What explanation do the naysayers have?

[thereishope]

I have a question...for the doctors out there who are the naysayers of PANDAS, what do they think is going on with these children who have a sudden onset of OCD, tics, etc, have a + strep test, then get better over time after taking an antibiotic to once again have the sudden onset with a + strep test, etc, etc?

 

Are they claiming it's just OCD that wax and wanes and the + strep is a coincidence?

 

I know not all PANDAS chilldren fit that definition, but I am using those as an example.

[greenmommy]

Good question!! That is the hardest part...when you run into a naysayer that won't even listen to you.

 

A

[Kayanne]

We saw a ped. rhumy, who's explaination was that these kids were just a subset of tourettes....based on Kaplan and Singer's work.

 

He told my daughter's pediatrician that he was "open" to the PANDAS idea, but he told us that he didn't think there was enough proof to claim that it was autoimmune----ironiclly we saw him the same day the Coulmbia study was released (Aug 11th), but I didn't hear of it until the next day.

 

His son has TS, and he was somwhat suprised that my dd recovered so well with prednisone....but he said that some kids with Tourettes don't get worse on steroids.

[thereishope]

See that what frustrates me. Okay...if their a subset of Tourette's or OCD are they suggesting that the parents were in denial prior to the sudden onset and just never saw that their child had these issues? Did he at least admit that the strep or infection made it worse somehow?

 

It's always a half explanation.

 

1.You're child is bipolar...Well, bipolar tendencies build over a length of time, not overnight. Why did my child become bipolar overnight?

2.You're child already had TS or OCD...Well, is it normal to probably rank near 40 on the Yale Brown then be subclinical in a couple months w/o treatment?

3.The "not autoimmune" explanation...well, then what caused the sudden onset or dramatic rise in symtoms? Waxing and waning should not be so dramatic. Like you said, steroids and IVIG would not help if it wasn't autoimmune.

4.How do they explain that the only way parnets know to bring their kids in for a strep test is when their are acting so out of sorts?

 

 

 

I think I'm just tired of asking questions, just to be faced w/ the head shaking that acknowledges your question but doesn't answer it, the doctor's nervous giggle, etc.

[Buster]

What a great question....

 

The most cogent of the responses is:

"Your child is suffering from OCD. OCD is a genetic disorder. The vocal tic could be Tourettes Syndrome. TS is thought to occur in about 1% of the population and OCD is thought to affect 2-3% of the population. About 30% of those with TS have OCD."

 

(Note: They don't really know whether OCD is a genetic disorder, but I usually don't argue the point as I think the bulk of the evidence points that way).

 

Okay, thanks, the sky is blue too, so aside from saying it's in the genes, what's happening?

 

"Well, we don't really know. We think OCD is isolated to a dysfunction in the Basal Ganglia and some problem with the dopamine receptor (type 2)."

 

How is it treated?

 

"For OCD, we think that SSRIs and Clinical Behavioral Therapy are the best ways to treat OCD."

 

How do SSRIs work?

"Actually we have no idea. We know that the various SSRIs stop absorption (reuptake) of seratonin and it looks like there is a residual effect on dopamine levels. We've found that dopamine levels affect cravings, fear, rituals, ..."

 

So why does CBT work?

"We're not sure, but it appears as if additional pathways/receptors get formed when faced with addresing fears."

 

So it is a physiological effect?

"We think so."

 

So does CBT work on all OCD and TS cases?

"Ah, no. It seems to be more effective on certain forms of OCD."

 

So what if I told you of a recent study that had isolated an antibody that bound with the dopamine receptors interfering with dopmine response?

"Your talking about the PANDAS theory..."

 

Why do you call it a theory?

"Well, there are lots of studies indicating that the correlation with streptococcal infection is unfounded."

 

Hmm, I've read over 200 papers on PANDAS and only found 2 studies by Dr. Kurlan where he wasn't able to replicate an experiment. Your saying there's a study indicating that OCD is not caused by strep?

"It's a controversial diagnosis. I've got to get going."

 

Okay, I guess what I'm really asking is if you ignore the strep side of PANDAS and they find an antibody that interferes with dopamine binding -- would you try to reduce the antibody?

 

"Got to go."

 

I've got to learn not to put data in front of doctors :-) I'm serious that this is about as far as I get in the conversation.

