strep bacteria in the brain

[EmersonAilidh]

I tend to believe that it is the child that is bright. Maybe the genetic makeup of a bright persons brain more closely mimics the strep. You only need to read EmersonAilidh's posts for proof of giftedness! Are you sure you are a teenager?

 

Haha, thank you! Posts like this make my day.

[justinekno]

Does he still answer those questions? I haven't seen much activity.

 

I am not really sure why you think your questions are "stupid" - especially since clearly no one is jumping in with all the answers!

 

This would be interesting to post on Dr. T's website and see if he has an answer.

[justinekno]

My ds doesn't have the dilated pupils. I'm wondering if the majority of PANDAS kids do though?

 

Don't have a sense for that...how much quest. The inside of the skull is full of boney protrusions that the brain does not like coming into contact with in closed-head injury... I don't have a sense for the boundaries or limits of this pandas inflammation. Isn't that supposed to be what the dilated pupils are indicative of? I wonder if dilated pupils are a sign in other brain assaults resulting in swelling? CVA? TBI?

[smartyjones]

It is these faulty anti-neuronal antibodies that are attacking the brain, yes? Not the strep antibodies measured by ASO or DNAse B. If it were "real" strep antibodies getting past the BBB and there was strep there... they could just do their job, right?

 

But these anti-neuronal antibodies have been tricked by ol' elusive strep that is molecularly mimicking brain tissue and saying "ha-ha, you think you're gonna get rid of us, but we've disguised ourselves to look like your own brain and you're attacking the wrong thing

/quote]

 

admittedly, i don't understand anti-neuronal antibodies. that's what cunningham measures, right? i am going to the ocd conference so may have a better understanding after that.

 

so, how do we know the anti-neuronal antibodies are the trouble and not the strep bacteria itself. if the actual "real" strep antibodies can't get past the BBB, they can't attack the strep. so could it be strep in addition or instead of the antibodies?

 

maybe i'll understand better after hearing dr cunningham - ?

[JAG10]

My ds doesn't have the dilated pupils. I'm wondering if the majority of PANDAS kids do though?

 

Don't have a sense for that...how much quest. The inside of the skull is full of boney protrusions that the brain does not like coming into contact with in closed-head injury... I don't have a sense for the boundaries or limits of this pandas inflammation. Isn't that supposed to be what the dilated pupils are indicative of? I wonder if dilated pupils are a sign in other brain assaults resulting in swelling? CVA? TBI?

 

 

I think many kids get dilated pupils when in an episode, but my daughter was chronic so hers were like that all the time. We estimate she had pandas 8 years before treatment. Post ivig, her eyes are a beautiful, normal hazel

[kimballot]

I asked Dr. K about the intelligence issue from a different angle. I wanted to know how he could describe the phenotype of a pandas child as an infant prior to them having had the initial episode. He referred me to his single light switch; one wire in, one wire out; it gets overheated but no problems. Now he said imagine a panel with 500 switches, all those wires going in and out; that gets overheated and BIG problems because there are so many connections. I think he hypothesizes that highly intelligent children are genetically predisposed because they have many more neuronal connections to get overheated, crossed and catastrophe. So, when I wanted to know how he knew my child was fussy, intense, difficult to get to sleep, not particularly cuddly; that is a phenotype of highly intelligent infants.

 

I suspect the "highly intellligent" child and "highly educated" parent describes the current PANDAS phenotype because we are more likely to notice changes in children with higher intellect and because parents with higher education are more likely to search the internet and try to find the answers for their child. My suspicion is that, one day - when we are really able to test for PANDAS- we will see many children from a wide variety of cognitive levels and a wide variety of socioeconomic backgrounds who have PANDAS. ... just my suspicion here

[JAG10]

I asked Dr. K about the intelligence issue from a different angle. I wanted to know how he could describe the phenotype of a pandas child as an infant prior to them having had the initial episode. He referred me to his single light switch; one wire in, one wire out; it gets overheated but no problems. Now he said imagine a panel with 500 switches, all those wires going in and out; that gets overheated and BIG problems because there are so many connections. I think he hypothesizes that highly intelligent children are genetically predisposed because they have many more neuronal connections to get overheated, crossed and catastrophe. So, when I wanted to know how he knew my child was fussy, intense, difficult to get to sleep, not particularly cuddly; that is a phenotype of highly intelligent infants.

