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JenMcK

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Posts: 513
Reply with quote  #1 
Who I can order a new set of those tiny white noise generators through.  I was told I have to order them through an audiologist.  Dr. Olsson is now retired so he's out of the question.  Does anyone know of anyone else in the San Diego area?  Thank you.

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~~~~ Jen ~~~~
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DrNagler

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Posts: 218
Reply with quote  #2 
Debbie Abel
858-485-7870

smn

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JenMcK

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Posts: 513
Reply with quote  #3 
Thank you.  So she can order me a set of white noise generators? 

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~~~~ Jen ~~~~
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DrNagler

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Posts: 218
Reply with quote  #4 
Make an appointment to see her.  Explain your problem.  Let her walk you through the options.

I've known Debbie Abel for maybe a dozen years.  She's one of the best tinnitus/hyperacusis audiologists around.  Recently moved to the San Diego area.

smn

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JenMcK

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Posts: 513
Reply with quote  #5 
Ok, thanks.  I hope she can help me get a new set of white noise generators.  Those things were great.

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~~~~ Jen ~~~~
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JenMcK

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Posts: 513
Reply with quote  #6 
I just need help with my misophonia, and hopefully she can help me with that.  I know she helps people with hyperacusis and tinnitus, but what about misophonia?  I want to be able to hear sounds without them bothering me so much.  I feel such rage when I hear bothersome sounds.  I have so much rage, I want to punch people (although I never have), and destroy things. 

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~~~~ Jen ~~~~
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DrNagler

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Posts: 218
Reply with quote  #7 
You have me a little confused now.  What exactly did you use the white noise generators for?  (Actually, more properly called broad band sound generators.)

smn

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DrNagler

Registered:
Posts: 218
Reply with quote  #8 
The devices you describe (GHI Tranquil ITE) are not typically used for misophonia - but if they help you with yours, that's all that matters.  I am sure than Debbie Abel can fit you with a pair.

Here's a photo of the GHI Tranquil ITE:

Click here

smn
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JenMcK

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Posts: 513
Reply with quote  #9 
Yes I know they're not typically used for misophonia, but what is?  All of these terms confuse me.

__________________
~~~~ Jen ~~~~
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DrNagler

Registered:
Posts: 218
Reply with quote  #10 
Jen, it gets a little complex here.  Misophonia is a term coined by Dr. Pawel Jastreboff.  It refers to an aversive response to sound that is mediated through the limbic-autonomic axis.  As a conditioned response, misophonia is a learned response that can in theory be unlearned.  The protocols most commonly used to do so involve pairing the stimulus resulting in the aversive response with another stimulus, one that evokes a pleasurable response, the idea being that over time the sound (or sounds) evoking the aversive response will evoke a more neutral response.

That's the theory.  In practice it can frequently be more challenging and can even occasionally require the assistance of a therapist to get to the root of why the aversive response developed in the first place.

But you are fortunate in that through the use of GHI Tranquil ITE broad band sound generators, you have been able to find a way to address the immediate challenge.  Thus you have found a way to achieve short-term relief that leaves you the option of exploring ways to address the conditioned response at some point in the future should you so choose.

GHI (General Hearing Instruments, Inc.) is a company that develops and manufactures high quality reliable devices that are very reasonably priced.  In addition to the Tranquil GTE for tinnitus and hyperacusis they make a barely visible OTE unit with clear tubing that produces the same soothing broad band sound.  Here's what it looks like (if you can find it!):
 
Click here 

Anyway, go see Debbie - and feel free to show her this thread.  (Give her my regards, by the way.  She's on my "hero" list!)

smn

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JenMcK

Registered:
Posts: 513
Reply with quote  #11 
And I think I have tinnitus now, or something similar to it.  I have a constant sound in my ears, it's not the eeeeeeeeeeeeeee sound, but it's similar.  It's starting to get very annoying.  Whatever it is, I think it was caused by wearing earplugs too much for too many years.  The problem is that I wore earplugs almost constantly for 15 or 16 years without knowing about how they could cause further harm.  I never knew until way after the fact.


__________________
~~~~ Jen ~~~~
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saab1216

Registered:
Posts: 152
Reply with quote  #12 

Jen! Why did you wear ear plugs? They could very well make your condition worse with misophonia! You need sound enrichment. How loud is your tinnitus? I do have it in my right ear but it isnt so bad now after using wearable sound gens for over a year now. Maybe they will help you too!

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Debbie

Registered:
Posts: 1,512
Reply with quote  #13 

Dr. Nagler said,

 

"Jen, it gets a little complex here.  Misophonia is a term coined by Dr. Pawel Jastreboff.  It refers to an aversive response to sound that is mediated through the limbic-autonomic axis.  As a conditioned response, misophonia is a learned response that can in theory be unlearned.  The protocols most commonly used to do so involve pairing the stimulus resulting in the aversive response with another stimulus, one that evokes a pleasurable response, the idea being that over time the sound (or sounds) evoking the aversive response will evoke a more neutral response.

