[Buster]

What is PANDAS?

PANDAS is a pediatric autoimmune disorder characterized by the dramatic onset of neuropsychiatric symptoms such as obsessions, compulsions, motor or vocal tics [Swedo1997]. PANDAS is thought to be similar to Sydenham Chorea where there is dramatic symptom exacerbation following a strep infection[Kirvan2006].

Signs and Symptoms:

Children with PANDAS must be initially diagnosed with Obsessive Compulsive disorder or a tic disorder [Swedo2004]. These children may have some of the following symptoms that accompany the OCD or tic disorder [Swedo1998][Moretti2006]:

• Obsessions (e.g., preoccupation with a fixed idea or an unwanted feeling, often accompanied by symptoms of anxiety)
  
• Compulsions (e.g., an irresistible impulse to act, regardless of the rationality of the motivation)
  
• Choreiform movements (e.g., milk-maid grip, fine finger playing movements in stressed stance)
  
• Emotional lability (e.g.,irritability, sudden unexplainable rages, fight or flight behaviors) (66%)
  
• Personality changes (54%)
  
• Age inappropriate behaviors particularly regressive bedtime fears/rituals (50%)
  
• Separation anxiety (46%)
  
• Oppositional defiant disorder (40%)
  
• Tactile/sensory defensiveness (40%)
  
• Hyperactivity, impulsivity, fidgetiness, or inability to focus (40%)
  
• Major Depression (36%)
  
• Marked deterioration in handwriting or math skills. (26%)
  
• Daytime urinary frequency/enuresis (12%)
  
• Anorexia (particularly fear of choking, being poisoned, contamination fears, fear of throwing up)

PANDAS/OCD is a clinical diagnosis, often marked by the sudden onset and extreme symptom exacerbations (such as an increase of +18 points on the OCD CY-BOCS score during an exacerbation [Murphy2004]). The abrupt onset and remission after eradication of streptococcal infection separates the child from non-PANDAS OCD[Swedo2004]. Many parents can pinpoint a day or a week when behaviors changed [Çengel-Kültür2009]

When a child has primarily vocal and motor tics, the symptoms may appear to overlap with symptoms of Tourettes Syndrome; however, the children can be differentiated by observing symptom exacerbations over time [Pavone2006]. In PANDAS children, a streptococcal infection precedes symptom exacerbation and once treated, initial exacerbations generally remit. The rapid onset with significant remission is characteristic of PANDAS.

Researchers have described chronic PANDAS [Pavone2006] where the tics and/or obsessive-compulsive disorder have a much more gradual course. These cases are difficult to separate from non-PANDAS tics or OCD. Some researchers have found other immunologic markers (anti-neuronal and anti-basal-ganglia antibodies) that help separate PANDAS and non-PANDAS children[Kirvan2006].

Diagnostic tests:

At this time, there are no commerically available tests for diagnosing PANDAS. There are ongoing research trials that indicate there are differences in specific antibodies that can be tested in blood serum. [Kirvan2006] [Church2006][Martono2007]. These are recent findings and the accuracy, repeatability and specificity of the results are not known. Additional research funding is needed to repeat the experiments at independent laboratories and confirm the diagnostic effectiveness.

A throat culture for Group A Beta-Hemolytic streptococcus (GABHS) at time of exacerbation onset is recommended to diagnose a pharyngeal streptococcal infection [Swedo2004]. If the culture is negative, a blood test may be able to test for streptococcal exotoxins. A common blood test is Anti-Streptolycin O. While this test can confirm a previous strep infection, it cannot exclude a prior infection or a diagnosis of PANDAS. This test is affected by many factors and in one study over 46% of children did not have a rising ASO titer despite having colonized strep [Shet2003].

For children affected by PANDAS, a GABHS infection is considered to be the triggering event that causes an initial episode. However, as is the case with Sydenham’s Chorea, subsequent PANDAS exacerbations may be triggered by recurrent GABHS, or by other bacterial or viral infections (ear infections, sinusitis, pneumonia, meningitis, impetigo) further complicating diagnosis [Swedo1998].