 

I suspect the "highly intellligent" child and "highly educated" parent describes the current PANDAS phenotype because we are more likely to notice changes in children with higher intellect and because parents with higher education are more likely to search the internet and try to find the answers for their child. My suspicion is that, one day - when we are really able to test for PANDAS- we will see many children from a wide variety of cognitive levels and a wide variety of socioeconomic backgrounds who have PANDAS. ... just my suspicion here

 

Certainly possible! Do you think the estimated 5% of population will hold true?

[mkur]

I think that the signs of pandas show up easier on a normal intelligent child - kind of hard to miss. If the child already has problems - autism, anxiety etc then it gets harder to see the pandas because of all the other symptoms (noise).

 

If you have a science background and believe in science (chem, bio etc) and I mean cause and effect, then you will not believe the doctors when they say "children just change sometimes" or "the child is smart (meaning smarter than you)" or any other remark. You think cause and effect. Someone did not zap my child.

 

A college degree shows that you can complete something on your own and stick with it. If your child is sick you will keep trying to find an answer and with pandas it is a fight.

 

If you have a college degree hopefully you have a decent insurance plan and can afford to pay for it. You are also financially and mentally able to seek treatment especially those that are out-of-pocket and can afford to travel there to get an answer.

 

I think that pandas is a lot more common than we think. The severe cases cannot be ignored but what about the mild cases or the cases where the child has only one strep episode (no symptoms) and isn't exposed again.

 

Here is another thought: People don't die from RF or SF anymore, those people are still alive and having more children. People are more mobile so their immune systems are being tested like never before. My child has always been sickly. I know that if we lived in third world country he would have died from dehydration. He would get so sick and his body would purge and purge from both ends.

[kimballot]

I think that the signs of pandas show up easier on a normal intelligent child - kind of hard to miss. If the child already has problems - autism, anxiety etc then it gets harder to see the pandas because of all the other symptoms (noise).

 

If you have a science background and believe in science (chem, bio etc) and I mean cause and effect, then you will not believe the doctors when they say "children just change sometimes" or "the child is smart (meaning smarter than you)" or any other remark. You think cause and effect. Someone did not zap my child.

 

A college degree shows that you can complete something on your own and stick with it. If your child is sick you will keep trying to find an answer and with pandas it is a fight.

 

If you have a college degree hopefully you have a decent insurance plan and can afford to pay for it. You are also financially and mentally able to seek treatment especially those that are out-of-pocket and can afford to travel there to get an answer.

 

I think that pandas is a lot more common than we think. The severe cases cannot be ignored but what about the mild cases or the cases where the child has only one strep episode (no symptoms) and isn't exposed again.

 

Here is another thought: People don't die from RF or SF anymore, those people are still alive and having more children. People are more mobile so their immune systems are being tested like never before. My child has always been sickly. I know that if we lived in third world country he would have died from dehydration. He would get so sick and his body would purge and purge from both ends.

 

MKUR - I am SO with you! I really do not think intellect and parental education is part of the true phenotype - just what we are seeing now while recognition of PANDAS is in its infancy. My brother always tells me that if my son were being raised by nearly any other family he would be a sickly kid who was emotionally disturbed and he would have very little future. Sadly, I believe that is true.

 

I completely agree with your thoughts on people not dying from RF anymore in developed countries - thereby increasing the genepool for potential PANDAS kids. SO true! I work with many people from India who tell me about all the children who have RF and how common it is for kids to die at a young age .... therefore...no genes to pass on.

 

We have so much to learn... and so many kids to help.

Edited July 15, 2010 by kimballot

[Kayanne]

I think that the signs of pandas show up easier on a normal intelligent child - kind of hard to miss. If the child already has problems - autism, anxiety etc then it gets harder to see the pandas because of all the other symptoms (noise).

 

If you have a science background and believe in science (chem, bio etc) and I mean cause and effect, then you will not believe the doctors when they say "children just change sometimes" or "the child is smart (meaning smarter than you)" or any other remark. You think cause and effect. Someone did not zap my child.

 

A college degree shows that you can complete something on your own and stick with it. If your child is sick you will keep trying to find an answer and with pandas it is a fight.