That's the theory.  In practice it can frequently be more challenging and can even occasionally require the assistance of a therapist to get to the root of why the aversive response developed in the first place."

 

 

 

Dear Dr. Nagler,

 

You are explaining to Jen the definition of 'misophonia,' and suggesting that she bring this information with her as she seeks treatment.

 

Your comments bring up some questions for me and I would be interested in your answers to them.

 

1. What clinical evidence to you draw from to state that the problems Jen has with the sounds of certain consonants fundamentally result from learning/conditioning?

 

2. Do you attribute the similar difficulties many here report with eating sounds to also fundamentally be due to learning/conditioning?

 

3.  Are you familiar with the etiologies, histories and symptomologies that those with these challenges typically report: 

* sudden onset during childhood to adolescence

* a sense being triggered instantaneously and involuntarily

* extreme emotional experience that is always unpleasant  

* insight into the senselessness of the symptoms

* insight into the benefits of stopping the symptoms and a history of repeated attempts to do so and of seeking outside help

* consistent control of the secondary, behavioral response (never actually hitting someone)  

* a sense of the mental and emotional symptoms being inorganic to, or uncharacteristic of, the individual's basic personality  

* distractibility with input from more than one sense, such as from visual cues in addition to auditory cues

* identical triggers shared by subsets of individual strangers with the condition as if each could tell the others' stories despite geographic and gender differences

* no clearly identified link, despite attempts to identify one and in some cases hypnotherapy, between the time of onset and an emotional life event  

* a personal and/or family history of diagnosed or suspected ADD, OCD or Tourettes

 

3. Are you aware that the above features are shared by OCD and Tourettes?

 

4. Did you know that one explanation for the sudden and extreme onsets of some ADD, OCD and Tourettes is that they are expressions of the toxic

effects of auto-immune responses within specific brain regions to streptococcal bacteria,

and that these effects may be greater for an individual (genetic links being explored) and/or reinforced through repeated exposures to the pathogen,

so that the brains of some may remain permanently affected? 

 

5. After reading the article below, does it seem plausible to you 

that the symptoms of 'misophonia' I have mentioned here

may be variants of OCD-spectrum or related conditions

reflecting organic changes in the brain?

Is it plausible that adult-onset symptoms, or exacerbations of historical childhood symptoms, might also be?

 

Thank you for your responses to my questions,

 

Debbie

 

 

 

PANDAS

Paediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus.

Have you noticed how different your child has been acting ever since he had that sore throat? He seems hyperactive, moody and keeps blinking his eyes. He also has become very particular about the way he does certain things. His teachers say that he's not paying attention in class and they're having trouble reading his handwriting.

Your child may have developed what the medical community has named PANDAS. Although rare, PANDAS stands for Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcus. What does all that mean? Basically, it means that when the body's defences are trying to attack the Streptococcal bacteria causing the sore throat, there is some degree of mistaken identity and it also attacks some parts of the brain.

 

The autoimmune attack is thought to occur on closely related parts of the brain, causing a range of behavioural and emotional problems. When first discovered PANDAS was linked to obsessive-compulsive disorder, Tics and Tourettes syndrome. Mostly because these abnormal behaviours are overt and easily recognised.

Tics can be uncontrollable movements, such as eye-blinking or shoulder-shrugging, or automatic noises such as throat clearing, grunting or saying certain words repeatedly.  More recently PANDAS has been associated with a wider range of related behaviours. Affected children can have any combination of the following symptoms:

  • Cognitive inflexibility, difficult to reason with, as if stuck on an idea,
  • Obsessive/repetitive/compulsive argumentative behaviours,
  • TICS (repetitive vocalisations of body movements),
  • Tourettes Syndrome,
  • Attention deficits and oppositional/defiant behaviours.

The bacteria associated with this disorder are known as Group A Beta-Haemolytic Streptococcus (GABHS). They are also the bacteria associated with rheumatic fever, a disease characterised by heart and joint inflammation that can occur after an untreated strep throat. A type of rheumatic fever with mostly neurological symptoms is Sydenham's chorea (also known as St. Vitus Dance). Symptoms of Sydenham chorea may occur several weeks to months after the infection and may include poor or diminished muscle control and tone, poor coordination and awkward movements of the face, body, arms and legs. 


Children may also have changes in their behaviours. Generally, after several weeks, all or most of the symptoms go away and may return if the child develops another Strep throat infection (detected or undetected). However, in a number of cases recent outbreaks of rheumatic fever, signs of a recent sore throat were absent or minimal. To prevent relapses, doctors will treat patients with a history of rheumatic fever (including Sydenham chorea) with a daily dose of antibiotics as a preventative measure against future infections.

