Saw Dr.B. Today, confused

[LNN]

so - i'm missing something in connecting the dots. . . it's not necessarily contradictory viewpoints -- but different in the definition of success? so swedo could have considered one ivig 'successful' with a child being 70% better and then close the book on it....whereas in the same case, dr b would consider that child had further to go and would do more ivig? is there still a contradiction in that she would not think further ivig would make any difference and he believes it will? and is there contradiction in how the immune system reacts in the future?

 

is there some standard in when a child is not doing poorly enough to warrant ivig? has that basically been the parent's call? (i know that sounds ridiculous but do you know what i mean?)

 

i've never been able to grasp something about ivig -- it makes perfect sense to me if you were to go on a regular basis -- it the one, two or even three times that i can't grasp. maybe it's the supplementing antibodies that makes sense and i can't get the shutting down the bone marrow -- ?? and then where does the BBB fit in?

I think it is more than just semantics. My understanding - and I could be wrong - is that Dr Swedo, Leckman, Dr L et al do not speak about IVIG as a permanent cure - rather a treatment to halt an intense/extreme episode, and define success as 70-75% improvement w/in 3 months. But that future episodes are always possible, or possible until late teens-twenties, with a diminishing sensitivity as the person ages.

 

If I didn't misunderstand Dr K. at IOCDF, he also uses 70-75% as a definition of "success" but I think he differs in that he feels - or at least once felt - that one IVIG was sufficient to prevent any future exacerbations (maybe with the caveat that you had to keep the immune system calm and strep-free for a long period of time (e.g. a year)). In a minority of patients, a second IVIG might be needed if a second illness toppled the apple cart. But I haven't heard if his thinking has changed since then.

 

I think Dr B takes it a step further and feels mulitple HD IVIGs, 8 weeks apart, can re-train the immune system and alter B cells. I don't think this view is shared by others and that he's either going to be proven a successful pioneer or his patients will end up providing evidence to the contrary.

 

I do believe the "threshold" for when to do IVIG is up to the parent. Perhaps the Yale study, if they can show that early intervention with IVIG yields success, may change that. But right now, I think the threshold is more financial/insurance based, combined with a parent's comfort level for the risks. It isn't like you have to have a certain Y-Bocs score or certain blood test results.

 

I can't really speak to your last question, as I share your confusion. I could get it of only one were required - ala Kawasaki's Disease - or if it were considered chronic and you'd need it all the time - ala CVID. But I don't understand immunology enough to grasp how you can turn off B cells. As for the BBB - if you can keep it closed, then the autoimmune issue goes away, even if the body is still making auto-antibodies. It's the breach of the BBB that lets the horse out of the barn.

 

But again, just my understanding from various conference presentations. Don't want to sound like I have any insight to anyone's treatment philosophy.