Somewhere some lucky guy is having a heart attack!

[Worried_Dad]

A sore throat and cough might be symptoms of any number of different bacteria, viruses, allergies, metabolic problems, cancers.... Any doctor worth a bean understands that, right? Why must there be such a grotesque double standard when it comes to anything even remotely "psychiatric"?... Don't they teach people in medical school that the brain is a part of the body? The worse my son's neuropsychiatric symptoms became, the harder the treating psychiatrist tried to argue that all these symptoms were "psychogenic," "hysterical," "conversion," etc. He bombarded us with stories about victims of child abuse and veterans of war. Yes, WAR VETERANS!... Surreal!...

 

You GO, girl! Amen and hallelujah!!!

 

It absolutely drives me up a wall when a "mainstream MD" (pediatric neurologist, rheumatologist, infectious disease specialist, ER doc) takes one look at my miserable, suffering son and tells me the problem is "not medical." Huh? Since when is mental illness not medical, regardless of the underlying cause? It may or may not be physiological, but it sure as heck is MEDICAL!!! You wait 2-4 months or more to see a specialist, and they take one look at a child displaying psych symptoms and cannot WAIT to rush you out of their office. Of the endless series of local specialists we saw, only one of them ever ordered a single test of any kind (ECG after our son had already been diagnosed with ARF/SC by another doc), despite our son's fevers and explosion of neuropsych symptoms out of nowhere following high fever.

 

I recently read the book "Asleep" about the encephalitis lethargica epidemic in the 1920's. That book explained that neurology and psychiatry were one discipline in those days - neuropsychiatry - and nobody back then even questioned the logic of an infection triggering psych symptoms. Mind, brain, and body were treated more holistically. Then neurology and pyschiatry split and built a wall between their domains. I think patients have been suffering as a result ever since....

[Joan Pandas Mom]

I got in touch with the psyciatrist who prescribed it and like you here he said for some people it has the opposite effect. He said to stop giving it to him. He seems a little calmer tonight.

[tired mom]

Just want you to know, I know how hard it is to live in such a bizarre world. I am dealing with this for 8 years so I understand the pain of watching their childhood being destroyed by this. It takes such a remarkable patience to deal with some of the behaviors. Here's hoping that he will shut that door and open one that has a happy ending....

[Buster]

Okay, I just had to add to this thread...

 

I recently was following up on an assertion by a bunch of well-known neurologists that Sydenham Chorea was a self-limiting disease. I wanted to know the source for that assertion. What I found was quite the opposite. Sure the chorea seemed to be self limiting, but for those who got Sydenham Chorea who also got OCD, this seemed to be non-self-limiting and would go on for years if not treated.

 

 

In 1965, Freeman wrote that while the outright chorea tends to resolve, the psychological disabilities of Sydenham Chorea are long lasting. "The major findings in this study are the high incidence of psychological difficulty prior to the onset of chorea, and the startlingly high current incidence of psychiatric disability, an average of twenty-nine years after the original choreic episode.... The 75% incidence of psychiatric disturbance in chorea patients stands in marked contrast [to the control population of 5-33%]."

 

What caught my attention was that neurologists were treating Sydenham Chorea as self-limiting because the chorea tended to go away within 6 months (in many cases).

 

How on earth can a disease that has long term psychiatric symptoms if not treated be called "self-limiting" just because one of the symptoms goes away.

 

If you have found an article indicating the OCD symptoms are self-limiting (i.e., without intervention), I'd be interested in the reference.

 

Buster

[momaine]

Joan,

You said your son is 16, right? These older kids who have suffered with PANDAS for years just may take more treatments before they see the benefits?? I wouldn't give up after one. I am so sorry your son and family are suffering right now. We've been there, done that. I pray that you can call family and friends to come over and help you through these tough times.

[Joan Pandas Mom]

Thank all of you for this. I will keep you posted. We are gong for IVIG #2 later in the week. I am going to ask Dr. about increasing Augmentin. All of you have been so helpful.

[forjpj]

Hope things start to improve!! I soooooo get your topic title!! Being stuck in this nightmare is just horrific!! Thoughts and prayers!!

Sarah

[T_Mom]

Okay, I just had to add to this thread...

