IVIG and Lab questions

[nicklemama]

We've been wondering ourselves about IVIG. I resisted it when DS was first diagnosed. I kind of wish I had just gone for it. I wanted to see if abx would be the ticket. Well, 5 months later, its not. He did great the first two months on abx. Now, he see saws. We've had changes in abx. I don't really see much difference. Right now, he is functional. I know kids here who are much worse off then he. He's always been able to function at school, although I don't know how. His attention and hyperactivity were small problems. His behavior before abx was nearly intolerable at home and it kept us from doing so many things as a family. I think I have a mild form of PTSD from living through the exorcist behaviors. When I think I see them gearing up again, its nearly more than I can bear.

 

Its been nearly 1.5 yrs since his first episode. I've come to the conclusion that we need to act now before its too late. DS is 7. I do not want these behaviors to become ingrained in him. We are seeing Dr K in 3 weeks.

[ma2ar2rm2]

Everyone that knows me knows I am a HUGE proponent of IVIG, although I do recognize the risks and don't fault anyone for being cautious. I think most of the risks stem from the potential for a bad reaction or blood-borne infection and I'm not aware of any cases personally where IVIG made PANDAS permanently worse. I'm sure they're out there (as it seems just about anything is possible with this disease), but I have to think it would be very rare. There is a test that can be done before to rule out allergic reactions.

 

I do believe that the longer those PANDAS pathways and channels are left open, the harder they are to close and there are plenty on here who have multiple IVIG's with slow progress. The sooner, the better with IVIG, if you ask me.

 

If one of my other children were to be diagnosed, I would push for HD abx and oral steroids first, but if they weren't back to 80% of their baseline within a month, I wouldn't hesitate to go to IVIG. I think the benefits of IVIG are clearly stronger, longer-lasting, and more immuno-modulating (corrective). Many even question if abx have immuno-modulating effects, although I personally believe they do at high-enough doses.

What would your oppion be if your child with in a month of antibiotic was at 90% but then got sick again and an incress are antibiotic took her back to 90% only a few months later got sick again and went back down to 75%

I think my dd since 1st starting to treat for PANDAS with antibiotics back in May 2010 keeps jumping up and down between 75% to 95% I can't say she ever really got 100% better cuz everytime she is exposed to something she gets mild symptoms.. but even at that time I say she is about 85 to 90% but when she gets sick.. it just goes down hill.

 

Would IVIG stop that??? could she get to 99 or 100% with IVIG and stay there... or would it be like it is on the antibiotic where when exposed she gets mild symptoms and when she gets sick it gets bad???

This is my question...

 

That being said.. her immunologist told me she would be willing to treat her with IVIG if I wanted to go that route(saw this doctor today) Though she has never used IVIG for PANDAS my dd is her 1st PANDAS child.. she said she would want to see what Dr K and Dr C and the others are doing.. but she would be willing to do it for us...

 

Now I don't know what to do...

[EAMom]

That's why we did IVIG...we were drastically better (versus crisis situation anorexia in 2nd grade) with full-strength long term antibiotics...but dd reacted to non-strep illnesses and strep exposure...and we could see her baseline was changing.

[JenniferG]

She is on Augmentin 600mg 2x/d. asis her twin brothers...one is and the other on Azith because of an allergy. They all just keep passing it back and forth. We have all been tested and are negative. Although dad and I both battle with chronic sinusitis. This last time (about 2 weeks ago) she and her brothers are VERY slow to recover. And each time she gets infected her symptoms are the same but come out differently....now she has some hyperactivity, her OCD is about her hair instead of getting dressed...etc. Dr. B. said asked to have it done last year. But, again, if we have it done and she is exposed, are you back to square one and if so, they why not continue abx? It seems like the abx are short lived....Azith works for 6 months then we need to change to Augmentin, the back to Azith. Her ASO neg, CBC nml, Lyme neg.

[ma2ar2rm2]

That's why we did IVIG...we were drastically better (versus crisis situation anorexia in 2nd grade) with full-strength long term antibiotics...but dd reacted to non-strep illnesses and strep exposure...and we could see her baseline was changing.