 

If you have a college degree hopefully you have a decent insurance plan and can afford to pay for it. You are also financially and mentally able to seek treatment especially those that are out-of-pocket and can afford to travel there to get an answer.

 

I think that pandas is a lot more common than we think. The severe cases cannot be ignored but what about the mild cases or the cases where the child has only one strep episode (no symptoms) and isn't exposed again.

 

Here is another thought: People don't die from RF or SF anymore, those people are still alive and having more children. People are more mobile so their immune systems are being tested like never before. My child has always been sickly. I know that if we lived in third world country he would have died from dehydration. He would get so sick and his body would purge and purge from both ends.

Totally agree...and you put it so much better than I ever could...I've been trying to get this sentiment out to friends and family...and it just seems to go in circles....

[EmersonAilidh]

My ds doesn't have the dilated pupils. I'm wondering if the majority of PANDAS kids do though?

 

Don't have a sense for that...how much quest. The inside of the skull is full of boney protrusions that the brain does not like coming into contact with in closed-head injury... I don't have a sense for the boundaries or limits of this pandas inflammation. Isn't that supposed to be what the dilated pupils are indicative of? I wonder if dilated pupils are a sign in other brain assaults resulting in swelling? CVA? TBI?

 

My eyes are really really dark so it's pretty difficult to see my pupils in photos, but here are two.

The first is from last March, about a week before I had my first cataplectic, sleep paralysis, & depersonalization episodes. (I'm on the left)

The second is from November, when my Narcoleptic symptoms were at their absolute worst. Staying home from school multiple times a week because I couldn't wake up & passing out in class when I did go.

My pupils have always been pretty big.. This actually makes a lot of sense now.

 

 

http://sphotos.ak.fbcdn.net/hphotos-ak-snc...7_1102633_n.jpg

 

http://sphotos.ak.fbcdn.net/hphotos-ak-snc...5_5095052_n.jpg

 

_______________________________________________________________

 

Quick edit.

Just read the post about the "chronic" girl. When exactly does P.A.N.D.A.S. become "chronic"?

Edited July 15, 2010 by EmersonAilidh

[JAG10]

My ds doesn't have the dilated pupils. I'm wondering if the majority of PANDAS kids do though?

 

Don't have a sense for that...how much quest. The inside of the skull is full of boney protrusions that the brain does not like coming into contact with in closed-head injury... I don't have a sense for the boundaries or limits of this pandas inflammation. Isn't that supposed to be what the dilated pupils are indicative of? I wonder if dilated pupils are a sign in other brain assaults resulting in swelling? CVA? TBI?

 

My eyes are really really dark so it's pretty difficult to see my pupils in photos, but here are two.

The first is from last March, about a week before I had my first cataplectic, sleep paralysis, & depersonalization episodes. (I'm on the left)

The second is from November, when my Narcoleptic symptoms were at their absolute worst. Staying home from school multiple times a week because I couldn't wake up & passing out in class when I did go.

My pupils have always been pretty big.. This actually makes a lot of sense now.

 

 

http://sphotos.ak.fbcdn.net/hphotos-ak-snc...7_1102633_n.jpg

 

http://sphotos.ak.fbcdn.net/hphotos-ak-snc...5_5095052_n.jpg

 

_______________________________________________________________

 

Quick edit.

Just read the post about the "chronic" girl. When exactly does P.A.N.D.A.S. become "chronic"?

 

For my dd10, this probably began very young, around 2 y.o. Depending on the symptoms the child exhibits, it can be very difficult to distinguish in this early onset population. But looking back, we remember normal times interrupted with "periods of disequilibrium" until she was 5. She had late onset hyperactivity at 6. February of first grade, she was 7, was when myco-p piled onto the scene and after that, she became "chronic" which means there were no more identifiable normal or better periods of time; just bad and really bad.

 

Dr. T has a theory of toll-like receptors becoming overloaded as each infection piles on, that is one line of thinking. By the time she was 7, that was after 5 years of untreated pandas (bcs we had no idea, she like you is asymptomatic to strep.) Fortunately, having had untreated pandas for over 8 years does not appear to be impeding her recovery now; she thus far has responded very well to ivig.

 

There are definitely other children whose parents post who exhibit chronic pandas symptoms. Based on the book, it would seem Sammy was chronic from his onset (10), I think?