 

I recently was following up on an assertion by a bunch of well-known neurologists that Sydenham Chorea was a self-limiting disease. I wanted to know the source for that assertion. What I found was quite the opposite. Sure the chorea seemed to be self limiting, but for those who got Sydenham Chorea who also got OCD, this seemed to be non-self-limiting and would go on for years if not treated.

 

 

In 1965, Freeman wrote that while the outright chorea tends to resolve, the psychological disabilities of Sydenham Chorea are long lasting. "The major findings in this study are the high incidence of psychological difficulty prior to the onset of chorea, and the startlingly high current incidence of psychiatric disability, an average of twenty-nine years after the original choreic episode.... The 75% incidence of psychiatric disturbance in chorea patients stands in marked contrast [to the control population of 5-33%]."

 

What caught my attention was that neurologists were treating Sydenham Chorea as self-limiting because the chorea tended to go away within 6 months (in many cases).

 

How on earth can a disease that has long term psychiatric symptoms if not treated be called "self-limiting" just because one of the symptoms goes away.

 

If you have found an article indicating the OCD symptoms are self-limiting (i.e., without intervention), I'd be interested in the reference.

 

Buster

 

 

Nice find Buster! I hope you kicked that info. back to the "self limiting" chorea crowd--

[Worried_Dad]

Wow - this is fascinating. Yeah, when our ds 1st got the SC diagnosis, we were told it would resolve on its own in time. All the web resources we found (like wemove.org) also called SC "self-limiting." None of them ever broke this down by symptom, though, or talked about the psych symptoms separately from the neuro symptoms. So we naively just waited for the magic moment when our son would recover... and instead, he wound up with a PANDAS symptom explosion that made the original illness seem mild.

 

This makes a lot more sense. Wish I had known it in 2007, when the docs told us it would just go away. Thanks, Buster!

 

 

Okay, I just had to add to this thread...

 

I recently was following up on an assertion by a bunch of well-known neurologists that Sydenham Chorea was a self-limiting disease. I wanted to know the source for that assertion. What I found was quite the opposite. Sure the chorea seemed to be self limiting, but for those who got Sydenham Chorea who also got OCD, this seemed to be non-self-limiting and would go on for years if not treated.

 

 

In 1965, Freeman wrote that while the outright chorea tends to resolve, the psychological disabilities of Sydenham Chorea are long lasting. "The major findings in this study are the high incidence of psychological difficulty prior to the onset of chorea, and the startlingly high current incidence of psychiatric disability, an average of twenty-nine years after the original choreic episode.... The 75% incidence of psychiatric disturbance in chorea patients stands in marked contrast [to the control population of 5-33%]."

 

What caught my attention was that neurologists were treating Sydenham Chorea as self-limiting because the chorea tended to go away within 6 months (in many cases).

 

How on earth can a disease that has long term psychiatric symptoms if not treated be called "self-limiting" just because one of the symptoms goes away.

 

If you have found an article indicating the OCD symptoms are self-limiting (i.e., without intervention), I'd be interested in the reference.

 

Buster

 

 

Nice find Buster! I hope you kicked that info. back to the "self limiting" chorea crowd--

[philamom]

His Igenex was negative. Mycoplasma IgG only was elevated on my son, his older brother and me.

May I ask if you ran the Igenex co-infection panel? Sometimes a negative Lyme WB will become positive after treating the co-infection? I think Babesia can give severe symptoms and requires another medication along with the abxs. The drawback is, it's expensive.

I'm praying for your family and for success with the IVIG!

[norcalmom]

Joan (and others) sorry you are dealing with this. my only suggestion might be earplugs. I know it sound lame, but might take the edge off your own senses to keep you sane through it. Plus, everyone else beat me to offering you the best advice and support. Earplugs got me thorugh my son's terrible twos (and threes). You can still hear with them, just not as nerve wracking.

 

On another note from Busters questions-

 

I know I have read that SC is self limitng, and that people with a history of SC are more likely to develop OCD later in life...and I think I seen that referenced (or some idea similar to that ) in a number of articles. I am not nearly as diligent as Buster obviously - I just read into that what I wanted to hear. What I got from that reference was that "later in life" means it went away in the first place to resurface much later, and only in a small percent of SC patients. But Busters right, I don't recall any numbers being thrown around.

