How to explain to others what PANADAS IS..

[Ann280]

As everyone here has to do many many times i am having to deal with explaining what PANDAS is to to family, friends and other moms. I just can't remember everything. I sometimes tell everyone to look online and read further. Does anyone have a really explanation that others could understand more simply. My friend keeps on saying that it's very hard to get past the blood barrier in the brain..does pandas get past that? She asked because she could not understand where the infection is located. The basil Ganglia (sp). Antibiotics helped my daughter after 3 full days. Each time someone asks me a more detailed question , at times I feel stupid because i don't always know the answer.

[EAMom]

As everyone here has to do many many times i am having to deal with explaining what PANDAS is to to family, friends and other moms. I just can't remember everything. I sometimes tell everyone to look online and read further. Does anyone have a really explanation that others could understand more simply. My friend keeps on saying that it's very hard to get past the blood barrier in the brain..does pandas get past that? She asked because she could not understand where the infection is located. The basil Ganglia (sp). Antibiotics helped my daughter after 3 full days. Each time someone asks me a more detailed question , at times I feel stupid because i don't always know the answer.

 

A pediatric rhuematologist we once saw called PANDAS "rheumatic fever of the brain"...which is an easy explanation if your friends know what rheumatic fever is!

 

RE the blood brain barrier: That is thought to be one of the problems with PANDAS kids...they have an open blood brain barrier. As far as I know, the INFECTION isn't in the brain, but the body produces antibodies (in response to infection which could be in the throat, sinuses, gut) and these antibodies can cross through the blood brain barrier into the brain. These well-intentioned antibodies then mistake the basal ganglia as "foreign" (this error in identificaiton is aka "molecular mimicry"). This is where the symptoms come from...the antibodies attacking "self" (basal ganglia) and because they mistake it as "foreign" (strep or other infection).

 

RE molecular mimicry/autoimmune reaction. Think of the antibodies as guard dogs. These dogs are trained to "attack" burglars/infection (men dressed in black with black caps). But, the dogs get confused, and start to see non-burglars (friends/parts of your own body) as "foreign" b/c you have some black-cap wearing friends (just like how strep and the basal ganglia might have a similar protein on their surfaces). These black-cap wearing friends (proteins on the basal ganglia) look enough like the burglars (strep or other infection) that the dogs (antibodies) get confused. The interesting thing is (in the case of PANDAS) if the blood brain barrier was closed, then the dogs/antibodies wouldn't be able to get to the black-cap wearing friends/ basal ganglia, and the problem would be solved. This may be one way IVIG helps, it might close the blood brain barrier.

 

I hope that explanation wasn't too confusing!

 

More on the BBB: 1)GABHS associated toxins that can alter the permiability of the blood brain barrier. In other words, a strep infection might open up the blood brain barrier, even if it was previously closed. 2) stress can also open the blood brain barrier (which may explain why some parents have associated excaerbations with stressful events).

 

Here is more on the blood brain barrier from Buster http://www.latitudes.org/forums/index.php?showtopic=5144

 

Explanation of how the Blood-brain barrier is crossed

 

In November 2009, Bartholomäus et al unlocked a key part of explaining how the blood-brain-barrier can be breached. Using mice similar to Yaddanapudi (i.e., bred to have high T-cell rates and prone to blood-brain barrier disruption), they were able to watch individual T-cells cross the blood-brain-barrier. Once across, the T-cells produced inflammation recruiting other T-cells to the site of the breach. This could explain how antibodies in the blood stream cross the blood-brain barrier which has been the missing element since Husby's initial findings over three decades ago.

 

 

Th17, Autoimmunity and the blood brain barrier

 

 

Recently, Wang et al published a remarkable finding that repeated nasal innoculation with live (or dead) GABHS produced Th17 cell response in mice. Th17 was recently identified in 2006 (see Annunziato et al ) and is highly implicated in auto-immune disorders.

 

In 2007, Kebir et al published the paper "Human TH17 lymphocytes promote blood-brain barrier disruption and central nervous system inflammation" where it was shown that these Th17 cells are highly pro-inflammatory and promote blood-brain barrier disruption. Perhaps this is the missing link in how auto-antibodies are crossing the blood brain barrier (i.e., GABHS carriage triggers Th17, GABHS infection triggers anti-neuronal antibodies, Th17 disrupts the BBB allowing anti-neuronal antibodies (or B/T-cells) to cross). I certainly hope more research is done here.

 

While this is a mouse model and may not apply to humans, the study is noteworthy because only carriage was needed. This may explain why an apparent "allergic" reaction is seen in some children -- i.e., that only colonization is necessary on subsequent exposure and not infection.

Edited April 8, 2011 by EAMom

[dcmom]

For a quick explanation to a teacher or friend/family member, I say:

 

They have an autoimmune disorder, triggered by strep and other illnesses, that can cause neuropsych symptoms such as ocd, anxiety, anorexia, cognitive issues, etc.

 

If I delve further than that, I say:

 

They have an autoimmune disorder called pandas, pediatric autoimmune neuropsychiatric disorder associated with streptococcus (this can be enough to glaze them over so no further discussion is needed). It is thought to happen in kids who have a genetic predisposition (maybe rheumatic heart disease or sydenham's chorea in family) and get (possibly certain strains of) strep throat. The strep triggers an autoimmune reaction. The child's antibodies mistake the basal ganglia portion of the brain for strep (through a process called molecular mimicry) and attack it causing inflammation. This inflammation is the cause of symptoms which include but are not limited to : tics, ocd, adhd, anorexia, anxiety, sleep disturbances, cognitive difficulties, urinary frequency.