 

---------------

 

What I was trying to do was separate the association of strep with the antibody from reducing the antibody. What I think is important in Kirvan's studies is that antibody cross-reacts. So lets treat that first and then work our way back to what causes the antibody. I sure think we know, but if the controversy is in the trigger -- lets focus on the treatment and once we get that settled come back to the trigger.

 

 

I have a question...for the doctors out there who are the naysayers of PANDAS, what do they think is going on with these children who have a sudden onset of OCD, tics, etc, have a + strep test, then get better over time after taking an antibiotic to once again have the sudden onset with a + strep test, etc, etc?

 

Are they claiming it's just OCD that wax and wanes and the + strep is a coincidence?

 

I know not all PANDAS chilldren fit that definition, but I am using those as an example.

[peglem]

Buster, your posts always explain things so well!

 

You mentioned the D2 receptor being involved in OCD. So, would antibodies to D2 indicate OCD? I'm asking because w/ my daughter being nonverbal and autistic (not a good candidate for CBT, given the communication problems), the things I see as OCD in her are identified by psychiatrists and neurologists as self stim and stereotypies...."normal autism". The only antibody elevated on her Cunningham study was the D2 (though her CamKinaseII was very high as well), so does this confirm OCD? What I see as her OCD is she'll engage in activities manically and become upset and unable to stop herself from doing them, whereas stims and stereotypies are supposed to be things that help with self regulation instead of increasing disregulation.

[Buster]

Hi Peglem,

 

I hate to say it, but no, you can't use the Cunningham/Kirvan or Church/Dale tests as diagnostic. The sample sizes are still way too small to establish any norms. In particular, the range of normal on the anti-D2 is quite wide and the mean is elevated -- so it's likely that it's not specific enough to help. Sorry. It might (repeat the might) help add weight to a clinical diagnosis, but really hard to say at this point.

 

In term of the quote from the doctor around D2 receptor item, he was referring to

http://www.journals.elsevierhealth.com/per...0109-X/abstract

and

http://www.nature.com/npp/journal/v32/n1/full/1301199a.html

 

The finding was that there was an effect of SSRI's on D2 receptors but it was unclear whether the seratonine level or the dopamine level was affecting the behavior.

 

Regards,

 

Buster

 

Buster, your posts always explain things so well!

 

You mentioned the D2 receptor being involved in OCD. So, would antibodies to D2 indicate OCD? I'm asking because w/ my daughter being nonverbal and autistic (not a good candidate for CBT, given the communication problems), the things I see as OCD in her are identified by psychiatrists and neurologists as self stim and stereotypies...."normal autism". The only antibody elevated on her Cunningham study was the D2 (though her CamKinaseII was very high as well), so does this confirm OCD? What I see as her OCD is she'll engage in activities manically and become upset and unable to stop herself from doing them, whereas stims and stereotypies are supposed to be things that help with self regulation instead of increasing disregulation.

[Buster]

Peglem:

 

You might also want to see the paper:

 

http://journals.lww.com/co-neurology/Abstr...isorders.4.aspx

 

Buster

[thereishope]

When do you think the doctors will start carrying panic buttons that they can press when a PANDAS parent asks them relevant questions and don't take their word as God's? It'll probably be voice sensitive. The second PANDAS is said, it goes off.

 

 

 

What a great question....

 

The most cogent of the responses is:

"Your child is suffering from OCD. OCD is a genetic disorder. The vocal tic could be Tourettes Syndrome. TS is thought to occur in about 1% of the population and OCD is thought to affect 2-3% of the population. About 30% of those with TS have OCD."

 

(Note: They don't really know whether OCD is a genetic disorder, but I usually don't argue the point as I think the bulk of the evidence points that way).

 

Okay, thanks, the sky is blue too, so aside from saying it's in the genes, what's happening?

 

"Well, we don't really know. We think OCD is isolated to a dysfunction in the Basal Ganglia and some problem with the dopamine receptor (type 2)."

 

How is it treated?

 

"For OCD, we think that SSRIs and Clinical Behavioral Therapy are the best ways to treat OCD."

 

How do SSRIs work?

"Actually we have no idea. We know that the various SSRIs stop absorption (reuptake) of seratonin and it looks like there is a residual effect on dopamine levels. We've found that dopamine levels affect cravings, fear, rituals, ..."

 

So why does CBT work?

"We're not sure, but it appears as if additional pathways/receptors get formed when faced with addresing fears."

 

So it is a physiological effect?

"We think so."

 

So does CBT work on all OCD and TS cases?

