Brain inflammation

[JAG10]

Do you think based on presentation of symptoms, that the anti-neuronal antibodies attack a specific focal point in some children's brains and attack more diffusely in others? Or for another reason, brain inflammation occurs focally in some kids and diffusely in others?

 

I was thinking about how some parents post very specific, but horribly severe symptoms in their children that are clearly impairing, but their children's cognitive processing and awareness of what is happening to them seems intact.

 

This is not my dd10. If I had to guess I would say her inflammation is diffuse. If I had to pick one word to describe her most predominant symptoms it would be "intoxicated." Silly, goofy, pleasure-driven, sloppy, difficulty learning, paying attention, focusing, controlling bodily functions, cognitive fog/unawareness. It's a diffuse, overall impairment. Like drunk and equally responsive to Ibuprofen

 

So, if the basal ganglia is analogous to a giant ball of rubber bands, why is it more a case where are all the bands seem to be inflamed in some kids, yet others are having inflammation of very specific bands?

 

I don't know if I'm articulating the question correctly.....

[JAG10]

Didn't someone say Dr. Cunningham said there were several strains that could put PANDAS in motion? Do some strains mimic a specific subset of neuronal tissue while other strains mimic neuronal tissue in a more general way? Is it the bacteria or the individual child's brain determining symptomology presentation???

[Stephanie2]

I don't have an answer to your question, but "intoxicated, silly, goofy, pleasure-driven, etc." is ALWAYS the result of yeast for my boys. A good antifungal might be exactly what she needs...

 

Do you think based on presentation of symptoms, that the anti-neuronal antibodies attack a specific focal point in some children's brains and attack more diffusely in others? Or for another reason, brain inflammation occurs focally in some kids and diffusely in others?

 

I was thinking about how some parents post very specific, but horribly severe symptoms in their children that are clearly impairing, but their children's cognitive processing and awareness of what is happening to them seems intact.

 

This is not my dd10. If I had to guess I would say her inflammation is diffuse. If I had to pick one word to describe her most predominant symptoms it would be "intoxicated." Silly, goofy, pleasure-driven, sloppy, difficulty learning, paying attention, focusing, controlling bodily functions, cognitive fog/unawareness. It's a diffuse, overall impairment. Like drunk and equally responsive to Ibuprofen

 

So, if the basal ganglia is analogous to a giant ball of rubber bands, why is it more a case where are all the bands seem to be inflamed in some kids, yet others are having inflammation of very specific bands?

 

I don't know if I'm articulating the question correctly.....

[JAG10]

It's not yeast, it is behavioral regression; she was acting about half her age. And it has resolved since ivig.

[Kayanne]

Didn't someone say Dr. Cunningham said there were several strains that could put PANDAS in motion? Do some strains mimic a specific subset of neuronal tissue while other strains mimic neuronal tissue in a more general way? Is it the bacteria or the individual child's brain determining symptomology presentation???

The million dollar question.

 

I don't think that they have typed any strains of strep thought to be responsible for PANDAS yet...but it is well known that only certain strains cause RF and other strains attack the kidneys...

 

Please, someone smarter and more informed than me...chime in!

 

But I often wonder if you were to compare symptoms to same areas, would you be looking at similar presentation...if I had to say focally or diffuse inflammation for my daughter...then I would say her symptoms would probably seem more diffuse too...and we are only and hour and 1/2 from each other.

 

I wouldn't say she was drunk-like...but she just stopped functioning, and didn't seem aware.

Edited July 10, 2010 by Kayanne

[JAG10]

Didn't someone say Dr. Cunningham said there were several strains that could put PANDAS in motion? Do some strains mimic a specific subset of neuronal tissue while other strains mimic neuronal tissue in a more general way? Is it the bacteria or the individual child's brain determining symptomology presentation???

The million dollar question.

 

I don't think that they have typed any strains of strep thought to be responsible for PANDAS yet...but it is well known that only certain strains cause RF and other strains attack the kidneys...

 

Please, someone smarter and more informed that me...chime in!

 

But I often wonder if you were to compare symptoms to same areas, would you be looking at similar presentation...if I had to say focally or diffuse inflammation for my daughter...then I would say her symptoms would probably seem more diffuse too...and we are only and hour and 1/2 from each other.

 

I wouldn't say she was drunk-like...but she just stopped functioning, and didn't seem aware.

 

 

 

I think that's a good hunch, maybe the MAP will shed some light on the subject. Certainly the I-95 corridor looks heavy.

 

Of course, intoxication hits individuals differently. Some get silly/annoying, some in a stupor/forgetful, some anger, argumentative and some violent. All out of their own control.