Treatment:

Streptococcal infections are treated with antibiotics.

Cognitive Behavioral Therapy (CBT) has been shown to be effective in some children with PANDAS and to provide families with coping strategies during a PANDAS flare [Storch2006]. Caution is recommended for using SSRI's with PANDAS/OCD as there are reports of higher activation rates in such cases [Murphy2006]. In addition, there is a lack of controlled studies showing safety and efficacy of anti-tic or anti-OCD medications (e.g., SSRI and anti-psychotics) for children in the PANDAS subgroup.

Several reports have shown effectiveness of immunomodulating therapy (IVIG and PEX) in combination with longer term prophylactic antibiotics[Perlmutter1999]. In addition, several studies have shown efficacy of longer term prophylactic antibiotics alone [Snider2005]. These treatments are still considered experimental and have several risks. Some physicians will use a prednisone steroid burst for a short period of time to assist in diagnosis of an auto-immune disorder. Immunomodulating therapies are not effective for Tourettes Syndrome or other non-PANDAS OCD cases, again separating the child with PANDAS [Nicolson2000].

Getting Help:

PANDAS was only identified in 1998 and as such is a recent disease [Swedo1998]. Additional research is needed to identify the most effective treatment protocols. Taking copies of recent studies to your doctor may help them diagnose and treat your child. You may need to interview pediatricians, neurologists and immunologists. For referrals to local doctors with experience, one source is a parent’s support group at http://www.latitudes...?showtopic=3928.

Research:

PANDAS is thought to be caused by the following sequence of events in this order:

• The production by the immune system of an antibody that can interact with neuronal tissue [Kirvan2006]
  
• A failure of the immune system to suppress this antibody
  
• A breach of the blood brain barrier such that the antibody reaches neuronal tissue [Yaddanapudi2009]

All three areas have active research results and require duplication of experiments to help reach consensus in the research community.
For those interested in a brief history of PANDAS research, please see http://www.latitudes.org/forums/index.php?...amp;#entry36300

Other considerations:

Other autoimmune illnesses that may cause sudden onset OCD and other neuropsychiatric disorders include: Lyme Disease, Thyroid Disease, Celiac Disease, Lupus, Sydenham Chorea, Kawasaki’s disease, and acute Rheumatic Fever [Schneider2002]. Some children have been found to have Immunology challenges such as IgG subclass deficiencies. Children will need to be evaluated for this issue by an immunologist. In addition, while there is good evidence of anti-neuronal antibodies in PANDAS, the diagnosis remain controversial primarily due to the observations by Johns Hopkins researchers who have not been able to detect such antibodies in their research subjects [Martono2007].

References

[Swedo1997] S Swedo et al, “Identification of Children With Pediatric Autoimmune Neuropsychiatric Disorders Associated With Streptococcal Infections by a Marker Associated With Rheumatic Fever”, Am J Psychiatry 154:1, January 1997 http://ajp.psychiatr...t/154/1/110.pdf

[Kirvan2006] Kirvan CA, Swedo SE, Kurahara D, Cunningham MW, "Streptococcal mimicry and antibody-mediated cell signaling in the pathogenesis of Sydenham's chorea". 2006 Autoimmunity 39 (1): 21–9. http://www.pandasnet...NICaMKinase.pdf

[Swedo2004] Swedo SE, Leonard HL, Rapoport JL.” The pediatric autoimmune neuropsychiatric disorders associated with streptococcal infection (PANDAS) subgroup: separating fact from fiction”, Pediatrics. 2004 Apr;113(4):907-11. http://pediatrics.aa...print/113/4/907

[Moretti2008] Moretti G, Pasquini M, Mandarelli G, Tarsitani L, Biondi M (2008). "What every psychiatrist should know about PANDAS: a review". Clin Pract Epidemol Ment Health 4: 13. http://www.ncbi.nlm.nih.gov/pmc/articles/P...5-0179-4-13.pdf