 

 

 

Typically, a child with undiagnosed PANDAS may be taken to the Psychologist and/or Paediatrician for treatment of an onset or exacerbation of ADHD symptoms, oppositional behaviours or OCD. Stimulant or anti-depressant medication may be prescribed and/or a behavioural intervention or counselling initiated. As the infection passes and the strep antibodies reduce, the symptoms gradually subside and parents and clinicians believe that the intervention was successful. However then there is another strep infection, the symptoms return and the process is repeated. The problem is that the brain is being continuously damaged by the repeated attacks by streptococcus antibodies; and after each attack the recovery of damaged brain tissues may not be as complete as we would hope. Eventually the child may develop a chronic psychiatric disorder



At the clinic, we check for evidence of a recent strep infection by ordering a special blood test that looks for Streptococcus antibodies (Serology for ASOT and AntiDNAseB). Evidence of a recent streptococcal infection may or may not mean that your child has PANDAS. Many children, up to 30 percent, will show evidence by blood test of a recent streptococcal infection. So connecting symptoms with a streptococcal infection will not necessarily mean that the infection was the cause of the child's behaviour change. PANDAS will not develop in every child with a strep infection.

 

Research is currently being done at the NIMH to find out whether the select few are genetically predisposed, or perhaps were exposed to a special strain of Strep. But for now, until we can determine the exact cause and catch it before it acts, have your child properly treated. When a sore throat persists, seek medical attention from a doctor experienced in PANDAS. If your child does have GABHS strep throat, as determined by a throat culture, the symptoms of rheumatic fever could be prevented if a course of antibiotics is taken within nine days of the onset of the infection. We believe that it is important to put the child on specific nutrient supplements that target brain structures and the right probiotics (beneficial bacteria) to replace the ones that antibiotics kill in the gut.

 

Watch for changes in the child's behaviours that are unexplained or out of character, such as mood changes, clinginess, hyperactivity, inattentiveness, obsessive thoughts, checking behaviours, repetitive noises or vocalisations, poor muscle control or coordination, ants in the pants movements or even new-onset bedwetting. At this time, this constellation of symptoms is under research investigation and it is not recommended that children with behaviour symptoms receive long-term treatment with antibiotics.

PANDAS treatment at the Behavioural Neurotherapy Clinic
 

When PANDAS is suspected due to the diagnostic criteria being met, we hypothesise that a short period on antibiotics (every time an episode of GABHS infection is confirmed) concurrent with and followed by ongoing nutrient supplementation to promote optimum Brain cell plasma membranes and Brain tissues may help brain recovery and protect against the full development of serious chronic psychiatric disorders.

Based on evidence that there is a recovery period (as the GABHS antibodies reduce to normal) after the strep infection is over, we hypothesise that helping the brain recover with nutrients may reduce vulnerability to further damage by the strep antibodies. This is a commonsense approach to a medical problem with no proven medical solutions as yet.

The case studies that we have gathered to-date at the clinic are encouraging. Results of this approach show significant changes towards normal in QEEG brainmapping and improvement in behaviours.
Jacques Duff presented this data at the International Society for Neuronal Regulation Scientific Seminar in Sydney (Sept. 2004)

(Jacques Duff and Dr. Joe Nastasi)

Is there a test for PANDAS?

No. The diagnosis of PANDAS is a clinical diagnosis, which means that there are no lab tests that can diagnose PANDAS. Instead clinicians use 5 diagnostic criteria for the diagnosis of PANDAS (see below). At the present time the clinical features of the illness are the only means of determining whether or not a child might have PANDAS.

What are the diagnostic criteria for PANDAS?

Pandas is diagnosed if there is an episodic history of the following symptoms associated with strep infections.

  • Presence of Obsessive-compulsive disorder and/or a tic disorder, ADHD symptoms or oppositional behaviours 
  • Association with neurological abnormalities (motor hyperactivity, or adventitious  movements, such as choreiform movements)
  • Paediatric onset of symptoms (age 3 years to puberty)
  • Episodic course of symptom severity. (symptoms come and go)
  • Association with group A Beta-hemolytic streptococcal infection (GABHS)
  • GABHS evidenced by either a positive throat culture for strep or positive for streptococcus serology (ASOT or AntiDNAse-B)
  • A history of Scarlet Fever or Rheumatic fever

What is an episodic course of symptoms?

Children with PANDAS seem to have dramatic ups and downs in their OCD and/or tic severity. Tics or OCD which are almost always present at a relatively consistent level do not represent an episodic course. Many children with OCD or tics have good days and bad days, or even good weeks and bad weeks. However, patients with PANDAS have a very sudden onset or worsening of their symptoms, followed by a slow, gradual improvement. If they get another strep. infection, their symptoms suddenly worsen again. The increased symptom severity usually persists for at least several weeks, but may last for several months or longer. The tics or OCD then seem to gradually fade away, and the children often enjoy a few weeks or several months without problems. When they have another strep. throat infection the tics or OCD or associated behaviours return just as suddenly and dramatically as they did previously.

My child has had strep. throat before, and he has tics and/or OCD. Does that mean he has PANDAS?

