low dose, monthly IVIG

[Hayley]

So a little background first...

 

1) my DD7 has been on Augmentin 2x daily for just over a month (9/12 when we saw Dr. L for the first time). About two days after starting the abx at the level she is now on (she was previously on a very low does of augmenin and azithromycin), we saw signficant improvements. Week before last, she was, I would say, probably 85% back to herself. Weekend before last, she started regressing. DS4 (not pandas) had an awful cough/virus type thing and we are assuming it was the exposure to this though DD isn't actually sick with what he has.

 

2) Also, Dr. L had called for bloodwork mid-Sept which showed VERY low IGG/IGA. She initially wanted to do IVIG based on CVID but we questioned this just becuase CVID would generally be indicated by her getting sick all the time which she simply is not (never missed a day of school all last year). Both Dr. L adn Dr. T (who we'd consulted with via phone) said let's not treat the numbers, wait and see since she's doing well on the abx and we'll retest IGG/IGA in Dec.

 

now...

 

When DD began regressing last week, we went in to see Dr. L who felt that her current flare indicated she really does need IVIG. Wants to do low dose monthly through the school year. We're digesting all this, but overall feeling like we trust Dr. L who seems to think that this will make a big difference for Layla.

 

Today, we happened to have DD's well visit with our ped who is generally supportive, but clearly doesn't totally get it. She is questioning the need for IVIG and asked if Dr. L "could send her some research/documentation addressing why IVIG should be used." I told her she should reach out to Dr. L if she'd like (she actually says she plans to email dr. swedo who she evidently knows via a friend/colleague...we'll see!), but frankly, I do not feel terribly inclined to bother Dr. L with educating my pediatrician. However, I am compelled to send her what I can get my hands on as I do generally like her and think she and I will both benefit from her understanding this all a bit more. Her words to me were "It's not that I'm questining it, I just don't understand it." Which I do think is pretty accurate. I also think she's being influenced by a bad experience she told me about with a hashimotos patient who was getting IVIG that she worked with during her residency (apples and oranges?).

 

I'm googling for research of course, but finding mostly info on higher dose IVIG for PANDAS. Does anyone have any info on research done around lower-dose/monthly treatments?

 

Thanks in advance!

Hayley

[peglem]

Your daughter may not seem sick because her IgG/IgA is low- so you're not seeing symptoms. When we "see" somebody being ill, what we are seeing is the immune system fighting the infection...runny nose, fever, etc. But if the immunoglobulin is low, you may not get those indications that an infection is being addressed by the immune system. So, what you may see instead is an autoimmune reaction. That's what we get.

Our experience w/ IVIG is high dose every 3 weeks, so I don't know what you'd see w/ the lower dose.

 

Also, our experience w/ Dr.L is that she is very responsive to her patient's other doctors. We only saw her once, but before seeing her, both our pediatrician and a rheumatologist had very lengthy conversations with her. And after we saw her the pediatrician consulted her a few times. Just see if the pediatrician will call her.

[bigmighty]

Very curious to hear more about the recommendation for low dose IVIG. My son has low IgG and a local immunologist (not much PANDAS experience) recommended low dose monthly IVIG. Dr. B. as well as parents on this forum cautioned against low dose and suggested that it would cause a PANDAS exacerbation. I know it is standard treatment for some CVIDs to do the low dose, but we have been told that this is not an option for PANDAS kids. Dr. L is certainly experienced with PANDAS, though.

[melanie]

My son does medium dose 1g per kilo every 21 days for 3 years. Been a long road but he's much better. He was always sick as a small child. He's 18 and still gets some ilness even with ivig.

[Hayley]

Thanks all,

 

Peglem, yes, that's what Dr. L (and previously Dr. T) explained to me re: the behavior being the presentation of illness. I get it, just think my ped is still skeptical. Does your DD have low IGG/IGA?

 

I'm wondering after reading these posts if maybe I'm incorrec that Dr. L is recommending low dose; that maybe its a medium dose, but she's just describing it as "not a lot" which I think is the phrase she used. She would get it in a single day over 3-4 hours I believe. I am going to check with Dr. L's office to see what the exact dosage is.

[peglem]

Thanks all,

 

Peglem, yes, that's what Dr. L (and previously Dr. T) explained to me re: the behavior being the presentation of illness. I get it, just think my ped is still skeptical. Does your DD have low IGG/IGA?

 

I'm wondering after reading these posts if maybe I'm incorrec that Dr. L is recommending low dose; that maybe its a medium dose, but she's just describing it as "not a lot" which I think is the phrase she used. She would get it in a single day over 3-4 hours I believe. I am going to check with Dr. L's office to see what the exact dosage is.

Yes, she has low IgG and low IgA. Our 1st 2 IVIGs were low dose, 4 weeks apart...and our experience was that it made Allie worse. My theory is that it was just enough IgG to create an immune response to whatever chronic infections were lurking and that immune response created more inflammation than she already had. Things got better when we switched up to the higher dose. That's our experience, but I sure would trust Dr.L's judgement as she's seen a lot of cases.

[Fixit]

Any more info on this topic?

i am hearing about low dose also.

I have also heard of another plan that would be HD first, followed by low dose about 3-4 weeks later...and maybe a few more low doses to follow.

ANyone do any of these other types of protocals being followed?

Haylay, did you do the ld as Dr L suggested and how is it going?

[Hayley]

FixIt, we ended up doing the HD in early December (so we're about 3.75 months out). She's doing great. Most of the time, she's 100% her old self with the exception of about a handful of days since early January where she'll have a couple of hours where she is "off" (generally either overwhelmed by anxiety or gets agitated from something and gets super defiant/angry - nothing like the rage we used to see pre-treatment, but not really her norm). It's literally a couple of hours and with the exception of one week when it happened twice in the same week, these episodes seem to be about two weeks apart and relate to times when she is super tired and/or there's lots of illness going around. The possibility of repeating IVIG, either with one more HD or, if her immunoglobulin doesn't hold (it's dropping, but according to our immunologist, not as much as he expected), maybe lower dose more regularly, is still on the table, but for now we're just watching and waiting.