Immune Deficiency

[CandKRich]

Hi-

Both of my boys (ages 11 & 12) have immune deficiencies. I am just wondering if it is possible to actually overcome the immune deficiency - - or is it a situation where the only way to elevate the igg levels is to have regularly schedule IVIG? I was thinking that if the immune system is chronically compromised, then that is a huge problem!! Can these kids ever really recover? For example, my younger son's quantitative igg is in the lower 500's and I'm just wondering if it will ever increase (outside of the boost from IVIG)? Not sure if I'm making sense...

Thanks,
Karen

Edited August 12, 2013 by CandKRich

[matis_mom]

Hi-

 

Both of my boys (ages 11 & 12) have PANDAS and immune deficiencies. I am just wondering if it is possible to actually overcome the immune deficiency - - or is it a situation where the only way to elevate the igg levels is to have regularly schedule IVIG? I was thinking that if the immune system is chronically compromised, then that is a huge problem!! Can these kids ever really recover? For example, my younger son's quantitative igg is in the lower 500's and I'm just wondering if it will ever increase (outside of the boost from IVIG)? Not sure if I'm making sense...

 

Thanks,

Karen

That's a good question... My son has just low IgM... still waiting to get an appointment with a pediatric immunologist. We are headed for plasmapheresis, which I know will help, but more and more I'm thinking IVIG will be needed at some point. From what I've read with low IgM, you pretty much are open to any infection. No wonder we cannot take him off of the Augmentin!

But, I've been searching and searching, and run into many reports of people with different autoimmune diseases get well by following the Specific Carbohydrate Diet. It is not easy, not at all. It's even harder than just gluten free. But I am willing to give it a try. I figure all 8 of my kids have the same genetic predisposition as my PANDAS ds, I need to do something to help them out too. And my dh also has psoriasis and thyroid problems, so I think we will all benefit from it.

But going back to your question, the point is: why is it that they have immune defficiencies??? Naturopaths will say it could be heavy metals, allergies, underlying lyme disease, etc.

So I guess the diet could address at least the allergies.

DS was doing so well until we got strep again, I almost thought we were out of trouble, but now I realize it's not over yet!

Sorry, I'm not making sense either, am I? But I understood what you meant. Can this kids get over this on their own?

[momto2pandas]

They can outgrow it, but that doesn't always happen. Our kids had some special memory B cell test done at UCLA that's apparently a pretty good predictor of whether they'll outgrow the need for IVIG or whether they're likely to be on it long-term. Haven't gotten the results yet, but our immunologist said that even though their immune deficiencies look pretty bad (esp ds4), it is possible that they'll outgrow the need for IVIG within as little as a year.

[philamom]

They can outgrow it, but that doesn't always happen. Our kids had some special memory B cell test done at UCLA that's apparently a pretty good predictor of whether they'll outgrow the need for IVIG or whether they're likely to be on it long-term. Haven't gotten the results yet, but our immunologist said that even though their immune deficiencies look pretty bad (esp ds4), it is possible that they'll outgrow the need for IVIG within as little as a year.

Is this a blood test? Can any Immuniologist run this? Thanks!

[momto2pandas]

Yes, it is a blood test, but I don't know if it's a commercially available one or if it's a specialty test they do here. UCLA does do some specialty lab tests that one can't get through commercial labs, but I don't know if this is one of them. I can ask next time I see the immunologist.

[philamom]

Yes, it is a blood test, but I don't know if it's a commercially available one or if it's a specialty test they do here. UCLA does do some specialty lab tests that one can't get through commercial labs, but I don't know if this is one of them. I can ask next time I see the immunologist.

Thank you...that would be great. You are no longer seeing Dr. B, correct?

[CandKRich]

Thanks for the replies!! momto2pandas - - I would also like to know about the blood test!

 

Thanks again1

Karen

[momto2pandas]

We are still following the protocol Dr. B set out, but don't see him any more - 3000 miles away!