No. Many children have OCD and/or tics, and almost all school aged children get strep. throat at some point in their lives. Only when a child has a very episodic course of tics and/or OCD and seems to have strep. throat shortly before or at the time of a dramatic worsening of symptoms does this indicate the possibility of PANDAS.

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

An elevated anti-strep. titer (such as an ASOT or an AntiDNAse-B) means the child has had a strep. infection sometime within the past few months, and his body created antibodies to fight the streptococcus bacteria. This is not bad. In fact it is a normal, healthy response-- all healthy people create antibodies to fight infections. 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. This means that an elevated anti-streptococcal titer may have nothing to do with the present worsening symptoms, but instead indicates a long-since healed strep. throat.

Could an adult or teenager have PANDAS? 

By definition, PANDAS is a paediatric disorder. It is possible that adolescents and adults may have immune mediated OCD. Although the research studies at the NIMH are restricted to PANDAS, there are a number of reported cases in the medical literature of adolescent and adult onset OCD and TICS with GABHS and even non-Haemolitic streptococcus infections.

Will Penicillin treat PANDAS? 

No. Penicillin and other antibiotics kill streptococcus and other types of bactera. The antibiotics treat the sore throat or pharyngitis caused by the strep., by getting rid of the bacteria. However, in PANDAS, it appears that antibodies produced by the body in response to the strep. infection are the cause of the problem, not the bacteria themselves. Therefore one could not expect antibiotics such as penicillin to treat the symptoms of PANDAS. 

Current research at the NIMH has been investigating the use of antibiotics as a form of prophylaxis or prevention of future problems. It is important to note however, that the success of antibiotic prophylaxis for PANDAS patients has not yet been proven. Until its usefulness is determined, penicillin and other antibiotics should NOT be used as long-term treatment for OCD and tics.


__________________
Breathing is good.
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DrNagler

Registered:
Posts: 218
Reply with quote  #14 
Debbie posted:

Dear Dr. Nagler,

 

You are explaining to Jen the definition of 'misophonia,' and suggesting that she bring this information with her as she seeks treatment.


...............

 

Jen asked for the name of an audiologist in San Diego who could provide her with as pair of "white noise generators," and I gave it to her.  I then suggested that she explain her problem to the audiologist, who - after evaluating her - would be able to walk her through treatment options.  Then Jen said that what she really wanted was help with misophonia, but added that the term misophonia was confusing to her.  Misophonia is a diagnosis that should be made only after a thoroughly evaluation.  I defined misophonia to clarify it for Jen since she was confused ... and again suggested that she go to the audiologist to evaluate her and review treatment options.  I added that she could bring a copy of the thread if she wanted to.  Does Jen have misophonia?  I am not in a position to say one way or the other.


..............

Your comments bring up some questions for me and I would be interested in your answers to them.

 

1. What clinical evidence to you draw from to state that the problems Jen has with the sounds of certain consonants fundamentally result from learning/conditioning?

 

2. Do you attribute the similar difficulties many here report with eating sounds to also fundamentally be due to learning/conditioning?

 

3.  Are you familiar with the etiologies, histories and symptomologies that those with these challenges typically report: 

* sudden onset during childhood to adolescence

* a sense being triggered instantaneously and involuntarily

* extreme emotional experience that is always unpleasant  

* insight into the senselessness of the symptoms

* insight into the benefits of stopping the symptoms and a history of repeated attempts to do so and of seeking outside help

* consistent control of the secondary, behavioral response (never actually hitting someone)  

* a sense of the mental and emotional symptoms being inorganic to, or uncharacteristic of, the individual's basic personality  

* distractibility with input from more than one sense, such as from visual cues in addition to auditory cues

* identical triggers shared by subsets of individual strangers with the condition as if each could tell the others' stories despite geographic and gender differences

* no clearly identified link, despite attempts to identify one and in some cases hypnotherapy, between the time of onset and an emotional life event  

* a personal and/or family history of diagnosed or suspected ADD, OCD or Tourettes

 

3. Are you aware that the above features are shared by OCD and Tourettes?

 

4. Did you know that one explanation for the sudden and extreme onsets of some ADD, OCD and Tourettes is that they are expressions of the toxic

effects of auto-immune responses within specific brain regions to streptococcal bacteria,

and that these effects may be greater for an individual (genetic links being explored) and/or reinforced through repeated exposures to the pathogen,

so that the brains of some may remain permanently affected? 

 

5. After reading the article below, does it seem plausible to you 

that the symptoms of 'misophonia' I have mentioned here

may be variants of OCD-spectrum or related conditions

reflecting organic changes in the brain?

Is it plausible that adult-onset symptoms, or exacerbations of historical childhood symptoms, might also be?

 

Thank you for your responses to my questions,

 

Debbie

 

 

 

PANDAS

Paediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus.

Have you noticed how different your child has been acting ever since he had that sore throat? He seems hyperactive, moody and keeps blinking his eyes. He also has become very particular about the way he does certain things. His teachers say that he's not paying attention in class and they're having trouble reading his handwriting.

