Subcutaneous IVIG

[bigmighty]

Our local immunologist spoke with us this week and asked whether anyone had been trying subcutaneous IVIG for PANDAS patients. DS may have an ongoing CVID and, if yes, might require ongoing IVIG treatments for the sake of his immune system. If yes, a weekly self-administered 2 1/2 hour subcutaneous IVIG would be an option (the other alternative is two full days of IVIG every 8 weeks). DS's symptoms are in remission right now, so not treating with IVIG for PANDAS. But it got me wondering - is anyone out there trying this option for PANDAS? Obviously, it might not be an option for younger children or kids with significant symptoms. But it is an interesting idea...

[PowPow]

my local allergy/immuno asked me the same thing in passing conversation- he was see a non-pandas kid of mine for allergies.

he does not know alot about PANDAS but seemed open minded

he was surprised, I think, at the medical intervention level we have done (ivig, steroids, pex)

he said he does subQ weekly for immune deficiency- better than big guns once a month.

I wonder if he would be willing to try it if a child of mine needs it again.

[minimaxwell]

Not a good idea for PANDAS kids, I asked one of the PANDAS experts. Sorry ,I can't remember the reason,perhaps someone else can weigh in on the "why" My brain can only hold so much info these days Once I heard it was not an option I let it go..

[bigmighty]

Not a good idea for PANDAS kids, I asked one of the PANDAS experts. Sorry ,I can't remember the reason,perhaps someone else can weigh in on the "why" My brain can only hold so much info these days Once I heard it was not an option I let it go..

 

Hmmmm.... If DS is not having PANDAS symptoms and is only getting SCig for the CVID, I wonder if it would cause problems. Can't find anything in the literature.

[DeterminedMomVA]

I'm speculating here, which is always dangerous, but wouldn't the concern be related to the fact that it would be low-dose? My understanding is that lower dose IG is not anti-inflammatory in the brain and can actually increase brain inflammation, which is why high-dose, rather than low-dose IVIG is done for PANDAS.

[PowPow]

There has been some research pointing to what DeterminedMomVA wrote.

I would consider it- since my child had a serious hematological problem develop from high dose IVIG. She recovered- but I would be very hesitant to do it again in such high dose.

She has never had her immune function checked, however.

[bulldog24]

It doesnt make much logical sense to me. I dont really know about the procedure, but my thinking is there is not a lot of subcutaneous space in humans. How would they any volume of liquid under the skin? I have heard of a lyme patient getting IM immune globulins before.

[PowPow]

it is not diluted in bags, it is a little needle like insulin.

 

 

 

edited for needle vs shot (to clarify) sorry.....

Edited June 16, 2012 by PowPow

[bulldog24]

hmmm....I thought the post said a 2 1/2 hour administration...

 

Iguess I know nothing about it so I should just be quiet! lol

[PowPow]

there can be subQ infusions, but this, at least what i think our allergist was referring to (for these pts) was injection. they do place a small catheter under the skin and very small amount is infused (compared to IV)

subq infusions are used for other stuff, too.

I guess I should have asked the immuno to clarify!

It is/ was also given IM

[bigmighty]

hmmm....I thought the post said a 2 1/2 hour administration...

 

Iguess I know nothing about it so I should just be quiet! lol

 

If you google search it on youtube, there are videos showing the whole process. I have not watched them yet. It's my understanding that you have a large syringe that looks like it would hold slightly more than 1/2 cup. I believe you push the plunger in by a very small specified amount every 15 minutes and just keep doing that until it is all used up.