Jump to content
ACN Latitudes Forums

Anyone going to the PANDAS conference this weekend in DC?


Recommended Posts

  • 3 weeks later...

What did you think? About the different IVIG protocols

 

 

I did not attend, but I would love to hear about the different IVIg protocols discussed - protocol very important to us right now as I want to do a different protocol from what we're doing. If there is reasoning behind the different approaches, that would be super, super helpful to know.

Link to post
Share on other sites
  • 3 weeks later...

Wisdom_seeker - is there anything noteworthy you can share on IVIG Protocols? This is super timely for us, too. Dr is trying to set up HDIVIG, but spread over 4 days instead of 2. I'm a little worried, since I don't know what the precedent is for this, and I'm also worried the body might see it as a low dose IVIG, which I understand can cause problems. I'd be grateful for anything you can share. Thank you!

Link to post
Share on other sites
  • 2 weeks later...

Hello everyone,

 

 

it's been a while since I posted but I was following regularly. This topic is very interesting so I would appreciate if someone who attended the conference could reply. I’m asking because my son finally got IVIG this August and his PANDAS doctor spreaded it through 4 days instead of 2.. We could not fight this decision because the doctor is the one who is running the things and it was this or no IVIg at all so we finally agreed. 4 mnts after the IVIG my son’s symptoms are back with the first bacterial infection just like he never received IVIG and we had a huge expectations from the IVIG. He is now on Augmentin full dose and the situation is improving but very very slowly... This is why I would appreciate comments from the conference and your experience/opinion as well. Thanks.

Edited by Draga
Link to post
Share on other sites

I’m asking because my son finally got IVIG this August and his PANDAS doctor spreaded it through 4 days instead of 2.. We could not fight this decision because the doctor is the one who is running the things and it was this or no IVIg at all so we finally agreed. 4 mnts after the IVIG my son’s symptoms are back with the first bacterial infection just like he never received IVIG and we had a huge expectations from the IVIG. He is now on Augmentin full dose and the situation is improving but very very slowly..

 

 

I didn't go to the conference, but will throw in my two cents. From what I have read, 4 days is an older, relatively standard way of infusing high-dose (2 g/kg) IVIg in other, non-PANDAS conditions. I might guess that it is easier for side effects than a two-day infusion. If you saw good results, I'm not sure that the 4-day protocol would be related to the return of symptoms with subsequent infection.

 

FWIW, it seems to me from reading forums like this one that one-and-done IVIg for PANDAs is the exception rather than the rule. One-and-done is probably wishful thinking on the part of certain docs.

Link to post
Share on other sites

jan251 Many thanks for your input. I thought so myself unfortunately. We went through a long and difficult process for IVIg approval and indeed we hoped for a miracle. We did have one for almost 4 months. Now we are back on the beginning of the story. Here where we live doctors are still learning about Pandas so we consider ourselves lucky to have someone who is close to being Pandas specialist then not having one at all. Indeed 4 days protocol is used for example in GB syndrome healing and our doctor was emphasizing all the time that 4 days infusion is easier for side effects (not that we did not have side effects and a very severe ones just like someone who got 2 days infusion).

I guess we are now starting a new fights for another round of IVIg..

Link to post
Share on other sites
  • 1 month later...

Hi all,

Sorry I missed those of u that went-I tried! My take away on icing was as contributed above 2mg/kg administered over two days. Usually also with support media. There is a FB pandas pans ivig page with a good following--fyi

Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
×
×
  • Create New...