Your child may have developed what the medical community has named PANDAS. Although rare, PANDAS stands for Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcus. What does all that mean? Basically, it means that when the body's defences are trying to attack the Streptococcal bacteria causing the sore throat, there is some degree of mistaken identity and it also attacks some parts of the brain.

 

The autoimmune attack is thought to occur on closely related parts of the brain, causing a range of behavioural and emotional problems. When first discovered PANDAS was linked to obsessive-compulsive disorder, Tics and Tourettes syndrome. Mostly because these abnormal behaviours are overt and easily recognised.

Tics can be uncontrollable movements, such as eye-blinking or shoulder-shrugging, or automatic noises such as throat clearing, grunting or saying certain words repeatedly.  More recently PANDAS has been associated with a wider range of related behaviours. Affected children can have any combination of the following symptoms:

  • Cognitive inflexibility, difficult to reason with, as if stuck on an idea,
  • Obsessive/repetitive/compulsive argumentative behaviours,
  • TICS (repetitive vocalisations of body movements),
  • Tourettes Syndrome,
  • Attention deficits and oppositional/defiant behaviours.

The bacteria associated with this disorder are known as Group A Beta-Haemolytic Streptococcus (GABHS). They are also the bacteria associated with rheumatic fever, a disease characterised by heart and joint inflammation that can occur after an untreated strep throat. A type of rheumatic fever with mostly neurological symptoms is Sydenham's chorea (also known as St. Vitus Dance). Symptoms of Sydenham chorea may occur several weeks to months after the infection and may include poor or diminished muscle control and tone, poor coordination and awkward movements of the face, body, arms and legs. 


Children may also have changes in their behaviours. Generally, after several weeks, all or most of the symptoms go away and may return if the child develops another Strep throat infection (detected or undetected). However, in a number of cases recent outbreaks of rheumatic fever, signs of a recent sore throat were absent or minimal. To prevent relapses, doctors will treat patients with a history of rheumatic fever (including Sydenham chorea) with a daily dose of antibiotics as a preventative measure against future infections.

 

 

 

Typically, a child with undiagnosed PANDAS may be taken to the Psychologist and/or Paediatrician for treatment of an onset or exacerbation of ADHD symptoms, oppositional behaviours or OCD. Stimulant or anti-depressant medication may be prescribed and/or a behavioural intervention or counselling initiated. As the infection passes and the strep antibodies reduce, the symptoms gradually subside and parents and clinicians believe that the intervention was successful. However then there is another strep infection, the symptoms return and the process is repeated. The problem is that the brain is being continuously damaged by the repeated attacks by streptococcus antibodies; and after each attack the recovery of damaged brain tissues may not be as complete as we would hope. Eventually the child may develop a chronic psychiatric disorder



At the clinic, we check for evidence of a recent strep infection by ordering a special blood test that looks for Streptococcus antibodies (Serology for ASOT and AntiDNAseB). Evidence of a recent streptococcal infection may or may not mean that your child has PANDAS. Many children, up to 30 percent, will show evidence by blood test of a recent streptococcal infection. So connecting symptoms with a streptococcal infection will not necessarily mean that the infection was the cause of the child's behaviour change. PANDAS will not develop in every child with a strep infection.

 

Research is currently being done at the NIMH to find out whether the select few are genetically predisposed, or perhaps were exposed to a special strain of Strep. But for now, until we can determine the exact cause and catch it before it acts, have your child properly treated. When a sore throat persists, seek medical attention from a doctor experienced in PANDAS. If your child does have GABHS strep throat, as determined by a throat culture, the symptoms of rheumatic fever could be prevented if a course of antibiotics is taken within nine days of the onset of the infection. We believe that it is important to put the child on specific nutrient supplements that target brain structures and the right probiotics (beneficial bacteria) to replace the ones that antibiotics kill in the gut.

 

Watch for changes in the child's behaviours that are unexplained or out of character, such as mood changes, clinginess, hyperactivity, inattentiveness, obsessive thoughts, checking behaviours, repetitive noises or vocalisations, poor muscle control or coordination, ants in the pants movements or even new-onset bedwetting. At this time, this constellation of symptoms is under research investigation and it is not recommended that children with behaviour symptoms receive long-term treatment with antibiotics.

PANDAS treatment at the Behavioural Neurotherapy Clinic
 

When PANDAS is suspected due to the diagnostic criteria being met, we hypothesise that a short period on antibiotics (every time an episode of GABHS infection is confirmed) concurrent with and followed by ongoing nutrient supplementation to promote optimum Brain cell plasma membranes and Brain tissues may help brain recovery and protect against the full development of serious chronic psychiatric disorders.

Based on evidence that there is a recovery period (as the GABHS antibodies reduce to normal) after the strep infection is over, we hypothesise that helping the brain recover with nutrients may reduce vulnerability to further damage by the strep antibodies. This is a commonsense approach to a medical problem with no proven medical solutions as yet.