 

Something that seems to support Freeman - but different reference -Taken from the intro from Cunninghams Antibody-mediated neuronal cell signaling in behavior and movement disorder:

 

"(SC) Patients exhibit an array of

psychiatric and psychological abnormalities that often

predate the onset of the movement disorder by 2 to 4

weeks (Marques-Dias et al., 1997; Swedo et al., 1989). As

many as 70% of SC patients develop obsessive–compulsive

symptoms which are indistinguishable from OCD (Swedo,

1994; Swedo et al., 1998b). Choreic episodes typically

resolve within weeks of onset, however, neuropsychiatric

symptoms may persist after resolution of the movement

disorder (Asbahr et al., 1998, 1999)."

 

Maybe the Ashahr or Marques-Dias study has more info.

 

PS - buster you wrote- "this seemed to be non-self-limiting and would go on for years if not treated." what treatment are you talking about? medical intervention or traditional CBT stuff?

[Tenacity]

A sore throat and cough might be symptoms of any number of different bacteria, viruses, allergies, metabolic problems, cancers.... Any doctor worth a bean understands that, right? Why must there be such a grotesque double standard when it comes to anything even remotely "psychiatric"?... Don't they teach people in medical school that the brain is a part of the body? The worse my son's neuropsychiatric symptoms became, the harder the treating psychiatrist tried to argue that all these symptoms were "psychogenic," "hysterical," "conversion," etc. He bombarded us with stories about victims of child abuse and veterans of war. Yes, WAR VETERANS!... Surreal!...

 

You GO, girl! Amen and hallelujah!!!

 

It absolutely drives me up a wall when a "mainstream MD" (pediatric neurologist, rheumatologist, infectious disease specialist, ER doc) takes one look at my miserable, suffering son and tells me the problem is "not medical." Huh? Since when is mental illness not medical, regardless of the underlying cause? It may or may not be physiological, but it sure as heck is MEDICAL!!! You wait 2-4 months or more to see a specialist, and they take one look at a child displaying psych symptoms and cannot WAIT to rush you out of their office. Of the endless series of local specialists we saw, only one of them ever ordered a single test of any kind (ECG after our son had already been diagnosed with ARF/SC by another doc), despite our son's fevers and explosion of neuropsych symptoms out of nowhere following high fever.

 

I recently read the book "Asleep" about the encephalitis lethargica epidemic in the 1920's. That book explained that neurology and psychiatry were one discipline in those days - neuropsychiatry - and nobody back then even questioned the logic of an infection triggering psych symptoms. Mind, brain, and body were treated more holistically. Then neurology and pyschiatry split and built a wall between their domains. I think patients have been suffering as a result ever since....

 

You're a kindred spirit, Worried Dad!

 

Asleep is next on my reading list! I'm reading another book, Mania: A Short History of Bipolar Disorder, which addresses some of the same issues from another angle. Not perfect prose, not easy reading, but awfully interesting and thought-provoking. Discusses -- among many other things! -- how psychiatry has run amuck, and how "soft" neurological symptoms are routinely missed. (Surprise, surprise!...)

[rockytop]

I do not know the history of your son- meds or anything- but I would second worried dad's comment about ativan and otehr meds..

 

SSRI's & ativan WERE like pouring gasoline on a fire. not until we tried risperdone was there any positive effect noted-- risperidone works on dopamine and I imagine that is my daughter's problem. she started it this spring it is was very helpful. Praying for you tonight. I have been there ( as the mom) and I know the ###### you and him are going through.

[philamom]

This statement is in the brochure "Psychiatric Lyme disease" by ILADS:

Is there poor or paradoxical response or excessive side effect sensitivity to medications that are expected to be helpful for particular psychiatric disturbances? It could imply a warning sign of possible Lyme encephalopathy.

[T_Mom]

Worried Dad-- I have not read the "Asleep" book but when the author was interviewed on NPR I called in and chatted with her re: our Pandas experience...

 

She had heard of Pandas and mentioned that the historical records of those with encephalitis had noted that in children OCD was a symptom...

 

Imagine the number of children that have been affected over time, with no one recognizing it--It is a tragedy.