How long ago has it been since you did the IVIG and how is your dd doing these days.. Does she still get symptoms to exposure or non strep illnesses? Did it take 1, 2 or more IVIG treatments???

[JenniferG]

That's why we did IVIG...we were drastically better (versus crisis situation anorexia in 2nd grade) with full-strength long term antibiotics...but dd reacted to non-strep illnesses and strep exposure...and we could see her baseline was changing.

That is the same for my dd. She is never really 100%. Maybe 85-90 then gets exposed and it all goes down hill. Will IVIG treat that?

[EAMom]

Have you (grownups) been on antibiotics? Maybe you guys have strep in your sinuses.

 

Also, maybe your kids aren't really clearing on the Augmentin (or Azith.)...and it seems like they are passing it around, but it is one long infection?

Edited March 17, 2011 by EAMom

[eljomom]

This just still goes back to my big question----maybe the infections are cleared, and it's the autoimmune issue at hand. The immune system thinks the brain is an antigen and keeps making auto-antibodies, because the brain isn't going anywhere....and it's these autoantibodies that cause the issues and symptoms, right??

[JenniferG]

This just still goes back to my big question----maybe the infections are cleared, and it's the autoimmune issue at hand. The immune system thinks the brain is an antigen and keeps making auto-antibodies, because the brain isn't going anywhere....and it's these autoantibodies that cause the issues and symptoms, right??

I need help understanding that....

[eljomom]

JenniferG---I will try to explain...not sure I am correct in any way, but basing it on what I have read, etc...correct me if I'm wrong anyone...

 

Pandas is an autoimmune response to strep (or some other pathogen) in which the immune system mistakenly thinks an area in the brain (basal ganglia) is strep (due to molecular mimicry), causing inflammation, which then causes problems with signaling of dopamine, thus the symptoms.

 

Now here's where I get stumped---if the infection clears, I think in some people the body stops pumping out the auto-antibodies, and remission occurs until the next immune assault. I think in other people, once the infection clears, the body still sees the brain as an antigen, and keeps making auto-antibodies. And maybe in some people, there really is chronic infection. I truly don't think it's that the body can't eliminate the infection though...that would be immune deficiency, right? It's auto-immunity at play here. I just really don't know....sorry if I'm confusing you more

[JenniferG]

JenniferG---I will try to explain...not sure I am correct in any way, but basing it on what I have read, etc...correct me if I'm wrong anyone...

 

Pandas is an autoimmune response to strep (or some other pathogen) in which the immune system mistakenly thinks an area in the brain (basal ganglia) is strep (due to molecular mimicry), causing inflammation, which then causes problems with signaling of dopamine, thus the symptoms.

 

Now here's where I get stumped---if the infection clears, I think in some people the body stops pumping out the auto-antibodies, and remission occurs until the next immune assault. I think in other people, once the infection clears, the body still sees the brain as an antigen, and keeps making auto-antibodies. And maybe in some people, there really is chronic infection. I truly don't think it's that the body can't eliminate the infection though...that would be immune deficiency, right? It's auto-immunity at play here. I just really don't know....sorry if I'm confusing you more

Thank you very much! So if that's the case,then, technically, IVIG should help....on paper anyway. Right?

[TexasDad]

Everyone that knows me knows I am a HUGE proponent of IVIG, although I do recognize the risks and don't fault anyone for being cautious. I think most of the risks stem from the potential for a bad reaction or blood-borne infection and I'm not aware of any cases personally where IVIG made PANDAS permanently worse. I'm sure they're out there (as it seems just about anything is possible with this disease), but I have to think it would be very rare. There is a test that can be done before to rule out allergic reactions.

 

I do believe that the longer those PANDAS pathways and channels are left open, the harder they are to close and there are plenty on here who have multiple IVIG's with slow progress. The sooner, the better with IVIG, if you ask me.