The case studies that we have gathered to-date at the clinic are encouraging. Results of this approach show significant changes towards normal in QEEG brainmapping and improvement in behaviours.
Jacques Duff presented this data at the International Society for Neuronal Regulation Scientific Seminar in Sydney (Sept. 2004)

(Jacques Duff and Dr. Joe Nastasi)

Is there a test for PANDAS?

No. The diagnosis of PANDAS is a clinical diagnosis, which means that there are no lab tests that can diagnose PANDAS. Instead clinicians use 5 diagnostic criteria for the diagnosis of PANDAS (see below). At the present time the clinical features of the illness are the only means of determining whether or not a child might have PANDAS.

What are the diagnostic criteria for PANDAS?

Pandas is diagnosed if there is an episodic history of the following symptoms associated with strep infections.

  • Presence of Obsessive-compulsive disorder and/or a tic disorder, ADHD symptoms or oppositional behaviours 
  • Association with neurological abnormalities (motor hyperactivity, or adventitious  movements, such as choreiform movements)
  • Paediatric onset of symptoms (age 3 years to puberty)
  • Episodic course of symptom severity. (symptoms come and go)
  • Association with group A Beta-hemolytic streptococcal infection (GABHS)
  • GABHS evidenced by either a positive throat culture for strep or positive for streptococcus serology (ASOT or AntiDNAse-B)
  • A history of Scarlet Fever or Rheumatic fever

What is an episodic course of symptoms?

Children with PANDAS seem to have dramatic ups and downs in their OCD and/or tic severity. Tics or OCD which are almost always present at a relatively consistent level do not represent an episodic course. Many children with OCD or tics have good days and bad days, or even good weeks and bad weeks. However, patients with PANDAS have a very sudden onset or worsening of their symptoms, followed by a slow, gradual improvement. If they get another strep. infection, their symptoms suddenly worsen again. The increased symptom severity usually persists for at least several weeks, but may last for several months or longer. The tics or OCD then seem to gradually fade away, and the children often enjoy a few weeks or several months without problems. When they have another strep. throat infection the tics or OCD or associated behaviours return just as suddenly and dramatically as they did previously.

My child has had strep. throat before, and he has tics and/or OCD. Does that mean he has PANDAS?

No. Many children have OCD and/or tics, and almost all school aged children get strep. throat at some point in their lives. Only when a child has a very episodic course of tics and/or OCD and seems to have strep. throat shortly before or at the time of a dramatic worsening of symptoms does this indicate the possibility of PANDAS.

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

An elevated anti-strep. titer (such as an ASOT or an AntiDNAse-B) means the child has had a strep. infection sometime within the past few months, and his body created antibodies to fight the streptococcus bacteria. This is not bad. In fact it is a normal, healthy response-- all healthy people create antibodies to fight infections. 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. This means that an elevated anti-streptococcal titer may have nothing to do with the present worsening symptoms, but instead indicates a long-since healed strep. throat.

Could an adult or teenager have PANDAS? 

By definition, PANDAS is a paediatric disorder. It is possible that adolescents and adults may have immune mediated OCD. Although the research studies at the NIMH are restricted to PANDAS, there are a number of reported cases in the medical literature of adolescent and adult onset OCD and TICS with GABHS and even non-Haemolitic streptococcus infections.

Will Penicillin treat PANDAS? 

No. Penicillin and other antibiotics kill streptococcus and other types of bactera. The antibiotics treat the sore throat or pharyngitis caused by the strep., by getting rid of the bacteria. However, in PANDAS, it appears that antibodies produced by the body in response to the strep. infection are the cause of the problem, not the bacteria themselves. Therefore one could not expect antibiotics such as penicillin to treat the symptoms of PANDAS. 

Current research at the NIMH has been investigating the use of antibiotics as a form of prophylaxis or prevention of future problems. It is important to note however, that the success of antibiotic prophylaxis for PANDAS patients has not yet been proven. Until its usefulness is determined, penicillin and other antibiotics should NOT be used as long-term treatment for OCD and tics

...............

Debbie, your questions are pretty much the cyber-equivalent of a graduate school blue book exam.  I'm not interested in taking any more exams - and if I were, I don't know where I'd begin to find the time to take yours.  But I am flattered that you would ask nonetheless.

smn

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JenMcK

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Reply with quote  #15 
I probably do have misophonia, if it means "hatred of sounds."  It's not so much that I hate the sounds, I just cannot stand to hear them.  I also strongly believe that I have OCD.  It (OCD) runs in my family.  My brother and my dad (and a few other relatives) have tourette's-like tics, which are annoying to no end.  However I was told (by my OCD therapist) that those tics are on the OCD spectrum.  And I do have a distant cousin who does suffer from hyperacusis.  My family is just so colorful and messed up, lol.

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Johnloudb

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Reply with quote  #16 

Hi Debbie,

I just want to add a few thoughts. There are sounds that people are naturally phobic to, and it differs from person to person. Doctor Hazell talked about this in one of his papers. The sound that initially hurt my ears (i.e. a very quiet noise produced by our stereo) was a sound that my ears were naturally phobic to. Same for both my parents. 

