Dr. Swedo in the news ! (Le Roy)

[PANDAS_Denmark]

The Tic -only thing, and the fact that it is all girls, makes it look like something else to me too - not clear cut pandas - but obviously could still be immune related or infection related. I'm sure that Dr T did some investigation where the other symptoms are concerned.

And, from everything I've read tics are more common in pandas boys, not girls, so even weirder.

 

I just hate these narrow definitions. They need to look at the girls immune systems and forget the stupid definitions. If all of the girls have had either strep or mycoplasma, I find that highly unlikely that those two things are not related to what is going on. But, whatever those titers are need to be compared to what the "normal" is - preferrably from another area, not the same student body. Could be a certain strain of strep went through that student body and these were the girls that ended up with the [ost-infectious disorder from it (and possibly because of more exposures too).

 

In addition - while titers are very common among grade school population - and I've read those studies - I don't think that true of high school population. I think I've seen that somewhere recently, but don't reacall where or if it was strep or mycoP I was reading about. Does anyone recall seeing something about titers decreasing from ages 12-18 (a chart maybe?).

 

The whole "who owns tics" debate is hurting these kids. That and the narrow defintions. Why can't they say - in "2/3 of the cases we see both tics and OCD". When your kids is flailing violently about all day, it makes the other things minimal. These girs may have other symtoms - teen girls don't normally come on national TV and admit to doing weird things in secret that they know are "wrong". They hide it from everyone.

 

Swedos original work - I think all or almost all had tics, and then 2/3 also had OCD. I know a bunch only had tics. And many responded to treatment, but not all of them (2 ? who did not improve with IVIG). 2 is not enough of a group. And the ones in the PEX group that were tics only did improve from what I recall.

 

Swedo clearly trying to move away from the tic controversy. she's backing down to "bullying" Here is what she said in Texas in October:

________________________________________

DRAFT Criteria for Pediatric Acute-onset Neuropsychiatric Syndrome (PANS)

I.

Abrupt, dramatic onset or recurrence of obsessive-compulsive disorder (Eating disorders may be an alternate manifestation of OCD and are counted here)

II.

Concurrent presence of additional neuropsychiatric symptoms, with similarly acute onset, from at least two of the following seven categories (see text for full description):

1. Anxiety

2. Sensory or motor abnormalities

3. Behavioral (developmental) regression

4. Deterioration in school performance

5. Emotional lability and/or depression

6. Urinary symptoms

7. Sleep disturbances

III.

Symptoms are not better explained by a known neurologic or medical disorder, such as Sydenham chorea, systemic lupus erythematosus, Tourette disorder or others. Note: The diagnostic work-up for PANS must be comprehensive enough to rule out these and other relevant disorders. The nature of the co-occurring symptoms will dictate the necessary assessments, which may include MRI scan, lumbar puncture, electroencephalogram or other diagnostic tests.

______________________________

 

( Isn't it wrong that Tourette disorder is a "better explaination" than pans or pandas!!? So backwards - it it isn't pans or pandas and the kids isn't helped by IVIG and antibirotcs - THEN its tourettes.

 

 

According to The Batavian Q and A with Susan Swedo (http://thebatavian.com/howard-owens/q-dr-susan-swedo-regarding-pandas/30364) if that is considered a reliable source of information, she now states that :

 

"The updated clinical criteria for PANDAS are as follows:

 

1) Presence of obsessive-compulsive disorder and/or tic disorder;

 

2) Unusually abrupt onset of symptoms ("overnight," "0 to 60 in one to two days," "possessed by the illness");

 

3) Prepubertal onset (NOTE: This criterion was an arbitrary one chosen because post-streptococcal reactions are rare after age 12, but could occur in individuals who do not have protective immunity.);

 

4) Association with other neuropsychiatric symptoms, including various combinations of the following (NOTE: All would start suddenly and in combination in a previously healthy child):

 

a. Severe separation anxiety (can't leave parent's side, needs to sleep on floor next to their bed etc);

 

b. Generalized anxiety which may progress to episodes of panic and "terror-stricken look";

 

c. Motoric hyperactivity, abnormal movements and sense of restlessness;

 

d. Sensory abnormalities, including hypersensitivity to light or sounds, distortions of visual perceptions and, occasionally, visual or auditory hallucinations;

 

e. Concentration difficulties, loss of academic abilities, particularly in math and visuo-spatial skills;

 

f. Urinary frequency and new onset of bed-wetting;

 

g. Irritability (sometimes with aggression) and emotional lability. Abrupt onset of depression can also occur, with suicidal ideation;

 

h. Developmental regression, including temper tantrums, "baby talk" and handwriting deterioration (also related to motor symptoms).