[sptcmom]

As we all know different areas in the brain perform diferent functions and based upon life span, experiences etc learning pathways, connections and asociations are added to the brain. The brain grows exponentially birth to three with TONS of neuroplasticity or healing capability when surrounding areas take over the additional functions of an injured neighbor neuron. This continues strongly till aout puberty and then neurons not being used die off. Any injury/ insult to the brain is VERY different in presentation in each person especially a child. Only a PET scan can truly and conclusively tell you the true condition of the brain of your child. A PET scan is unnecessary and very expensive and mostly not covered by insurance for Pandas. Also where the injury, inflammation is means not just the anatomical location - Basal ganglia etc- ut also if its grey matter or white matter or the ventricles, or higher cortical level v/s lower brain stem/spinal cord level. I mean there are so many many variations.

I mean Parkinson's disease is a disease of the Basal Ganglia too but totally different from Pandas. Neurotransmitter status, which chemical is higher or lower in the brain in that aprticular area, these also fluctuates based on time of day, hormones etc. So its virtually impossible to pin down the exact presentation of brain insult in any person unless its classic trauma to the exact area whose function is well known. I mean you get infection in the Broca's or Wernicke's areas on MRI you know there will be speech issues, Prefrontal cortex its executive function, cognition etc, frontal cortex is you motor cortex, parietal lobe is your perceptual, occipital lobe is your visual, temporal is predominantly auditory related and so on and so forth.

Edited July 10, 2010 by sptcmom

[JAG10]

We're not talking about brain infection or lesion (damage), we are talking about inflammation w/o damage.

 

We know our children can change from episode to episode, or if in a chronic state graduate symptoms from on area to another. However, it seems each child has a set of primary, core symptoms that are their nemesis and that is what this question is referring to. Yes, my dd10 has had transient tics over the years. She's also had language issues come and go; my favorite was when she wanted a biscuit and asked for a "puff-pucky", classic Wernicke's!!! But her core symptoms over several years have always been behavioral/cognitive/OCD stuck, not organized, not rituals, not tics.

 

Dr. K told me the "behavioral kids" like mine have had a great response to ivig, and so far she has. But why? Is it something about the molecular mimicry of a particular strain or is it more the neurological genetic predisposition of the child or something totally different? Do the physicians and researchers already have a hypothesis? More data collection via survey may at least reveal suspected trends.

 

Of interest, dd10 had a SPECT scan done when she was 7 to examine which part of her brain was over or under active. We suspected the ACG (anterior cingulate gyrus), the gear shift of the brain because she was getting "stuck" all the time and not switching gears. What the scan revealed was diffuse over-activity throughout the entire perimeter and through the center of the brain similar to a bipolar brain, yet she hadn't and never has had grandiose, anger, tantrum or rage issues. The doctor's expectations of her symptoms based on her scans did not match her symptomology.

 

So much yet to learn...........

[sptcmom]

We're not talking about brain infection or lesion (damage), we are talking about inflammation w/o damage.

 

We know our children can change from episode to episode, or if in a chronic state graduate symptoms from on area to another. However, it seems each child has a set of primary, core symptoms that are their nemesis and that is what this question is referring to. Yes, my dd10 has had transient tics over the years. She's also had language issues come and go; my favorite was when she wanted a biscuit and asked for a "puff-pucky", classic Wernicke's!!! But her core symptoms over several years have always been behavioral/cognitive/OCD stuck, not organized, not rituals, not tics.

 

Dr. K told me the "behavioral kids" like mine have had a great response to ivig, and so far she has. But why? Is it something about the molecular mimicry of a particular strain or is it more the neurological genetic predisposition of the child or something totally different? Do the physicians and researchers already have a hypothesis? More data collection via survey may at least reveal suspected trends.

 

Of interest, dd10 had a SPECT scan done when she was 7 to examine which part of her brain was over or under active. We suspected the ACG (anterior cingulate gyrus), the gear shift of the brain because she was getting "stuck" all the time and not switching gears. What the scan revealed was diffuse over-activity throughout the entire perimeter and through the center of the brain similar to a bipolar brain, yet she hadn't and never has had grandiose, anger, tantrum or rage issues. The doctor's expectations of her symptoms based on her scans did not match her symptomology.

 

So much yet to learn...........

Ok, that reply is cold. I feel bad now. I did read the post before replying and am aware the question is inflammation. Yes, I do agree we have a lot to learn as is the case with most diseases involving the brain. I do stand by what I posted. May it be "mere" inflammation or a true injury both classify as an insult to that part of the brain. The symptomatology will be milder but still a version of the functional totality of that part of the brain. There are so many relay or connection pathways in the brain that its almost impossible to identify the add on symptoms or why they occur. After 24 years of experience with peds neuro academic and clincial, I'm still in awe of how complex the human brain is.