[Swedo1998] Swedo SE et al., “Pediatric Autoimmune Neuropsychiatric Disorders Associated With Streptococcal Infections: Clinical Description of the First 50 Cases”, Am J Psychiatry 155:2, February 1998. http://ajp.psychiatr...print/155/2/264

[Çengel-Kültür2009]Çengel-Kültür2009, et al. "The relationship between group A beta hemolytic streptococcal infection and psychiatric symptoms: a pilot study", The Turkish Journal of Pediatrics 2009; 51: 317-324, http://www.turkishjournalpediatrics.org/pe...pdf_TJP_674.pdf

[Murphy2004] Murphy TK, Muhammad S, Soto O, et al. “Detecting pediatric autoimmune neuropsychiatric disorders associated with streptococcus in children with obsessive-compulsive disorder and tics”, Biological Psychiatry, Volume 55, Issue 1, Pages 61-68, January 2004 http://www.journals.elsevierhealth.com/per...0704-2/abstract

[Pavone2006] Pavone P, Parano E, Rizzo R, Trifiletti RR (2006). "Autoimmune neuropsychiatric disorders associated with streptococcal infection: Sydenham chorea, PANDAS, and PANDAS variants". J Child Neurol 21 (9): 727-36. http://jcn.sagepub.c...stract/21/9/727

[Shet2003]Shet A, Kaplan EL, Johnson DR, Cleary PP, “Immune response to group A streptococcal C5a peptidase in children: implications for vaccine development”, J Infect Dis. 2003 Sep 15;188(6):809-17. http://www.journals..../10.1086/377700

[Storch2006]Storch EA, Murphy TK, Geffken, G et al, “Cognitive-Behavioral Therapy for PANDAS-Related Obsessive-Compulsive Disorder: Findings From a Preliminary Waitlist Controlled Open Trial”, Journal of the American Academy of Child & Adolescent Psychiatry: October 2006 - Volume 45 - Issue 10 - pp 1171-1178 http://www.ncbi.nlm....pubmed/17003662

[Murphy2006]Murphy TK, Storch EA, Strawser MS, “Selective serotonin reuptake inhibitor-induce behavioral activation in the PANDAS subtype”, Primary Psychiatry, 2006;13(8):87-89, http://mbldownloads....06PP_Murphy.pdf

[Perlmutter1999]Perlmutter SJ, Leitman SF, Garvey MA, “Therapeutic plasma exchange and intravenous immunoglobulin for obsessive-compulsive disorder and tic disorders in childhood”, Lancet 1999; 354 : 1153 – 58 http://intramural.ni.../pubs/pub-5.pdf

[Snider2005]Snider L, Lougee L, Slattery M, Grant P, Swedo S. "Antibiotic prophylaxis with azithromycin or penicillin for childhood-onset neuropsychiatric disorders". Biol Psychiatry 57 (7): 788–92. 2005 http://intramural.ni.../pubs/pub-9.pdf

[Nicolson2000]Nicolson et al, “An Open Trial of Plasma Exchange in Childhood Onset Obsessive-compulsive Disorder Without Poststreptococcal Exacerbations. " J Am Acad Child Adolesc Psychiatry 2000, 39[10]: 1313-1315 http://www.ncbi.nlm....pubmed/11026187

[Yaddanapudi2009] K Yaddanapudi, M Hornig, R Serge, J De Miranda, A Baghban, G Villar, W I Lipkin Passive transfer of streptococcus-induced antibodies reproduces behavioral disturbances in a mouse model of pediatric autoimmune neuropsychiatric disorders associated with streptococcal infection Molecular Psychiatry August 11, 2009 doi:10.1038/mp.2009.77 http://www.nature.com/mp/journal/vaop/ncur.../mp200977a.html

[Schneider2002]Schneider R., Robinson M., Levenson J., “Psychiatric presentations of non-HIV infectious diseases: Neurocysticercosis, lyme disease, and pediatric autoimmune neuropsychiatric disorder associated with streptococcal infection”,
Psychiatric Clinics of North America, Volume 25, Issue 1, Pages 1-16 http://www.ncbi.nlm....pubmed/11912935

[Martono2007]Martono D, Church A, Giovannoni, G, “Are antibasal ganglia antibodies important and clinically useful?”, Practical Neurology, 2007; 7: 32-41 http://pn.bmj.com/co.../7/1/32.extract

[memom]

Very nice. Well presented and documented. I vote it in!