 

5) Association with streptococcal infection. At initial onset, the symptoms may have followed an (asymptomatic and therefore untreated) streptococcal infection by several months or longer, so you might not find the inciting strep infection. However, on subsequent recurrences, the worsening of the neuropsychiatric symptoms may be the first sign of an occult strep infection (and prompt treatment may reduce the OCD and other symptoms).

 

FOR PANS – Criterion #1 is limited to OCD only (no tic disorders as primary diagnosis) and the last criterion is eliminated because PANS stands for Pediatric Acute-onset Neuropsychiatric Syndrome and does not include an etiologic component."

 

 

I´m a bit confused by this :

 

- Now we have BOTH PANDAS AND PANS ? - with two different sets of criteria ? Have I got it all wrong ? Wasn´t the intention to work and agree on a new and better defintion of PANDAS (and PANDASlike diseases/PITAND) ? and as a part of that process to rename the disease - to PANS ?

 

- What SEEMS to happen as far as I can see, is that we will now have PANS that doesn´t include an etiologic component and as such cannot and will not be able to pinpoint adequate treatments but only those that merely adress the symptoms ?

 

- AND we will still have PANDAS, that includes the etiological component, and/but there will still be disagreement as to the question of possible etiological factors - and as a consequence of that : What are the treatment options that should be considered ?

 

- AND the kids with PANDAS(like illness) due to myco, lyme etc. will still be left in the middle of nowhere (or with a PANS diagnosis, that leaves them without treatment options others than those that merely adresses the symptoms ?)

 

What is the gain from all of this ????

[norcalmom]

That is a great article summary linked to above.

 

I think Swedo is using a systematic approach - OCD and strep first. That is how the study she is doing right now is written up. OCD is the primary symptom, and has to be very tightly linked to strep. So, there aren't any kids in it that are only ticcers. Not to say none tic, but there are OCD only kids, and OCD and tics as a secondary symptom. So, unfortunately for kids that primarily ticcers (and those with something other than strep like myco or lyme) - this study will not help them. Her fist study from 1998 - it was the opposite.

 

But, she has stated that she is working on Lyme study already.

 

It will be interesting if those that do antibitocs andit inflamatory and maybe IVIG get better. I suppose it could be that those kids may have "a better placebo in Dr T" than the dent kids getting psych meds. Sorry for he sarcasm - but I can't believe that Fox news guy suggested that. Dr T will have a placebo effect on the kids because he cares.

[oivay]

I was puzzled by the "he'll have a placebo effect because he cares" remark too........

 

Does this mean that if your doctor doesn't care, you won't get better?

[eljomom]

I couldn't agree more!!! I just posted a very similar response to this link of Q&A on the facebook group. Basically, that I thought PANS was meant to include Pandas AND Pitand. And why in PANS are tics not in the symptoms list? But most of all, it puts those of us who are NOT helped by antibiotics S.O.L. for treatment options, since IVIG is stated as being treatment for "severe cases."

 

 

The Tic -only thing, and the fact that it is all girls, makes it look like something else to me too - not clear cut pandas - but obviously could still be immune related or infection related. I'm sure that Dr T did some investigation where the other symptoms are concerned.

And, from everything I've read tics are more common in pandas boys, not girls, so even weirder.

 

I just hate these narrow definitions. They need to look at the girls immune systems and forget the stupid definitions. If all of the girls have had either strep or mycoplasma, I find that highly unlikely that those two things are not related to what is going on. But, whatever those titers are need to be compared to what the "normal" is - preferrably from another area, not the same student body. Could be a certain strain of strep went through that student body and these were the girls that ended up with the [ost-infectious disorder from it (and possibly because of more exposures too).

 

In addition - while titers are very common among grade school population - and I've read those studies - I don't think that true of high school population. I think I've seen that somewhere recently, but don't reacall where or if it was strep or mycoP I was reading about. Does anyone recall seeing something about titers decreasing from ages 12-18 (a chart maybe?).

 

The whole "who owns tics" debate is hurting these kids. That and the narrow defintions. Why can't they say - in "2/3 of the cases we see both tics and OCD". When your kids is flailing violently about all day, it makes the other things minimal. These girs may have other symtoms - teen girls don't normally come on national TV and admit to doing weird things in secret that they know are "wrong". They hide it from everyone.

 

Swedos original work - I think all or almost all had tics, and then 2/3 also had OCD. I know a bunch only had tics. And many responded to treatment, but not all of them (2 ? who did not improve with IVIG). 2 is not enough of a group. And the ones in the PEX group that were tics only did improve from what I recall.