 

If one of my other children were to be diagnosed, I would push for HD abx and oral steroids first, but if they weren't back to 80% of their baseline within a month, I wouldn't hesitate to go to IVIG. I think the benefits of IVIG are clearly stronger, longer-lasting, and more immuno-modulating (corrective). Many even question if abx have immuno-modulating effects, although I personally believe they do at high-enough doses.

What would your oppion be if your child with in a month of antibiotic was at 90% but then got sick again and an incress are antibiotic took her back to 90% only a few months later got sick again and went back down to 75%

I think my dd since 1st starting to treat for PANDAS with antibiotics back in May 2010 keeps jumping up and down between 75% to 95% I can't say she ever really got 100% better cuz everytime she is exposed to something she gets mild symptoms.. but even at that time I say she is about 85 to 90% but when she gets sick.. it just goes down hill.

 

Would IVIG stop that??? could she get to 99 or 100% with IVIG and stay there... or would it be like it is on the antibiotic where when exposed she gets mild symptoms and when she gets sick it gets bad???

This is my question...

 

That being said.. her immunologist told me she would be willing to treat her with IVIG if I wanted to go that route(saw this doctor today) Though she has never used IVIG for PANDAS my dd is her 1st PANDAS child.. she said she would want to see what Dr K and Dr C and the others are doing.. but she would be willing to do it for us...

 

Now I don't know what to do...

 

IVIg goes further to get the child back to 100% or as close as possible. As I said, its healing effects are stronger and longer-lasting.

 

To me, my son isn't completely functional unless he's 90%+. Anything less than that and he still has enough ups and downs and difficulty focusing to keep him away from school and other activities from time to time. That, to me, is unacceptable. At 90%+ (really 95%+), he is able to manage it pretty much 100%. We won't stop until that becomes the new baseline and my gut tells me he will eventually get to 99-100%.

 

In your case, I would definitely do IVIg if the abx aren't consistently bringing her back to 95%+.

[TexasDad]

JenniferG---I will try to explain...not sure I am correct in any way, but basing it on what I have read, etc...correct me if I'm wrong anyone...

 

Pandas is an autoimmune response to strep (or some other pathogen) in which the immune system mistakenly thinks an area in the brain (basal ganglia) is strep (due to molecular mimicry), causing inflammation, which then causes problems with signaling of dopamine, thus the symptoms.

 

Now here's where I get stumped---if the infection clears, I think in some people the body stops pumping out the auto-antibodies, and remission occurs until the next immune assault. I think in other people, once the infection clears, the body still sees the brain as an antigen, and keeps making auto-antibodies. And maybe in some people, there really is chronic infection. I truly don't think it's that the body can't eliminate the infection though...that would be immune deficiency, right? It's auto-immunity at play here. I just really don't know....sorry if I'm confusing you more

 

Great explanation. Let us not forget, however, that the biggest factor at play here is a compromised BBB.

 

Strep infections are just about as common as colds and flu, yet only a very few develop PANDAS. Why? It's pretty obvious to me that when the average person gets Strep, the BBB remains intact and the antibodies never gain access to the basal ganglia and the auto-immune response is never developed. Theoretically (and I think practically as well), once the integrity of the BBB is restored PANDAS goes away completely.

 

You can't eradicate Strep and some people are genetically coded to develop PANDAS once and only if the antibodies cross the BBB. If we could pick one thing to fix and that one thing was preventing compromises in the BBB, PANDAS could be cured or prevented in every case.

 

As always, I'm willing to consider information to the contrary. This is the way I see it.

[eljomom]

Okay, that makes sense....so are you thinking that the BBB is STILL compromised in pandas kids? Especially the ones who no longer remit...like us, who's ocd started a couple years ago...may have been more up and down, but once the tics started this summer, they have NOT stopped. Wonder if BBB is STILL compromised???

 

 

JenniferG---I will try to explain...not sure I am correct in any way, but basing it on what I have read, etc...correct me if I'm wrong anyone...