Anyways, I'll quit here.

[JAG10]

We're not talking about brain infection or lesion (damage), we are talking about inflammation w/o damage.

 

We know our children can change from episode to episode, or if in a chronic state graduate symptoms from on area to another. However, it seems each child has a set of primary, core symptoms that are their nemesis and that is what this question is referring to. Yes, my dd10 has had transient tics over the years. She's also had language issues come and go; my favorite was when she wanted a biscuit and asked for a "puff-pucky", classic Wernicke's!!! But her core symptoms over several years have always been behavioral/cognitive/OCD stuck, not organized, not rituals, not tics.

 

Dr. K told me the "behavioral kids" like mine have had a great response to ivig, and so far she has. But why? Is it something about the molecular mimicry of a particular strain or is it more the neurological genetic predisposition of the child or something totally different? Do the physicians and researchers already have a hypothesis? More data collection via survey may at least reveal suspected trends.

 

Of interest, dd10 had a SPECT scan done when she was 7 to examine which part of her brain was over or under active. We suspected the ACG (anterior cingulate gyrus), the gear shift of the brain because she was getting "stuck" all the time and not switching gears. What the scan revealed was diffuse over-activity throughout the entire perimeter and through the center of the brain similar to a bipolar brain, yet she hadn't and never has had grandiose, anger, tantrum or rage issues. The doctor's expectations of her symptoms based on her scans did not match her symptomology.

 

So much yet to learn...........

Ok, that reply is cold. I feel bad now. I did read the post before replying and am aware the question is inflammation. Yes, I do agree we have a lot to learn as is the case with most diseases involving the brain. I do stand by what I posted. May it be "mere" inflammation or a true injury both classify as an insult to that part of the brain. The symptomatology will be milder but still a version of the functional totality of that part of the brain. There are so many relay or connection pathways in the brain that its almost impossible to identify the add on symptoms or why they occur. After 24 years of experience with peds neuro academic and clincial, I'm still in awe of how complex the human brain is.

Anyways, I'll quit here.

 

Jodie- it's summer; don't feel cold or bad! We're all cyber-friends here; you don't have to have a medically related resume to have a voice (even though many of us do.) Sometimes parents glean a nugget of info from their visits with the experts that help further bring the puzzle into focus, that's all. As Karen's post indicated, the whole "balance of strain vs brain" debate is not novel, but reworded and resurrected periodically. Although I disagree that it is impossible to discover why certain core symptom clusters occur or respond differently to treatments, I definitely respect and encourage your right to express your opinion. Debate is healthy and the only way we learn. If my reply indicated anything to the contrary, I sincerely apologize.

[kimballot]

Do you think based on presentation of symptoms, that the anti-neuronal antibodies attack a specific focal point in some children's brains and attack more diffusely in others? Or for another reason, brain inflammation occurs focally in some kids and diffusely in others?

 

I was thinking about how some parents post very specific, but horribly severe symptoms in their children that are clearly impairing, but their children's cognitive processing and awareness of what is happening to them seems intact.

 

This is not my dd10. If I had to guess I would say her inflammation is diffuse. If I had to pick one word to describe her most predominant symptoms it would be "intoxicated." Silly, goofy, pleasure-driven, sloppy, difficulty learning, paying attention, focusing, controlling bodily functions, cognitive fog/unawareness. It's a diffuse, overall impairment. Like drunk and equally responsive to Ibuprofen

 

So, if the basal ganglia is analogous to a giant ball of rubber bands, why is it more a case where are all the bands seem to be inflamed in some kids, yet others are having inflammation of very specific bands?

 

I don't know if I'm articulating the question correctly.....

 

This is a good question and it would be neat if there was a study using PET scans to determine brain activity during PANDAS exacerbations... but of course first we have to have a specific way to diagnose PANDAS, then to define an exacerbation.... so we are likely decades away from such a sophisticated study.

 

I can tell you that through my son's 13-years of PANDAS exacerbations, the symptoms have been different from one exacerbation to the next, indicating that different parts of the brain may be affected (or perhaps the infection that triggered the response was different - like mycoplasma vs. strep). When he was younger we saw lots of hyperactivity and compulsive behavior that looked like frontal lobe or basal ganglia. Sometimes we get emotional lability that really looks like limbic system. We've only had tics a handful of times, and most recently it was nearly complete loss of executive functions - similar to a frontal lobe injury. Actually, with his last exacerbation he was HYPOactive - very sluggish. I even wondered if his sinus infection had moved into his frontal lobe, but it appears that was not the case (thankfully)...and what is up with the sensory integrative stuff that comes and goes? Is that brainstem or thalamus involvement???

