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Buster

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in PANS / PANDAS (Lyme included)

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ajcire Experienced

ajcire

Posted
Posted

I'm not sure if you had frequent need or urge to urinate but I know that while I was piecing this together and struggling with whether or not the not so obvious behaviorial things I saw were related it helped me when I saw frequent urination on the list because that was something concrete that I had observed.

Suzan Veteran

Suzan

Posted
Posted
I'm not sure if you had frequent need or urge to urinate but I know that while I was piecing this together and struggling with whether or not the not so obvious behaviorial things I saw were related it helped me when I saw frequent urination on the list because that was something concrete that I had observed.

 

I would like to see a complete list of symptoms that we've compiled somewhere. It's the only thing I've wished for but could not find on the pandasnetwork website. I'll mention it to Diana. When we originally heard about PANDAS, since my girls did not have tourettes or tics and I didn't know much about OCD and didn't think they had it, I didn't think they had PANDAS.

 

Susan

EAMom Grand Master

EAMom

Posted
Posted
I'm not sure if you had frequent need or urge to urinate but I know that while I was piecing this together and struggling with whether or not the not so obvious behaviorial things I saw were related it helped me when I saw frequent urination on the list because that was something concrete that I had observed.

 

Yes! That is an important symptom...sometimes that is the first/only symptom.

Night- time bed wetting and/or day- time urinary frequency

Buster Experienced

Buster

Posted
  • Author
Posted

A revised version, see what you think...

 

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
. PANDAS is thought to be similar to Sydenham Chorea where there is dramatic symptom exacerbation following a strep infection
.

Signs and Symptoms:

Children with PANDAS must be initially diagnosed with Obsessive Compulsive disorder or a tic disorder
. 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.

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
. 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
.

 

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
. 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
. 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
.

 

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
.

Treatment:

Streptococcal infections are treated with antibiotics.

 

Cognitive Behavioral Therapy (CBT) has been shown to be effective on some children with PANDAS and to provide families with coping strategies during a PANDAS flare
. Caution is recommended for using SSRI's with PANDAS/OCD as there are reports of higher activation rates in such cases
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,
or longer term prophylactic antibiotics alone
. 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
.

Getting Help:

PANDAS was only identified in 1998 and as such is a recent disease
. 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
.

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

  • A failure of the immune system to suppress this antibody

  • A breach of the blood brain barrier such that the antibody reaches neuronal tissue

All three areas have active research results and require duplication of experiments to help reach consensus in the research community.

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
. 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
.

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

 

[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.

 

[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.

 

[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.

 

[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.

 

[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

 

[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.

 

[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.

 

[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

 

[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,

 

[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

 

[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

 

[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

 

[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

 

[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

 

[Martono2007]
Martono D, Church A, Giovannoni, G, “Are antibasal ganglia antibodies important and clinically useful?”, Practical Neurology, 2007; 7: 32-41

peglem Grand Master

peglem

Posted
Posted

I love it!

What do you think of these additions in bold:

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 or being poisoned)

* 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]

Buster Experienced

Buster

Posted
  • Author
Posted
I love it!

What do you think of these additions in bold:

 

modifed.... Perhaps I'll pull it out to it's own topic once we beat on it a bit more. Every claim needs foundation in a research paper. I have well over 300 papers and so am trying to keep it short and hopefully easy to read.

momofgirls Community Regular

momofgirls

Posted
Posted

That's awesome Buster. Iam totally cluesless as to how to get the attention of the NIH. I've written to Swedo a couple of times myself...not that I ever expected a response but thought it was worth a shot. I find it very disturbing that most doctors rule out PANDAS if titers are not elevated. I wrote pandas off for my daughter from the start because her strep tests were all normal. Then if a doctor is willing to try a course of abx and no miracle is seen, again they rule it out. I really think it was the steroid burst that made the difference for us. Somehow it would be nice if doctors knew enough to use that as a possible diagnostic tool.

Buster, what about getting the help of someone like dr k or dr trifiletti and getting your letter in the right hands for review? Just a thought.

I'm probably opening a dangerous topic here where there is lots of energy but not much control... but...

