8 weeks post ivig -update

[dcmom]

My two cents on pex vs ivig, fwiw:

 

I believe for most of our kids, ivig and pex are not a "cure", rather a tool to bring them to "remission". I don't really think anyone knows which works "better", as that would take a really large, detailed study (considering the differences in presentation, severity,duration, etc of illness). I know that Dr K seems to prefer IVIG- but, frankly, I don't think he has done/ or probably has the ability to do/prescribe PEX- so that would certainly seem to be a factor there.

 

My only contribution here, is that for many/most, pex has an immediate/almost immediate effect, vs the possibility of worsening (or turning back the pages) for 6 weeks before improvement starts. Considering my thought that these procedures are not a cure, and that the child has most likely been suffering for quite some time by the time treatment is secured, I think the kindest treatment is pex. I (as everyone) HATE to see our kids suffer a minute more than absolutely necessary .

 

Of course if the child has a documented immune deficiency (probably beyond failed pneumococcal titers) then IVIG may be warranted- but why can't that be done post pex.

 

This is why I am so frustrated that no one (besides Dr L) does pex for these kids. I am frustrated there is/was going to be an ivig study. When my dd had pex, she was in crisis. We absolutely did not have 6 weeks to wait (or get worse)- as I am sure is the situation for most. Ugh!

[Kayanne]

Also, in Swedo's study "80% of the replacement fluid was 5% albumin" (remainder saline). and the process was done over 10-12 days...this is not the same as the PEX our kids are getting. I don't think(please someone let me know if this is correct or not - I have read that plasmapherisis and plasma exchange are different, and that what our kids would get today is plasmapherisis, not plasma exchange, and therefore todays "PEX"(which now seems to be interchangable for either pherisis or exchange), is actually not putting albumin back in. So, it is different. Swedo used donor blood product, (albumin) like ivig. It would be more like getting today's PEX and getting ivig the next day.( I think? Does anyone know?)

I don't know a whole lot about it. But what I do know is that in Dr. L's interview with Autism One, she was asked if plasmapheresis followed by IVIG would be the ideal treatment. Her response was that she didn't know because it hasn't been studied. From that, my assumption is that the studies done by Swedo using plasmapheresis didn't include donor antibodies---but that was just my assumption...perhaps someone can clarify that.

 

Here is a link to the interview:

 

http://www.voiceamerica.com/voiceamerica/vepisode.aspx?aid=44414

[norcalmom]

here is an old thread on ivig vs pex. I started it about 6 mos ago when trying to figure out what was better. I was going to pursue PEX...but as you read toward the end of the thread, there seems to be belief that ivig may have more of a regulating effect on the immune system...and also seems that vast majority of doc do ivig, but not PEX...so although PEX might be more immediate - it wouldn't be for us because it would probably take far longer to get an appointment with the one doctor I knew that did it for pandas.

 

Also, I think that we should stop saying that PEX is better for tics. I think when people read that they think if they have a ticcer ivig won't work for them, AND more importantly, that IVIG is better for OCD - which I have not seen anything that says this (and someone saying that DR K said this from above post). in the study comparing pex to ivig - in the summary they specifically call out how much more effective the PEX was for OCD.

 

In the study, and antecdotally on the board, it seems that PEX is better FOR BOTH. This makes more sense than picking one symptom to me. What about..bedwetting, what about nightmares...what about sep. anxiety...why not separate into groups along those lines? To me that doesn't make sense.

 

However, the study stops after one year, so we can't see what kind of relapse rate is involved, or what further healing happens after a year.

 

Here is the link to the thread called ivig vs pex, it is an excellent summary, and a number of people that contributed have done both:

http://www.latitudes.org/forums/index.php?showtopic=8699&st=0&p=72100&fromsearch=1entry72100

[Fixit]

here is an old thread on ivig vs pex. I started it about 6 mos ago when trying to figure out what was better. I was going to pursue PEX...but as you read toward the end of the thread, there seems to be belief that ivig may have more of a regulating effect on the immune system...and also seems that vast majority of doc do ivig, but not PEX...so although PEX might be more immediate - it wouldn't be for us because it would probably take far longer to get an appointment with the one doctor I knew that did it for pandas.

 

Also, I think that we should stop saying that PEX is better for tics. I think when people read that they think if they have a ticcer ivig won't work for them, AND more importantly, that IVIG is better for OCD - which I have not seen anything that says this (and someone saying that DR K said this from above post). in the study comparing pex to ivig - in the summary they specifically call out how much more effective the PEX was for OCD.

 

In the study, and antecdotally on the board, it seems that PEX is better FOR BOTH. This makes more sense than picking one symptom to me. What about..bedwetting, what about nightmares...what about sep. anxiety...why not separate into groups along those lines? To me that doesn't make sense.

 

However, the study stops after one year, so we can't see what kind of relapse rate is involved, or what further healing happens after a year.

 

Here is the link to the thread called ivig vs pex, it is an excellent summary, and a number of people that contributed have done both:

http://www.latitudes.org/forums/index.php?showtopic=8699&st=0&p=72100&fromsearch=1entry72100

 

I've read most of the thread over time..some may not remember every detail...but...

part of me agrees...and the other...

well tics seem to be the hardest to get to remit..per every doc i've talked to...And maybe that may be more true if your only symptom is tics..ie if you have rages, tics, ocd..tics may be an equal opportunity condition...

if you have ocd...it is more treatable, remits, better, faster

if you have tics...you need more ivig, time, probably pex and ivig...(it might have to do with the particular pathway being attacked..or the individuals susseptibility) so in that regard ..

if pex worked equally on both...but ivig was better for ocd...it would then be that pex is better for tics

 

if that makes sense..and that is not a scientific study...its kinda a summerary of me following the ticcers as a priority....

[P_Mom]

For my son, who had the whole deal..tics, ocd, hallucinations, anxiety, etc....the tics were the first to go...stopped as fast as they started. The ocd and anxiety lingered for a long time......the past few months have been great! (by no means to I think we are out of the woods...but, for now, in a good place)