 

I will add. After the initial onset, unfortunately, this autoimmune process can be triggered by other things such as any illness, vaccines, allergies, anything that engages the immune system.

 

I also add: the good news is, there is a lot of new information being studied, and there is treatment.

 

I tell them that we treat pandas in two ways- first and foremost is medical intervention. We use prophylactic antibiotics to help prevent strep infections. We are very vigilant about their health. If needed we use immune dampening therapies: steroids and plasmapheresis. We also see a therapist to help give them tools to cope while waiting for medical intervention to work.

 

If you have doubters- I do not leave any room for questioning. I shut it down. I talk VERY authoritatively, but also matter of factly to most people- and really have never had an issue.

 

Have you read the new paper by Murphy, Leckman etc- "A way forward"- it should be linked at the top- I think it is a great overview.

[Kayanne]

For very general purposes, I've started telling people that my daughter gets neurological complications from a strep infection.

[AmySLP]

"They have an autoimmune disorder called pandas, pediatric autoimmune neuropsychiatric disorder associated with streptococcus (this can be enough to glaze them over so no further discussion is needed)".

 

dcmom- you said it all here! Isn't it so true-rattle this off and often you've said enough-just has an authoritative ring to it!

[Ann280]

For a quick explanation to a teacher or friend/family member, I say:

 

They have an autoimmune disorder, triggered by strep and other illnesses, that can cause neuropsych symptoms such as ocd, anxiety, anorexia, cognitive issues, etc.

 

If I delve further than that, I say:

 

They have an autoimmune disorder called pandas, pediatric autoimmune neuropsychiatric disorder associated with streptococcus (this can be enough to glaze them over so no further discussion is needed). It is thought to happen in kids who have a genetic predisposition (maybe rheumatic heart disease or sydenham's chorea in family) and get (possibly certain strains of) strep throat. The strep triggers an autoimmune reaction. The child's antibodies mistake the basal ganglia portion of the brain for strep (through a process called molecular mimicry) and attack it causing inflammation. This inflammation is the cause of symptoms which include but are not limited to : tics, ocd, adhd, anorexia, anxiety, sleep disturbances, cognitive difficulties, urinary frequency.

 

I will add. After the initial onset, unfortunately, this autoimmune process can be triggered by other things such as any illness, vaccines, allergies, anything that engages the immune system.

 

I also add: the good news is, there is a lot of new information being studied, and there is treatment.

 

I tell them that we treat pandas in two ways- first and foremost is medical intervention. We use prophylactic antibiotics to help prevent strep infections. We are very vigilant about their health. If needed we use immune dampening therapies: steroids and plasmapheresis. We also see a therapist to help give them tools to cope while waiting for medical intervention to work.

 

If you have doubters- I do not leave any room for questioning. I shut it down. I talk VERY authoritatively, but also matter of factly to most people- and really have never had an issue.

 

Have you read the new paper by Murphy, Leckman etc- "A way forward"- it should be linked at the top- I think it is a great overview.

 

Thanks that sounds really good. My friend asked about the blood brain barrier and said well if it passes the blood brain barrier why don't they get more serious complications like meningitis? Also how do I read the new paper like you mentioned?

[airial95]

Ann - remember, it's not the infection itself that crosses the BBB, it's the antibodies. Our kids problems aren't caused by the bacteria, but by their bodies reaction to the bacteria.

 

That might help your friend understand.

 

That said, here is my nickel tour of how I explain it. I too always make the comparison to RF first, because people tend to understand the seriousness of that. I also "dumb it down" to make it easy to understand, so some details may be blurry, but it gets the job done!

 

I say that he has an "autoimmune condition that is similar to rheumatic fever, in rheumatic fever, when a kid gets strep, the bodies immune system mistake the heart for strep and attack the heart. In PANDAS, it's similar, except instead of attacking the heart, the immune system launches the same attack on the basal ganglia in the brain - the part of the brain that's involved with control and where things like OCD, Tourettes, ADD, ODD and others are centered. The body's attack causes those symptoms."

 

If they ask if he'll outgrow it, I keep the comparison to RF and say just "like kids with RF, they believe that at some point in early adulthood the immune system reboots itself and minimizes the risk, but it will be a lifelong concern."

 

If they question the treatment - I keep the RF connection - "just like with RF, long term abx to help keep them from catching strep is the main defense we have. We also use therapy to help with the symptom flares."

 

If its someone who is medically astute enough to make the BBB connection - I don't really sugar coat things "In PANDAS kids, the BBB becomes inflammed, either from the actual infection or the autoimmune response. They're still doing research on PANDAS and this is one of the areas still being looked at. They're not sure why PANDAS kids are predisposed to this inflammation. But there is a connection with the degree of inflamation and how severe the reaction is. Which is why common anti-inflammatories help reduce symptoms drastically."

 

In the 18 months since our dx, this is the type of description that I've found to work best. I've even explained it to doctors/nurses that we know this way, and they've all found it facinating, went and researched more, and none have come back as naysayers. Even if they bring up the contradictory studies, they are aware of both sides of the argument and can agree that more study is needed and if the treatments work, there's something to be said for that.

Edited April 11, 2011 by airial95