 

I've been frustrated by sections on the NIMH website that eventually conclude that PANDAS should be treated the same way as non-PANDAS OCD. This is just not in keeping with the current research and I worry is doing more damage than good -- where a child has an easier time being prescribed SSRIs and atypical anti-psychotics but can't get a 3 week trial of antibiotics.

 

I'm working on another angle recommending that NIMH focus on the auto-immune aspect of PANDAS rather than the streptococcal aspect of PANDAS. I think that NIMH needs to focus on the research indicating treatment and symptoms while letting the research continue on pathogenesis.

 

Here's a start...

 

To NIMH director:

 

In reading the NIMH website regarding PANDAS, I strongly disagree with the wording of the section regarding the recommended treatment for children with PANDAS.

 

In this section, labeled “treatment options for children with PANDAS,” the website refers to a recent study (without citation) indicating that combined CBT and SSRI medication is the best treatment for OCD. Assuming this is referring to March
et al
(2007) this study did not recruit patients matching the PANDAS sub-type. Given that the NIMH research is indicating a different pathogenesis for PANDAS there is insufficient evidence to state that SSRIs are appropriate for children with PANDAS.

 

Indeed, in 2006, Murphy et al in “Selective Serotonin Reuptake Inhibitor-Induced Behavioral Activation in the PANDAS Subtype” indicate that there is a high potential for increased behavioral activation at common dosing of SSRIs.

 

The recent research by Kirvan and Cunningham (2003, 2006) support the pathogenesis of an auto-antibody interfering with neuronal signaling and that remission of symptoms comes from the decline in the antibody.

 

Yaddanapudi ‘s research (2009) on passive transfer also indicates that it is antibodies that are causing behavioral change.

 

Given the black-label warnings on SSRIs, the increased activation level on SSRIs for PANDAS children, and the increasing evidence that symptoms are due to interference of antibodies and not to levels of serotonin or dopamine, it is improper to recommend SSRIs without a very clear warning regarding activation and the symptoms of activation.

 

Buster

thereishope Grand Master

thereishope

Posted
Posted

I know PANADS/OCD is mentioned in the pargraph after the list of symptoms, but I think it should be in the itemized list as well.

 

A revised version, see what you think...

 

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
. PANDAS is thought to be similar to Sydenham Chorea where there is dramatic symptom exacerbation following a strep infection
.

Signs and Symptoms:

Children with PANDAS must be initially diagnosed with Obsessive Compulsive disorder or a tic disorder
. 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.

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
. 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
.

 

 

momaine Experienced

momaine

Posted
Posted

This is fantastic! A big thank you to those of you who have given your time and energy to make this disorder known. I am still struggling with the day to day care of my dd. This is invaluable.

 

A revised version, see what you think...

 

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
. PANDAS is thought to be similar to Sydenham Chorea where there is dramatic symptom exacerbation following a strep infection
.

Signs and Symptoms:

Children with PANDAS must be initially diagnosed with Obsessive Compulsive disorder or a tic disorder
. 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.

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
. 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
.

 

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
. 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
. 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
.

 

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
.

Treatment:

Streptococcal infections are treated with antibiotics.

 

Cognitive Behavioral Therapy (CBT) has been shown to be effective on some children with PANDAS and to provide families with coping strategies during a PANDAS flare
. Caution is recommended for using SSRI's with PANDAS/OCD as there are reports of higher activation rates in such cases
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,
or longer term prophylactic antibiotics alone
. 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
.

Getting Help:

PANDAS was only identified in 1998 and as such is a recent disease
. 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
.

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

  • A failure of the immune system to suppress this antibody

  • A breach of the blood brain barrier such that the antibody reaches neuronal tissue

All three areas have active research results and require duplication of experiments to help reach consensus in the research community.

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
. 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
.

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

 

[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.

 

[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.

 

[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.

 

[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.

 

[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

 

[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.

 

[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.

 

[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

 

[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,

 

[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

 

[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

 

[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

 

[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

 

[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

 

[Martono2007]
Martono D, Church A, Giovannoni, G, “Are antibasal ganglia antibodies important and clinically useful?”, Practical Neurology, 2007; 7: 32-41

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