"Ah, no. It seems to be more effective on certain forms of OCD."

 

So what if I told you of a recent study that had isolated an antibody that bound with the dopamine receptors interfering with dopmine response?

"Your talking about the PANDAS theory..."

 

Why do you call it a theory?

"Well, there are lots of studies indicating that the correlation with streptococcal infection is unfounded."

 

Hmm, I've read over 200 papers on PANDAS and only found 2 studies by Dr. Kurlan where he wasn't able to replicate an experiment. Your saying there's a study indicating that OCD is not caused by strep?

"It's a controversial diagnosis. I've got to get going."

 

Okay, I guess what I'm really asking is if you ignore the strep side of PANDAS and they find an antibody that interferes with dopamine binding -- would you try to reduce the antibody?

 

"Got to go."

 

I've got to learn not to put data in front of doctors :-) I'm serious that this is about as far as I get in the conversation.

 

---------------

 

What I was trying to do was separate the association of strep with the antibody from reducing the antibody. What I think is important in Kirvan's studies is that antibody cross-reacts. So lets treat that first and then work our way back to what causes the antibody. I sure think we know, but if the controversy is in the trigger -- lets focus on the treatment and once we get that settled come back to the trigger.

 

 

I have a question...for the doctors out there who are the naysayers of PANDAS, what do they think is going on with these children who have a sudden onset of OCD, tics, etc, have a + strep test, then get better over time after taking an antibiotic to once again have the sudden onset with a + strep test, etc, etc?

 

Are they claiming it's just OCD that wax and wanes and the + strep is a coincidence?

 

I know not all PANDAS chilldren fit that definition, but I am using those as an example.

[peglem]

Thank you for the replies, Buster. I did a little searching and it does seem like diminished binding of D2 receptor is associated with OCD, although not considered to be diagnostic, I think it may bolster my case so they at least don't think I'm imagining things. My daughter has never been an SSRI responder, so maybe if SSRI's do have an effect on D2 receptors, the antibodies have been blocking that effect?

 

 

Just thinking out loud.

[EAMom]

We saw a ped. rhumy, who's explaination was that these kids were just a subset of tourettes....based on Kaplan and Singer's work.

 

ha ha...that's funny since we (Buster and I) actually think Kaplan's and Singer's purported PANDAS kids were actually tourettes.

 

It probably doesn't help matters that neurologists (at least around here!) won't see a PANDAS kid that doesn't have tics. I would think it would be hard for them to call a severe OCD-only pandas kids "just a subset of tourettes"...I guess those kids are just spontaneously insane for no reason?

[peglem]

We saw a ped. rhumy, who's explaination was that these kids were just a subset of tourettes....based on Kaplan and Singer's work.

 

ha ha...that's funny since we (Buster and I) actually think Kaplan's and Singer's purported PANDAS kids were actually tourettes.

 

It probably doesn't help matters that neurologists (at least around here!) won't see a PANDAS kid that doesn't have tics. I would think it would be hard for them to call a severe OCD-only pandas kids "just a subset of tourettes"...I guess those kids are just spontaneously insane for no reason?

 

Its a circular argument. They are spontaneously insane because it is hereditary....just look at those poor, insane parents who have convinced themselves that it is caused by a microbe...they just can't accept what they've passed on to their children through their genes.

 

There must be some reason these people will not budge in the face of logical, scientific evidence. My guess is politics and money- isn't that always the way?

[thereishope]

I've thought that...the money thing. If they accept the idea of PANDAS, the psyhcologists and psychiatrists would lose a lot of patients. And insurance would have to cover IVIG for PANDAS. Phamaceuticals would lose parents filling in psych med prescriptions. That's a lot of money. You wonder what conversations go on behind closed doors.

[colleenrn]

I have met many, many physicians who have never heard of PANDAS, but I have never had a physician tell me they do not believe in PANDAS. I am waiting for that day and they will get an earful, to say the least. The docs I have met who have never heard of PANDAS, I always start my explanation with "I assume you have heard of rheumatic fever, well it is very similiar to that process. The body makes antibodies to attack the strep, but in rheumatic fever, these antibodies mistakingly attack the heart. In PANDAS they mistakingly attack the basal ganglia"

 

I think some of the "disbelief" is just plain stubborness. IF they are even taught about PANDAS in med school, they are told it is still a "theory". I know at our University, they "mention" it in med school and they have ONE lecture on it while they are doing their psych residency. I think that is the extent of it.

 

Colleen