[kimballot]

For my dd10, this probably began very young, around 2 y.o. Depending on the symptoms the child exhibits, it can be very difficult to distinguish in this early onset population. But looking back, we remember normal times interrupted with "periods of disequilibrium" until she was 5. She had late onset hyperactivity at 6. February of first grade, she was 7, was when myco-p piled onto the scene and after that, she became "chronic" which means there were no more identifiable normal or better periods of time; just bad and really bad.

 

Dr. T has a theory of toll-like receptors becoming overloaded as each infection piles on, that is one line of thinking. By the time she was 7, that was after 5 years of untreated pandas (bcs we had no idea, she like you is asymptomatic to strep.) Fortunately, having had untreated pandas for over 8 years does not appear to be impeding her recovery now; she thus far has responded very well to ivig.

 

There are definitely other children whose parents post who exhibit chronic pandas symptoms. Based on the book, it would seem Sammy was chronic from his onset (10), I think?

Glad to hear that your daughter is responding well to IVIG. We, too, have battled PANDAS for since infancy with ds 13, but have not gottent to IVIG yet.

 

Thanks for posting!

[EmersonAilidh]

For my dd10, this probably began very young, around 2 y.o. Depending on the symptoms the child exhibits, it can be very difficult to distinguish in this early onset population. But looking back, we remember normal times interrupted with "periods of disequilibrium" until she was 5. She had late onset hyperactivity at 6. February of first grade, she was 7, was when myco-p piled onto the scene and after that, she became "chronic" which means there were no more identifiable normal or better periods of time; just bad and really bad.

 

Dr. T has a theory of toll-like receptors becoming overloaded as each infection piles on, that is one line of thinking. By the time she was 7, that was after 5 years of untreated pandas (bcs we had no idea, she like you is asymptomatic to strep.) Fortunately, having had untreated pandas for over 8 years does not appear to be impeding her recovery now; she thus far has responded very well to ivig.

 

There are definitely other children whose parents post who exhibit chronic pandas symptoms. Based on the book, it would seem Sammy was chronic from his onset (10), I think?

 

This post made me sad because it sounds like me. :/

I didn't realize it was called "chronic". That just sounds so bad. I've had compulsions & one twitch my entire life. My family thinks that I've had P.A.N.D.A.S. since I could talk (about two), but I wasn't treated until I was ten or eleven.

 

Glad to hear about your daughter responding well!

Edited July 15, 2010 by EmersonAilidh

[wornoutmom]

Just thought I'd chime in because my ds actually did have a PET scan that showed inflammation of both the basil ganglia and thalumus. The thalumus information surprised me but the more I read up on it it would account for troubles with enuresis and sleep disturbance.

 

 

JAG - i guess that does make sense that the antibodies could just do their job correctly and attack the strep -- then my head starts to spin.

 

those descriptions are of the involvement of the frontal lobe and troublesome with injury. i meant it reads like a list of my son's troubles.

 

does anyone know if and why it's generally the basal ganglia that we talk about? have other areas been studied also as being affected by the antineural antibodies?

 

the diffuse impairment issue -- i've always wondered how the incident of "giftedness" fits in. dr t seems to contend it's that the child may be of higher educated/intelligent parents who may notice and seek treatment and therefore the child may be inherently more intellgent than an average child. i seem to think it's the child. i wonder if the swelling of certain areas of the brain not only influence troublesome behaviors put also engage other areas that result in higher brain functioning of certain skills.

 

I know what you mean about the diffuse impairment and the frontal lobe. With this last exacerbation my son looked just like a kid with a frontal lobe head injury - all exectutive functions and motivation were gone. He also had a great deal of trouble with memory - which is usually seen more in the hippocampus - another part of the brain closer to the temoral region on both sides. Since sinus surgery and antibiotics he is perky, on task, and motivated. We will see how he does in school this year.

 

So... I too wonder if more than just the basal ganglia is involved. This is a question for researchers and I hope someone does PET scans some day to look at function - not just anatomical swelling. It seems to me that the brain can have neuronoal misfiring with excessive cam kinase II in areas other than the basal ganglia - or perhaps the basal ganglia is most susceptible because it closest to the breach in the blood-brain barrer??

 

So many questions.... We need more research!