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tracy

Test results / scared

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Hi

My son has been diagnosed with PANDAs for 5 years now. He is doing pretty well at this point although still has flare ups from time to time. We now go to the new PANDAs Center at Mass General Hospital - and finally feel as though we have some real support! We got a phone call tonight at home regarding the blood work we recently had done. The labs indicated that our son had an extremely low Immunoglobulin A count - which makes him more susceptible to infections and viruses and not a candidate for IGIV treatments. The normal range is between 65 and 300 (65 being the lowest) and our sons was at 35. Even more alarming – he also had an increased Anti Nuclear A tider - which can be an indicator of other auto-immune disorders (such as lupus). Our doctor mentioned that he has seen this before in kids with PANDAs and it may not be an indicator of anything more serious and to hold off worrying until we go to the immunologist apt. scheduled in 5 weeks. We are pretty scared and the thought of waiting 5 weeks is somewhat overwhelming. Has anyone else run into these two lab results before?

 

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My son's IGA is 47. However, the doctors tell me that he is not deficient. Our son is getting ready to have IVIG treatment this weekend. For IVIG treatment to be sucessful, you will need to watch the brand of medication that is given. Some have less IGA than others. Our cardiologist gives this to heart transplant patients and he has already taken this into consideration. He is incharge of my son's treatment because his medical condition is affecting his heart and blood pressure.

 

I do not know anything about the other test but wanted to tell you not to be scared. Your son's body is making IGA which is good. My understanding is this IGA testing can also be affected by any current virus or infectiions that may be present in the body. So when your son is feeling his best and body is not over loaded, his body could be producing more IGA. Doctors and immunologist have told me that as long as the child is not IGA deficient, then IVIG treatment is not out of the picture. Just make sure you have a doctor that knows the ins and outs of this treatment.

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My daughter's positive ANA was one step that led her to the right treatment. My daughter's was positive with a speckled pattern.

Try not to be scared. Look at this from a treasure hunt point of view-each finding is a step to get your child to proper diagnosis and healing!

It is good to find all this out.

I believe there is a low IgA appropriate ivig.

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All of children have immune deficiencies inclusive of IgAs. Their IgA numbers are the following: DS - 10 years old - IgA: 38, DS - 6 years old - IgA: 40, DD - 6 years old - IgA: 21. DD's subclass are also very low in every subclass. We have tracked our children's subclasses since older DS's on-set of PANS at 5 years of age. Our twins subclasses were slightly low at age 3 but not nearly as bad as they are today. Older DS's subclasses were normal in 2009 and he is now also deficient across the board. Our children are not fully biologically related to each other but were all carried by me in-utero.

 

We believe biotoxin illness/mold at our old house along with the gestational Lyme/co-infections has really worked on their immune system. Mold can tragically suppress the immune response an low IgGs/IgAs is a byproduct. It is our DD's neurologist perspective that the mold was the environmental trigger that cause all three children to develop low IgAs over time. Those with Lyme typically have deficiencies in their 1's and 3's subclasses. You can test for mold via Real Time Labs Mycotoxin Urine Test.

 

Good article on mold.

 

http://articles.mercola.com/sites/articles/archive/2011/09/03/molds-making-you-ill.aspx

 

Our DD does receive a low IgA monthly IVIG product of Octagam and definitely helps while we continue to treat Lyme and detox mold. Older DS is almost fully recovered and has made progress toward recovery without regular IVIG treatments. He did have 3 hd IVIGs September 2009, November 2009 and January 2010 shortly after on-set when we thought solely PANDAS.

Edited by sf_mom

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Our kiddo is low in IgA and IgG. Her immuno is not concerned with the IgA being low and stated insurance would not cover IVIG for low IgA. However, since her IgG is low he says insurance will most likely cover IVIG.

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We see all the docs at MGH and they are beyond fabulous!! We had the work up with the immunologist and she did a brilliant job. My child had a positive ANA (speckled). This is a non specific finding and is nothing to worry about. The NIH noted to me that up to half of all of their pandas cases are testing positive to the ANA but it is not something to worry about. You will most likely have to repeat the bloodwork when you go back to see the immunologist. Try not to worry, especially if your child seems to remain healthy most of the time. My child has low white blood cells and neutrophils which should also make him susceptible to illness yet he is almost never sick. You are in great hands!

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