The sound that initially bothered Jen wasn't caused by conditioning, just based on her description of how her misophobia happened. The conditioning comes afterward. 

This also typical of how people develop phobias. My uncle was standing on a hillside when an airplane flew overhead - caused a panic attack, and he couldn't move. It just happened. From then on he had a fear of heights and can't even drive down canyon roads with lots of switchbacks. 

Sometimes the sensory system makes "mistakes."

So, just because you don't know how these sounds become a problem doesn't mean it's some kind of neurological disease/damage, and it doesn't mean it can't treated through retraining.

Best,

John

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aQuieterBreeze

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Reply with quote  #17 
Hi Debbie,

Can you please tell us the source of your article? Thank you.
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DrNagler

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Reply with quote  #18 
QB, the article was written by Jacques Duff, an Australian psychologist studying for his Ph.D.  Mr. Duff offers no references or controlled studies to back up his assertions.

http://www.adhd.com.au/PANDAS.htm

smn

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Debbie

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Reply with quote  #19 
Hi John,

That is a good point, I believe that what you describe can happen, and that there are probably also ways to "break the spell" in these case.
Such as with EFT & MMT and other techniques which were designed to help the body/mind/nervous system "untangle" crossed wires.

In terms of the specific patterns of misophonia as described above, I suppose it might also be possible at times for any particular brain function to get crossed as you describe and possibly uncrossed with the right therapy techniques.

I still do also think as I posted above that the strep-related auto-immune explanation for 'misophonia' is worth careful consideration.

If it is related, this would have important implications for treatment and prevention, as well as how a person with these symptoms perceives themselves (just like mothers used to be blamed for bad mothering if a child got schitzphrenia, and now we know that is not where to look for the answers, those with severe 'misophonia' could stop being urged to define their challenge in terms of an (obviously quite profound) "issue" related to some incindent or conditioning that they seem to never be able to identify.

They could instead let go of that  added  baggage and temptation to think of themselves as "crazy" (a sentiment so many express)
because of never being able to get to the bottom of 
this supposed psychological issue.

I think that understanding could take a weight off of the shoulders of many, a weight which in itself could be very stressful to carry.


And again, I also think it is important to investigate the possibility that severe 'misophonia' could be a strep-linked auto-immune disorder
because if this response to strep (leading to OCD, ADD, tourettes, tics, possibly misophonia..) has a genetic component, then family history could help lead to preventative measures in families with genetically suseptable kids.

And also to a better sense of what additional therapies might possibly help adults. 


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Debbie

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Reply with quote  #20 
Hi Breeze,

http://www.adhd.com.au/PANDAS.htm

and PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Asociated with Streptococcus) is a medical term which can be readily searched on the web.


Debbie

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aQuieterBreeze

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Reply with quote  #21 
Hi Debbie,

When articles or information is posted, i think it can be helpful to know where it comes from. Thank You.
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Debbie

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Reply with quote  #22 

 Medline abstract 2009 PubMed.

 

 

Riv Psichiatr. 2009 Sep-Oct;44(5):285-98.

[PANDAS: a possible model for adult OCD pathogenesis]

[Article in Italian]

Marconi D, Limpido L, Bersani I, Giordano A, Bersani G.

Dipartimento di Scienze Psichiatiche e Medicina Psicologica, Sapienza Università di Roma.

Abstract

Obsessive-compulsive disorder is a disabling disorder. Genetic predisposing factors may have an important role in the onset of the symptoms, but is not been individualized any specific gene yet. In the last years it has been demonstrated that obsessive-compulsive disease and/or tic syndromes may be triggered by an antecedent infection especially with group A beta-hemolytic streptococci. On the basis of recent studies has been postulated that in genetically predisposed individuals, certain streptococcal antigens trigger antibodies which, through a process of molecular mimicry, cross-react with epitopes on the basal ganglia. According to such hypothesis, the acronym PANDAS has been used to describe a subset of children with abrupt onset or exacerbations of OCD or tics, or both, following streptococcal infections. Neuroimaging studies reveal increased basal ganglia volumes, and the proposed cause involves the cross-reaction of streptococcal antibodies with basal ganglia tissue. The hypothesis of a possible involvement of the immunitary system seems justified from quantitative alterations of TNF-alpha, IL-6 and IL-1 in the patients' serum with such syndrome. Echotomographic studies on cardiac valves have not yet demonstrated the parallels between PANDAS and Sydenham's chorea. The use of treatment strategies, such as therapeutic plasmapheresis or intravenous immunoglobulin, has been proposed to explain the autoimmune process responsible for the pathogenesis of PANDAS. Further research is still necessary in order to understand the role of streptococcal infection in the pathogenesis of PANDAS.