Ellie

Buster, on Dec 4 2009, 12:03 AM, said:

What is PANDAS?

PANDAS is a pediatric autoimmune disorder characterized by the dramatic onset of neuropsychiatric symptoms such as obsessions, compulsions, motor or vocal tics [Swedo1997]. PANDAS is thought to be similar to Sydenham Chorea where there is dramatic symptom exacerbation following a strep infection[Kirvan2006].

Signs and Symptoms:

Children with PANDAS must be initially diagnosed with Obsessive Compulsive disorder or a tic disorder [Swedo2004]. In addition, these children may have some or all of the following sudden onset symptoms:

• Emotional lability (e.g.,sudden unexplainable rages, fight or flight behaviors)
  
• daytime urinary frequency/enuresis
  
• Personality changes
  
• ADHD
  
• Anorexia (particularly fear of choking, being poisoned, contamination fears)
  
• Choreiform movements (e.g., milk-maid grip, fine finger playing movements in stressed stance)
  
• Age inappropriate behaviors particularly regressive bedtime fears/rituals
  
• Separation anxiety
  
• Tactile/sensory defensiveness
  
• Marked deterioration in handwriting or math skills. [Swedo1998][Moretti2006]

Diagnosis of PANDAS/OCD is generally a clinical diagnosis, marked by the sudden onset and extreme exacerbations, such as a mean increase of +18 points on the OCD CY-BOCS score during an exacerbation [Murphy2004]. The abrupt onset and remission after eradication of streptococcal infection separates the child from non-PANDAS OCD. Many parents can pinpoint a day or a week when behaviors changed [Swedo2004].

When a child has primarily vocal and motor tics, the symptoms may appear to overlap with symptoms of Tourettes Syndrome; however, the children can be differentiated by observing symptom exacerbations over time [Pavone2006]. In PANDAS children, a streptococcal infection precedes symptom exacerbation and once treated, initial exacerbations generally remit. The rapid onset with significant remission is characteristic of PANDAS.

A throat culture for Group A Beta-Hemolytic streptococcus (GABHS) at time of exacerbation onset is recommended to diagnose a pharyngeal streptococcal infection [Swedo2004]. If the culture is negative, a blood test may be able to test for streptococcal exotoxins. A common blood test is Anti-Streptolycin O; however, this test is affected by many factors and in one study over 46% of children did not have a rising ASO titer despite having colonized strep [Shet2003].

For children affected by PANDAS, a GABHS infection is considered to be the triggering event that causes an initial episode. However, as is the case with Sydenham’s Chorea, subsequent PANDAS exacerbations may be triggered by recurrent GABHS, or by other bacterial or viral infections (ear infections, sinusitis, pneumonia, meningitis, impetigo) further complicating diagnosis [Swedo1998].

Treatment:

Streptococcal infections are treated with antibiotics.

Cognitive Behavioral Therapy (CBT) and Exposure & Ritual Prevention (ERP) therapy have been shown to be effective on some children with PANDAS and to provide families with coping strategies during a PANDAS flare [Storch2006]. Caution is recommended for using SSRI's with PANDAS/OCD as there are reports of higher activation rates in such cases [Murphy2006] and there is a a lack of controlled studies showing safety and efficacy of anti-tic or anti-OCD medications (e.g., SSRI and anti-psychotics) for PANDAS children.