 

Swedo clearly trying to move away from the tic controversy. she's backing down to "bullying" Here is what she said in Texas in October:

________________________________________

DRAFT Criteria for Pediatric Acute-onset Neuropsychiatric Syndrome (PANS)

I.

Abrupt, dramatic onset or recurrence of obsessive-compulsive disorder (Eating disorders may be an alternate manifestation of OCD and are counted here)

II.

Concurrent presence of additional neuropsychiatric symptoms, with similarly acute onset, from at least two of the following seven categories (see text for full description):

1. Anxiety

2. Sensory or motor abnormalities

3. Behavioral (developmental) regression

4. Deterioration in school performance

5. Emotional lability and/or depression

6. Urinary symptoms

7. Sleep disturbances

III.

Symptoms are not better explained by a known neurologic or medical disorder, such as Sydenham chorea, systemic lupus erythematosus, Tourette disorder or others. Note: The diagnostic work-up for PANS must be comprehensive enough to rule out these and other relevant disorders. The nature of the co-occurring symptoms will dictate the necessary assessments, which may include MRI scan, lumbar puncture, electroencephalogram or other diagnostic tests.

______________________________

 

( Isn't it wrong that Tourette disorder is a "better explaination" than pans or pandas!!? So backwards - it it isn't pans or pandas and the kids isn't helped by IVIG and antibirotcs - THEN its tourettes.

 

 

According to The Batavian Q and A with Susan Swedo (http://thebatavian.com/howard-owens/q-dr-susan-swedo-regarding-pandas/30364) if that is considered a reliable source of information, she now states that :

 

"The updated clinical criteria for PANDAS are as follows:

 

1) Presence of obsessive-compulsive disorder and/or tic disorder;

 

2) Unusually abrupt onset of symptoms ("overnight," "0 to 60 in one to two days," "possessed by the illness");

 

3) Prepubertal onset (NOTE: This criterion was an arbitrary one chosen because post-streptococcal reactions are rare after age 12, but could occur in individuals who do not have protective immunity.);

 

4) Association with other neuropsychiatric symptoms, including various combinations of the following (NOTE: All would start suddenly and in combination in a previously healthy child):

 

a. Severe separation anxiety (can't leave parent's side, needs to sleep on floor next to their bed etc);

 

b. Generalized anxiety which may progress to episodes of panic and "terror-stricken look";

 

c. Motoric hyperactivity, abnormal movements and sense of restlessness;

 

d. Sensory abnormalities, including hypersensitivity to light or sounds, distortions of visual perceptions and, occasionally, visual or auditory hallucinations;

 

e. Concentration difficulties, loss of academic abilities, particularly in math and visuo-spatial skills;

 

f. Urinary frequency and new onset of bed-wetting;

 

g. Irritability (sometimes with aggression) and emotional lability. Abrupt onset of depression can also occur, with suicidal ideation;

 

h. Developmental regression, including temper tantrums, "baby talk" and handwriting deterioration (also related to motor symptoms).

 

5) Association with streptococcal infection. At initial onset, the symptoms may have followed an (asymptomatic and therefore untreated) streptococcal infection by several months or longer, so you might not find the inciting strep infection. However, on subsequent recurrences, the worsening of the neuropsychiatric symptoms may be the first sign of an occult strep infection (and prompt treatment may reduce the OCD and other symptoms).

 

FOR PANS – Criterion #1 is limited to OCD only (no tic disorders as primary diagnosis) and the last criterion is eliminated because PANS stands for Pediatric Acute-onset Neuropsychiatric Syndrome and does not include an etiologic component."

 

 

I´m a bit confused by this :

 

- Now we have BOTH PANDAS AND PANS ? - with two different sets of criteria ? Have I got it all wrong ? Wasn´t the intention to work and agree on a new and better defintion of PANDAS (and PANDASlike diseases/PITAND) ? and as a part of that process to rename the disease - to PANS ?

 

- What SEEMS to happen as far as I can see, is that we will now have PANS that doesn´t include an etiologic component and as such cannot and will not be able to pinpoint adequate treatments but only those that merely adress the symptoms ?

 

- AND we will still have PANDAS, that includes the etiological component, and/but there will still be disagreement as to the question of possible etiological factors - and as a consequence of that : What are the treatment options that should be considered ?

 

- AND the kids with PANDAS(like illness) due to myco, lyme etc. will still be left in the middle of nowhere (or with a PANS diagnosis, that leaves them without treatment options others than those that merely adresses the symptoms ?)

 

What is the gain from all of this ????