IVIG for subclass deficiency

[tantrums]

My DS is just NOT doing well. I do think it is partly adjusting to the gluten free diet. Or at least I am HOPING that is what it is.

 

His recent bloodwork showed a subclass defiency. So it looks like it's quite possibly IVIG would be covered by insurance. It honestly isn't something I had considered bc he WAS seeming to respond to ABX. However he is just doing so badly lately that I'm seriously starting to consider this. I am waiting for a call from our immunologist to see if she would recommend and/or can do it herself. I'd never even discussed it with her so I have no idea.

 

I was under the impression that IVIG was given two or three times and then you were done. HOwever, I'm reading a lot of posts lately that seem to read like it would be a never ending procedure should we start. Is that so? Or do they ever just respond within a couple of times so that it isn't needed anymore?

 

Also - is the steroid burst necessary to attempt prior to IVIG? I understand it's a good indicator of how IVIG would possibly work, but my DS had to use steroids for chronic croup most of his life. This was pre-pandas and when he needed to use orapred, we called him "steroidboy" it was NOT pleasant!! Actually looking back now, I'd say that gave us a small preview of what was to come with pandas. Steroid burst really scares me!

[Phasmid]

What is the subclass deficiency in? My boy has low IgA subclass 1, but I was told that it wasn't a big deal, as there is a great amount of overlap by other subclass antibodies when one is low.

[tantrums]

Shoot! I'm at work and seem to only have two pages of the bloodwork with me. So I don't have the very specific page.

 

But it is IgG2 and IgG4 that is the main problem. I believe the IgE was also an issue, but don't have the sheet now with the ranges.

[Kayanne]

has he ever had prednisone without having croup? is it possible that the "steroid boy" you were seeing was more PANDAS behaviors caused by the virus?--upper respiratory infections can bring out PANDAS behaviors. or perhaps it was mycoplasma?, and I would think giving the pred without addressing an underlying infection is not going to do much.

 

Typically, prednisone has an opposite effect on a PANDAS child--calming them down. For my daughter, there was some raging and screaming for the first week at the high dose, but we could still see improvements--it was at the step down that the "ragey" behavior subsided....by the end of the month the improvements were incredible and LASTING.

Edited July 9, 2010 by Kayanne

[tantrums]

No - he never had the orapred without croup. The croup was very much "prepandas". He had it from 6 months on until 6 years of age. Once he past 5 or so, it started to taper off to a little less. When he was 3 and 4, he had it 7 or 8 (or more!) times a year! Would use the nebulizer, but eventually would always get to the point of needing the oral steroid, which would kick it out. Seems like the deficiency is the reason for this.

 

Then he got H1N1 and actually got through that with no croup! I was sure he'd kicked it. Finally outgrew it Then it was about 2 weeks after H1N1 that the pandas symptoms showed up.

 

So maybe then, he just may not have that reaction to the orapred now? That would be nice. So it may be worth considering.