Several reports have shown effectiveness of immunomodulating therapy (IVIG and PEX) in combination with longer term prophylactic antibiotics, [Perlmutter1999] or longer term prophylactic antibiotics alone [Snider2005]. These treatments are still considered experimental and have several risks. Some physicians will use anti-inflammatory drugs for a short period of time to assist in diagnosis. Immunomodulating therapies are not effective for Tourettes Syndrome or other non-PANDAS OCD cases, again separating the child with PANDAS [Nicolson2000].

Getting Help:

PANDAS was only identified in 1998 and as such is a recent disease [Swedo1998]. Additional research is needed to identify the most effective treatment protocols. Taking copies of recent studies to your doctor may help them diagnose and treat your child. You may need to interview pediatricians, neurologists and immunologists. For referrals to local doctors with experience, one source is a parent’s support group at http://www.latitudes...?showtopic=3928.

Research:

PANDAS is thought to be caused by the following sequence of events in this order:

• The production by the immune system of an antibody that can interact with neuronal tissue [Kirvan2006]
  
• A failure of the immune system to suppress this antibody
  
• A breach of the blood brain barrier such that the antibody reaches neuronal tissue [Yaddanapudi2009]

All three areas have active research results and require duplication of experiments to help reach consensus in the research community.
For those interested in a brief history of PANDAS research, please see http://www.latitudes.org/forums/index.php?...amp;#entry36300

Other considerations:

Other autoimmune illnesses that may cause sudden onset OCD and other neuropsychiatric disorders include: Lyme Disease, Thyroid Disease, Celiac Disease, Lupus, Sydenham Chorea, Kawasaki’s disease, and acute Rheumatic Fever [Schneider2002]. Some children have been found to have Immunology challenges such as IgG subclass deficiencies. Children will need to be evaluated for this issue by an immunologist. In addition, while there is good evidence of anti-neuronal antibodies in PANDAS, the diagnosis remain controversial primarily due to the observations by Johns Hopkins researchers who have not been able to detect such antibodies in their research subjects [Martono2007].

References

[Swedo1997] S Swedo et al, “Identification of Children With Pediatric Autoimmune Neuropsychiatric Disorders Associated With Streptococcal Infections by a Marker Associated With Rheumatic Fever”, Am J Psychiatry 154:1, January 1997 http://ajp.psychiatr...t/154/1/110.pdf

[Kirvan2006] Kirvan CA, Swedo SE, Kurahara D, Cunningham MW, "Streptococcal mimicry and antibody-mediated cell signaling in the pathogenesis of Sydenham's chorea". 2006 Autoimmunity 39 (1): 21–9. http://www.pandasnet...NICaMKinase.pdf

[Swedo2004] Swedo SE, Leonard HL, Rapoport JL.” The pediatric autoimmune neuropsychiatric disorders associated with streptococcal infection (PANDAS) subgroup: separating fact from fiction”, Pediatrics. 2004 Apr;113(4):907-11. http://pediatrics.aa...print/113/4/907

[Moretti2008] Moretti G, Pasquini M, Mandarelli G, Tarsitani L, Biondi M (2008). "What every psychiatrist should know about PANDAS: a review". Clin Pract Epidemol Ment Health 4: 13. http://www.ncbi.nlm.nih.gov/pmc/articles/P...5-0179-4-13.pdf

[Swedo1998] Swedo SE et al., “Pediatric Autoimmune Neuropsychiatric Disorders Associated With Streptococcal Infections: Clinical Description of the First 50 Cases”, Am J Psychiatry 155:2, February 1998. http://ajp.psychiatr...print/155/2/264

[Murphy2004] Murphy TK, Muhammad S, Soto O, et al. “Detecting pediatric autoimmune neuropsychiatric disorders associated with streptococcus in children with obsessive-compulsive disorder and tics”, Biological Psychiatry, Volume 55, Issue 1, Pages 61-68, January 2004 http://www.journals.elsevierhealth.com/per...0704-2/abstract

[Pavone2006] Pavone P, Parano E, Rizzo R, Trifiletti RR (2006). "Autoimmune neuropsychiatric disorders associated with streptococcal infection: Sydenham chorea, PANDAS, and PANDAS variants". J Child Neurol 21 (9): 727-36. http://jcn.sagepub.c...stract/21/9/727