PMID: 20066816 [PubMed - indexed for MEDLINE]


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Debbie

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Reply with quote  #23 

Source: Pediatrics the Official Journal of the American Acadamy of Pediatrics

Full article link:
http://pediatrics.aappublications.org/


Exerpt of article below:

PEDIATRICS Vol. 113 No. 4 April 2004, pp. 907-911




COMMENTARY


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

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

Pediatrics and Developmental Neuropsychiatry Branch
Intramural Research Program
National Institute of Mental Health
Bethesda, MD 20892
Division of Child Psychiatry
Brown University
Providence, RI 02912
Child Psychiatry Branch
Intramural Research Program
National Institute of Mental Health
Bethesda, MD 20892

Abbreviations: OCD, obsessive-compulsive disorder • PANDAS, pediatric autoimmune neuropsychiatric disorders associated with streptococcal infection • NIMH, National Institute of Mental Health

Over a century ago, Sir William Osler wrote, "To carefully observe the phenomena of life in all its phases ... to call to aid the science of experimentation, to cultivate the reasoning faculty, so as to be able to know the true from the false—these are our methods."1

These were also the methods that led to the discovery of poststreptococcal obsessive-compulsive disorder (OCD) and tic disorders and a decade of observations and research resulting in the description of a novel cohort of patients, the pediatric autoimmune neuropsychiatric disorders associated with streptococcal infection (PANDAS) subgroup.2,3 In this issue of Pediatrics, Kurlan and Kaplan raise questions about the veracity of these data.4 To respond, we will provide a brief literature review and clarification of the guidelines for management of a patient in the PANDAS subgroup.

The discovery of the PANDAS subgroup was the result of 2 parallel lines of clinical research conducted at the National Institute of Mental Health (NIMH): studies of children with OCD and investigations of children with Sydenham’s chorea, the neurologic manifestation of rheumatic fever. Systematic observations of children with OCD revealed that, although the majority of children had a gradual onset of symptoms over several weeks to months, a subgroup of the patients experienced an explosive "overnight" onset of obsessions and compulsions followed by a relapsing-remitting symptom course.5 Closer observation revealed that the neuropsychiatric symptom relapses frequently occurred after episodes of streptococcal pharyngitis or scarlet fever. These findings in OCD closely paralleled those from a series of investigations of Sydenham’s chorea.6 In those studies, 65% to 100% of children with Sydenham’s chorea were noted to have obsessive-compulsive symptoms, typically presenting 2 to 4 weeks before the onset of the adventitious movements and peaking in severity simultaneously with the chorea.6,7 Longitudinal observations of the OCD subgroup and the patients with Sydenham’s chorea clearly demonstrated a temporal association between streptococcal infections and obsessive-compulsive symptoms. This relationship was not only observed consistently among patients presenting to the NIMH but also noted by several independent groups.811 The nature of the association was unknown, and the observations could not elucidate whether the streptococcal infections played an etiologic role, but these issues would be addressed through subsequent scientific experimentation.

The title of the article by Kurlan and Kaplan4 provides a provocative starting point for discussion of the scientific hypotheses that derive from the clinical observations of the PANDAS subgroup. However, the authors subsequently blur the distinction between clinical observation and scientific investigation, leading them to dismiss the well-documented observations that neuropsychiatric symptoms are associated with streptococcal infections in the PANDAS subgroup because the etiology of PANDAS "remains a yet-unproven hypothesis."4 The authors thus recommend against obtaining throat cultures or serial titers in patients with abrupt-onset OCD and tics "until more definitive scientific proof is forthcoming." We strongly disagree with this recommendation. The continued threat of rheumatic fever mandates the detection and appropriate treatment of streptococcal infections, including asymptomatic infections, the leading cause of rheumatic carditis in the United States.12 If one argues that OCD and tics are a manifestation of streptococcal infection for children in the PANDAS subgroup, then the infections aren’t really "silent" or "asymptomatic." In either case, a conservative treatment course would include administration of antibiotics for culture-proven streptococcal infections. In addition, Murphy and Pichichero11 have documented that prompt treatment of streptococcal infections is associated with a rapid diminution of obsessive-compulsive symptom severity for some children in the PANDAS subgroup. Thus, the potential benefits of appropriate diagnosis and treatment of an occult streptococcal infection far outweigh the modest cost of obtaining a throat swab and culture. Of course, when throat cultures are obtained, there is a risk of falsely identifying a "carrier" as an asymptomatic infection, but this risk is small. Systematic studies typically report the frequency of carriers to be <5% to 10%.13 Thus, the vast majority of positive throat cultures represent true streptococcal infections, for which antibiotics administration is the accepted standard of care.


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aQuieterBreeze

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Reply with quote  #24 
DrNagler,

In looking back through this thread, (late in the day on Sunday) I noticed your reply though somehow I had missed it earlier in the day on Sunday, when I had replied to Debbie.   Thank You, for your reply and the information.
(I noticed your reply late on Sunday, and have been meaning to say thanks since that time, but have been sidetracked by trying to write out some other posts.)
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