still controversial (for whatever reason ), and insurance companies are not yet on board........things can get messy. Swedo has guidelines she needs to follow and is only "allowed" to do and reveal so much.

Kelly,

 

Did you watch the full video presentation? It is an hour long and she really got into the details of her studies at the end of it. To say that she won't endorse IVIG because of red tape is presumptuous. I think we have to give her credit for having as many years experience as she has. She discussed a clinical study that showed it wasn't any more effective than the other treatments. She also clearly stated that it should only be reserved for 'worst case scenarios'. Additionally, she stated that the risk factors were often too great considering the end result was often only a temporary improvement. She also CLEARLY stated that if IVIG was not successful after the first course that a second course should NOT be considered. I think folks need to be careful promoting IVIG as a 'miracle' cure. It is good to weigh the pros and cons and know full well what the options are. Over 1000 blood donors are used to make the plasma serum and there are several risks, such as anaphylactic shock, for example. The treatment doesn't protect the urinary tract and can cause renal failure. If you have a child with comorbid issues these things need to be carefully thought out. Also, a weakened heart may pose serious risks that might be overlooked if it hasn't been screened for. I think Swedo's stance is conservative because she has had much experience using IVIG and has seen the damage it can do. She specifically mentioned a case where such damage occurred in the video presentation. Whether or not Hepatitis C infections were only prominent a decade ago makes no difference to me. The risk is still present. You are counting on them screening for hepatitis. If there is another infectious agent not screened it will be injected into your immune compromised child.

[P_Mom]

Every parent who choses to have IVIG done for their child is made WELL aware of all the risks before the procedure. dr.k does a pre IVIG appointment for an hour a day before IVIG and makes sure the parents know the risks and know their options.... no treatment being one of his options. There are many forms to sign stating that you are aware of these risks. He also is very clear about the fact that even NO benefit may be seen. Noboby goes into this with blinders on or made to feel that this is a day at the beach. Someone can go into anaphylactic shock from taking an aspirin....Advil can damage your liver or in rare cases, cause Steven Johnson Syndrome, etc., etc.....my point is there are risks to EVERYTHING....we all know this.

 

Swedo is currently working with dr.k and others and putting together another IVIG study with Leckman at Yale. I am sure much has changed since the original study in the 90's. I don't think she would be participating in the study if she didn't believe in IVIG, or if she felt it was too dangerous. I believe the doors to IVIG for these kids are going to be wide open hopefully in the next few years. It has done absolute wonders for some children...and for many of these kids, they have held their gains. And yes, I know, many have not.

 

I did watch the whole thing....I don't think she said that another course of IVIG should NOT be considered if it didn't work the first time....I think she said that if it is going to work, it will work the first time..that you didn't have to do it again.

 

If I was presumptuous about her hands being tied because of red tape, well, I was going off of something I was told from someone who knows people at NIMH, and about the new researchers taking over and about how Swedo's funding was cut and research shut down for PANDAS,(and it wasn't because of the dangers of IVIG) Okay, second hand news. I get that, and I do give Sewdo ALOT of credit!!

 

Don't worry....we are all well aware of the IVIG risks.....and nobody ever called it a "miracle" cure.

[colleenrn]

IVIG has been used routinely for a long time with many other disorders. It is not something "new" that is unknown. It is just new to PANDAS, but it does work, no question about it in my mind.

Colleen

[chrisw]

I fully agree with P. mom. When we get in our cars everyday, statistically we are putting ourselves at risk. Most of us don't let that stop us from carrying on with our lives and doing the best we can. I believe that IVIG or PEX gives our children the BEST chance at a good quality of life, not to mention the entire family. Yes, you weigh the risks. For us, IVIG was the option we chose. We are 7 weeks post IVIG and doing GREAT! Would I do it again? In a heartbeat. Rock On P. Mom!

Christie

[bmom]

I have spoken with many doctors that do IVIG routinely for other disorders. They do not believe that it is that dangerous. For my son, tonsil removal was much worse! I wonder what the risks for that is and yet it is done all the time. IVIG has been a god send for us and we are finally putting our family and life back together. I also spoke with Swedo's assistant prior to IVIG. She did say it was reserved for extreme cases, but when I asked why? She did not have a response nor did she when I asked what the risks are now. So is it the price out of pocket? I do and would take it seriously, but for some it is an option - maybe not a full cure in all cases (ours included so far) but at least a clear improvement.

[dcmom]

I am sorry to say, that I thinkk IVIG is reserved for extreme cases, because many medical doctors don't take mental illness seriously. If my daughter had trouble breathing- they would not think twice about using "risky" methods to help her. They don't believe and/or understand how incapacitating ocd, etc. can be. Psychiatrists are more compassionate, but not necessarily comfortable with anything other than meds. That leaves pandas parents stuck in the abyss between the two medical fields. Our only hope is compassionate doctors, who think for themselves, to help our children.

 

The insurance companies, I am sure, only contribute to make matters worse...

 

(Sorry, I have become somewhat cynical through this experience...)