[Shet2003]Shet A, Kaplan EL, Johnson DR, Cleary PP, “Immune response to group A streptococcal C5a peptidase in children: implications for vaccine development”, J Infect Dis. 2003 Sep 15;188(6):809-17. http://www.journals..../10.1086/377700

[Storch2006]Storch EA, Murphy TK, Geffken, G et al, “Cognitive-Behavioral Therapy for PANDAS-Related Obsessive-Compulsive Disorder: Findings From a Preliminary Waitlist Controlled Open Trial”, Journal of the American Academy of Child & Adolescent Psychiatry: October 2006 - Volume 45 - Issue 10 - pp 1171-1178 http://www.ncbi.nlm....pubmed/17003662

[Murphy2006]Murphy TK, Storch EA, Strawser MS, “Selective serotonin reuptake inhibitor-induce behavioral activation in the PANDAS subtype”, Primary Psychiatry, 2006;13(8):87-89, http://mbldownloads....06PP_Murphy.pdf

[Perlmutter1999]Perlmutter SJ, Leitman SF, Garvey MA, “Therapeutic plasma exchange and intravenous immunoglobulin for obsessive-compulsive disorder and tic disorders in childhood”, Lancet 1999; 354 : 1153 – 58 http://intramural.ni.../pubs/pub-5.pdf

[Snider2005]Snider L, Lougee L, Slattery M, Grant P, Swedo S. "Antibiotic prophylaxis with azithromycin or penicillin for childhood-onset neuropsychiatric disorders". Biol Psychiatry 57 (7): 788–92. 2005 http://intramural.ni.../pubs/pub-9.pdf

[Nicolson2000]Nicolson et al, “An Open Trial of Plasma Exchange in Childhood Onset Obsessive-compulsive Disorder Without Poststreptococcal Exacerbations. " J Am Acad Child Adolesc Psychiatry 2000, 39[10]: 1313-1315 http://www.ncbi.nlm....pubmed/11026187

[Yaddanapudi2009] K Yaddanapudi, M Hornig, R Serge, J De Miranda, A Baghban, G Villar, W I Lipkin Passive transfer of streptococcus-induced antibodies reproduces behavioral disturbances in a mouse model of pediatric autoimmune neuropsychiatric disorders associated with streptococcal infection Molecular Psychiatry August 11, 2009 doi:10.1038/mp.2009.77 http://www.nature.com/mp/journal/vaop/ncur.../mp200977a.html

[Schneider2002]Schneider R., Robinson M., Levenson J., “Psychiatric presentations of non-HIV infectious diseases: Neurocysticercosis, lyme disease, and pediatric autoimmune neuropsychiatric disorder associated with streptococcal infection”,
Psychiatric Clinics of North America, Volume 25, Issue 1, Pages 1-16 http://www.ncbi.nlm....pubmed/11912935

[Martono2007]Martono D, Church A, Giovannoni, G, “Are antibasal ganglia antibodies important and clinically useful?”, Practical Neurology, 2007; 7: 32-41 http://pn.bmj.com/co.../7/1/32.extract

[mom md]

Wondeful job...do you think we could get you hired? To have someone on the inside there might be just what we need.

[Vickie]

I'm nit picking here, so bear with me...


1.I know PANADS/OCD is mentioned in paragraph form, but I think it should be in the itemized list as well. Perhaps w/ a very brief generalization of what OCD may be.

Presence of OCD (rituals, intrusive thoughts, unreasonable fears).

The stuff in the () could be altered. I'm just too tired to think clearly right now. I just view the itemized list as very important because that is what a parent will automatically go to if they visit the site.

2.I think in the treatment paragraph, the wording of proph antibiotics needs to be in its own sentence. Thta makes more of an impact. There is just so much importance in docs realizing it's okay to give long term proph antibiotics.

3. Realistically, you can include this website for doc referals, but they will never put that up.

You did a great job! Where do find the time?