 

I guess I just wonder if the basal ganglia neurons are the ONLY neurons involved, or if they are just the neurons that have been studied to date.

 

So many questions... science moves so slowly!

Edited July 10, 2010 by kimballot

[sptcmom]

We're not talking about brain infection or lesion (damage), we are talking about inflammation w/o damage.

 

We know our children can change from episode to episode, or if in a chronic state graduate symptoms from on area to another. However, it seems each child has a set of primary, core symptoms that are their nemesis and that is what this question is referring to. Yes, my dd10 has had transient tics over the years. She's also had language issues come and go; my favorite was when she wanted a biscuit and asked for a "puff-pucky", classic Wernicke's!!! But her core symptoms over several years have always been behavioral/cognitive/OCD stuck, not organized, not rituals, not tics.

 

Dr. K told me the "behavioral kids" like mine have had a great response to ivig, and so far she has. But why? Is it something about the molecular mimicry of a particular strain or is it more the neurological genetic predisposition of the child or something totally different? Do the physicians and researchers already have a hypothesis? More data collection via survey may at least reveal suspected trends.

 

Of interest, dd10 had a SPECT scan done when she was 7 to examine which part of her brain was over or under active. We suspected the ACG (anterior cingulate gyrus), the gear shift of the brain because she was getting "stuck" all the time and not switching gears. What the scan revealed was diffuse over-activity throughout the entire perimeter and through the center of the brain similar to a bipolar brain, yet she hadn't and never has had grandiose, anger, tantrum or rage issues. The doctor's expectations of her symptoms based on her scans did not match her symptomology.

 

So much yet to learn...........

Ok, that reply is cold. I feel bad now. I did read the post before replying and am aware the question is inflammation. Yes, I do agree we have a lot to learn as is the case with most diseases involving the brain. I do stand by what I posted. May it be "mere" inflammation or a true injury both classify as an insult to that part of the brain. The symptomatology will be milder but still a version of the functional totality of that part of the brain. There are so many relay or connection pathways in the brain that its almost impossible to identify the add on symptoms or why they occur. After 24 years of experience with peds neuro academic and clincial, I'm still in awe of how complex the human brain is.

Anyways, I'll quit here.

 

Jodie- it's summer; don't feel cold or bad! We're all cyber-friends here; you don't have to have a medically related resume to have a voice (even though many of us do.) Sometimes parents glean a nugget of info from their visits with the experts that help further bring the puzzle into focus, that's all. As Karen's post indicated, the whole "balance of strain vs brain" debate is not novel, but reworded and resurrected periodically. Although I disagree that it is impossible to discover why certain core symptom clusters occur or respond differently to treatments, I definitely respect and encourage your right to express your opinion. Debate is healthy and the only way we learn. If my reply indicated anything to the contrary, I sincerely apologize.

 

^ Its cool ofcourse. Steaming hot here in NJ though yuck.

[MomWithOCDSon]

The only thing I can add are a couple of things that have stuck with me from the Swedo and Cunningham presentations at the AO Conference, along with some "aha moments" of synchronicity in other research.

 

I think it was Swedo's presentation that offered up an MRI or image of the brain, and a sector called the caudate was highlighted as being enlarged/inflamed in the PANDAS and/or Syndeham's Chorea brain as compared to the normal, control brain. Meanwhile, the research on glutamate dysregulation in the brains of kids with OCD as compared to kids without reveal excessive amounts of glutamate in the . . . drumroll please . . . caudate! So, it appears possible that inflammation of the caudate could be associated with PANDAS OCD behaviors.

 

Meanwhile, perhaps its a different sector of the brain/basal ganglia for which inflammation results in the tic behaviors.

 

And, finally, since both OCD and tic disorders are thought to have some genetic component(s), perhaps it is a genetic predisposition that results in the inflammation being more problematic in a certain brain sector and thus why our kids' behaviors can vary so dramatically in terms of type and intensity?

[kimballot]

Thanks - that is very helpful. The caudate is part of the basal ganglia.

 

I wonder if there is ever involvement in other areas (such as abnormal synapse firing) without obvious inflammation.

 

I am looking forward to watching the DVDs when they come in. Thank you for letting us know about the conference!

[Fixit]

Actually, with his last exacerbation he was HYPOactive - very sluggish.

 

That can be an expression too!!!...sometimes my kid just wants to be a couch potatoe...overly so...

but we have been on thyroid med for hypo thryoid a bit out of range for many years...docs said to ignore it...but it continualy stayed out of range ...long story...plus now they are talking or have ....moved the parameters even lower and that would make ds much more out of range....

but i also thought maybe his tics make him tired...or unmotivated as it takes so much to do things...