 

Pandas is an autoimmune response to strep (or some other pathogen) in which the immune system mistakenly thinks an area in the brain (basal ganglia) is strep (due to molecular mimicry), causing inflammation, which then causes problems with signaling of dopamine, thus the symptoms.

 

Now here's where I get stumped---if the infection clears, I think in some people the body stops pumping out the auto-antibodies, and remission occurs until the next immune assault. I think in other people, once the infection clears, the body still sees the brain as an antigen, and keeps making auto-antibodies. And maybe in some people, there really is chronic infection. I truly don't think it's that the body can't eliminate the infection though...that would be immune deficiency, right? It's auto-immunity at play here. I just really don't know....sorry if I'm confusing you more

 

Great explanation. Let us not forget, however, that the biggest factor at play here is a compromised BBB.

 

Strep infections are just about as common as colds and flu, yet only a very few develop PANDAS. Why? It's pretty obvious to me that when the average person gets Strep, the BBB remains intact and the antibodies never gain access to the basal ganglia and the auto-immune response is never developed. Theoretically (and I think practically as well), once the integrity of the BBB is restored PANDAS goes away completely.

 

You can't eradicate Strep and some people are genetically coded to develop PANDAS once and only if the antibodies cross the BBB. If we could pick one thing to fix and that one thing was preventing compromises in the BBB, PANDAS could be cured or prevented in every case.

 

As always, I'm willing to consider information to the contrary. This is the way I see it.

[TexasDad]

Okay, that makes sense....so are you thinking that the BBB is STILL compromised in pandas kids? Especially the ones who no longer remit...like us, who's ocd started a couple years ago...may have been more up and down, but once the tics started this summer, they have NOT stopped. Wonder if BBB is STILL compromised???

 

 

JenniferG---I will try to explain...not sure I am correct in any way, but basing it on what I have read, etc...correct me if I'm wrong anyone...

 

Pandas is an autoimmune response to strep (or some other pathogen) in which the immune system mistakenly thinks an area in the brain (basal ganglia) is strep (due to molecular mimicry), causing inflammation, which then causes problems with signaling of dopamine, thus the symptoms.

 

Now here's where I get stumped---if the infection clears, I think in some people the body stops pumping out the auto-antibodies, and remission occurs until the next immune assault. I think in other people, once the infection clears, the body still sees the brain as an antigen, and keeps making auto-antibodies. And maybe in some people, there really is chronic infection. I truly don't think it's that the body can't eliminate the infection though...that would be immune deficiency, right? It's auto-immunity at play here. I just really don't know....sorry if I'm confusing you more

 

Great explanation. Let us not forget, however, that the biggest factor at play here is a compromised BBB.

 

Strep infections are just about as common as colds and flu, yet only a very few develop PANDAS. Why? It's pretty obvious to me that when the average person gets Strep, the BBB remains intact and the antibodies never gain access to the basal ganglia and the auto-immune response is never developed. Theoretically (and I think practically as well), once the integrity of the BBB is restored PANDAS goes away completely.

 

You can't eradicate Strep and some people are genetically coded to develop PANDAS once and only if the antibodies cross the BBB. If we could pick one thing to fix and that one thing was preventing compromises in the BBB, PANDAS could be cured or prevented in every case.

 

As always, I'm willing to consider information to the contrary. This is the way I see it.

 

Basically, yes. Either the BBB's continue to be at least intermittently compromised or the antibodies that crossed originally hang out for extended periods of time or indefinitely. Even for IVIg to work, it would seem to me that those antibodies would have to cross the BBB to suppress the activity of the Strep antibodies to have any effect. For remission to occur, the Strep antibodies that crossed have to taper off and new antibodies can't be produced or permitted to cross. Who knows? Maybe if any of us got a Strep infection coupled with a compromised BBB we would all get PANDAS.

 

I am not aware of any tests that can tell us if the BBB is compromised or not, when it happened, what caused it, or if it is in the process of healing, etc. A reliable way to monitor all that and heal/prevent any compromises might just get us our cure. Not saying that would be the only possible cure, though.

 

Again, just the way I see it.