[smartyjones]

wow - buster - fabulous. i am always a bit nervous to comment on your posts b/c my pea brain is just not in the same league!

for signs and symptoms i wonder if there is anything in the study literature to comment on what in my early days on this forum, someone termed "strepnoxious". it was like a lightening bolt flew through me b/c that struck such a cord. i guess it would be a part of "personality changes" but more definition would be good. b/c, for us, all of those personality changes could also be defined as a 4-year-old boy 'testing boundaries', 'in a phase' etc. even now, if i try to describe what he does, it often sounds like just normal, obnoxious young boy. i try to say it's that it's infused with this whacked energy that is just wrong.

i just recently found a homeopathic remedy while looking for one that was similiar to motrin. as i read the description, it sounded like i was writing a list of his troublesome behaviors

• "it's as if some diabolical force took possession of the brain and prevented it's functions. it causes a perfect picture of mania of a quarrelsome and obscene character. unseemly and immodest in acts. is jealous. lascivious mania, uncovers body. low, muttering speech. clingy and dependent. fears being left alone. crude behavior. loves smutty talk. immodest acts, gestures, expressions. unintelligible chatter. great hilarity, foolish laughter - does foolish things. does things to shock - such as saying doesn't love you or sticking out tongue. rage with unusual strength. strikes out at those trying to help."

[ajcire]

SmartyJones, what remedy did you find that on?



i just recently found a homeopathic remedy while looking for one that was similiar to motrin. as i read the description, it sounded like i was writing a list of his troublesome behaviors

• "it's as if some diabolical force took possession of the brain and prevented it's functions. it causes a perfect picture of mania of a quarrelsome and obscene character. unseemly and immodest in acts. is jealous. lascivious mania, uncovers body. low, muttering speech. clingy and dependent. fears being left alone. crude behavior. loves smutty talk. immodest acts, gestures, expressions. unintelligible chatter. great hilarity, foolish laughter - does foolish things. does things to shock - such as saying doesn't love you or sticking out tongue. rage with unusual strength. strikes out at those trying to help."

[/quote]

[smartyjones]

it's called hyoscyamus niger (henbane)

sorry - don't want to derail original post too much - just wanted to get the behavior symptom change across.

erica240- i'll pm you some references.

[sww817]

I agree with Vickie about listing what OCD can look like. But I am not sure how to word it. I never really thought my child had OCD until I talked to Dr. L and she explained to me what it looked like in a small child. I was looking for the hand washing, checking doors, counting, etc... My child had mild versions of some of these things but it never hit me as OCD until she put the pieces together for me.

Awesome work Buster! You are definitely a wealth of knowledge for me on this board!

[Buster]

sww817, on Dec 4 2009, 07:06 AM, said:

I agree with Vickie about listing what OCD can look like.

I'm fine with putting a definition of OCD on the list. PANDAS actually requires a DSM IV diagnosis of OCD or a diagnosis of tic disorder. Swedo defined the term as being a subset of those two diseases. Let me put those OCD and tics on the list at the top -- and see if that helps. It's in the sentence before.

While it is likely that sub clinical OCD symptoms exist in a lot of PANDAS kids, technically, they require a diagnosis.

Buster

[sww817]

That makes sense to me. It is hard to cover all of the bases with this, I am sure. I am just thinking more for the parents that are looking to diagnose their children before they get to the "right" doctors.

[smartyjones]

Buster, on Dec 4 2009, 10:50 AM, said:

PANDAS actually requires a DSM IV diagnosis of OCD or a diagnosis of tic disorder. Swedo defined the term as being a subset of those two diseases.
While it is likely that sub clinical OCD symptoms exist in a lot of PANDAS kids, technically, they require a diagnosis.
Buster

i see what you're saying but do find that unfortunate. is that the way any disease or disorder is defined or is it for research study purposes?

i say it's unfortunate b/c we never actually had an OCD diagnosis and it could have been years in coming b/c he was only 4. only due to an astute behavior therapist who said to me, 'what you're describing sounds like OCD but he's awfully young - there is this rare, unheard of thing PANDAS' - we had positive titers and culture - got on abx and had a short full remission; 2nd almost full remission with 2nd abx. if not for that, we would have had a long, drawn-out better parenting, behavior, OCD, etc hamster circle ride that so many of have experienced. is there anything we can do about that?

am i trying to conquer too many windmills at once? not at all trying to deface what you're attempting to do!

[Ellen]

Buster, I did not get a chance to look everything over that carefully yet, but what I saw looks great. I wanted to mention that when we saw Dr. Trifiletti recently and told him about my son's exacerbation of PANDAS from vaccines, he mentioned that maybe parents need to be advised to proceed with caution when it comes to making decisions about vaccines. What about adding something like this:

"There have been reported cases of children with PANDAS whose symptoms worsened following vaccines. Parents are advised to proceed with caution when making decisions about whether or not to vaccinate a child with PANDAS."

I know this may be opening a whole can of worms, but if I had seen something like this before vaccinating my son two years ago, I would have not done the vaccines and I know he would be in a much better place right now. I want to give other parents the opportunity that I never had, to be aware that there may be a risk and make an informed decision.

Buster, on Dec 4 2009, 10:50 AM, said:

sww817, on Dec 4 2009, 07:06 AM, said:

I agree with Vickie about listing what OCD can look like.

I'm fine with putting a definition of OCD on the list. PANDAS actually requires a DSM IV diagnosis of OCD or a diagnosis of tic disorder. Swedo defined the term as being a subset of those two diseases. Let me put those OCD and tics on the list at the top -- and see if that helps. It's in the sentence before.

While it is likely that sub clinical OCD symptoms exist in a lot of PANDAS kids, technically, they require a diagnosis.

Buster

[Vickie]

I'm not saying it has to be a long defintion. I suppose a reference to the NIMH for OCD may be sufficient, but I have not looked at that.

I didn't remember reading that a DSM IV diagnosis was required in the original definition. I'll have to look at that. It would nice if that could be altered over time. I'd hate for a doctor to say they cannot give abx until you see a psych for a eval if a strep test comes back neg. It takes months to get into a psych if you are a new patient.

My son was diagnosed w/ PANDAS w/o seeing a psychiatrist. I can guarantee his score would have been 30+.

Buster, on Dec 4 2009, 10:50 AM, said:

sww817, on Dec 4 2009, 07:06 AM, said:

I agree with Vickie about listing what OCD can look like.

I'm fine with putting a definition of OCD on the list. PANDAS actually requires a DSM IV diagnosis of OCD or a diagnosis of tic disorder. Swedo defined the term as being a subset of those two diseases. Let me put those OCD and tics on the list at the top -- and see if that helps. It's in the sentence before.

While it is likely that sub clinical OCD symptoms exist in a lot of PANDAS kids, technically, they require a diagnosis.

Buster

[Vickie]

oops. Should have looked at the revised edition. You supplied a brief explanation.

[EAMom]

I wonder if there is a way to sneak in something about Chronic PANDAS....reading the summary, you get the impression (which is, unfortunately consistent with most of the literature out there) that PANDAS is always dramatic and acute in onset and then (relatively quickly) goes completely away with a course of antibiotics...either "on" or "off" and the child is completely normal between episodes.

I just wonder if there are parents that will read the summary and think "My child's onset wasn't abrupt enough, so it can't be PANDAS". ???? Esp. those that have kids been affected since early childhood.

The experience of many on this forum has been that pandas (tics, mood issues, adhd) can take on a more insidious chronic form (if not identified and treated) ...these are the kids that were affected from an earlier age and received sets of "alphabet soup" diagnoseses throughout many years. Additionally, there isn't the "waning" associated with PANDAS (because the child is never appropriately treated).

Dr. Trifiletti (and the Italians) briefly discuss a "chronic PANDAS variant" in this paper http://jcn.sagepub.c...stract/21/9/727. They even state that this might be the more common form of this disease!