He has PANDAS but can't do IVIG! LOW IGA

[Santi]

I cant get this link to work.. Dr K got back to me this morning. he is ordering a test. Why would something like this be overlooked after he set up our appt???

Isnt this kind of rare??

 

 

Just ran across this...

 

http://www.ncbi.nlm.nih.gov/pmc/articles/P...13/?tool=pubmed

 

"In case of associated IgG subclass deficiency and/or specific antibody deficiency, immunoglobulin treatment via venous or subcutaneous route with a product that contains minimal IgA may be given. Standard treatment approach is entertained in case of an associated allergic disorder or autoimmune condition."

 

That's a good question. Why would this be overlooked? He told me to repeat the IGA in about 2 weeks. Andrea

[sf_mom]

Make an appointment with Dr. Steve Harris in Redwood City. He is a leading Lyme specialist in our area BUT could work to discover if your son has co-infections and go at them aggressively with antibiotics. They use multiple antibiotics, deal with underlying immune/gut issues to resolve underlying infection. I can't remember if your son tested positive for mycoplasma... but his practice is very, very versed at treating.

 

-Wendy

[Ellen]

Andrea, My son also has low IGA, and he was able to get IVIG done in a way that was safe. I just got your e-mail this morning and will write back soon with my phone number in case you want to call. Two years ago, my son's PANDAS was severe (multiple hospitalizations) and one of his psychiatrists, who was a PANDAS believer, was ready to go ahead and do IVIG in the hospital where he was staying until we found out that his IGA number was low. We were told that the risk of severe allergic reaction for people with low IGA was very high, and my son's doctors directed us to plasmapheresis at that point. My son had plasmapheresis twice (once at CHOP and once at Georgetown) with partial success. Last summer Dr. Latimer encouraged us to see an immunologist to test to see if there was a Selective IGA deficiency and to see if it would be possible to get IVIG done in a safe way. We went to see Dr. Bouboulisis, who told us that the total IGA number (which in my son's case was 32) could be fractionated into two numbers and he ordered a blood test to find out those numbers. If one of those numbers was zero or close to it, that would mean he had a Selective IGA deficiency. But according to Dr. B, IVIG could be safely done for kids with a Selective IGA deficiency by using a type of solution that was very low in IGA. It turned out that when the total number was fractionated, my son's IGA2 was 9 and that was low enough to be considered a Selective IGA deficiency. But he explained that we could do it safely with the low IGA solution, which he considered to be just as effective as the other kind. My son had IVIG in February (1.5 gm per kilo over two days) and then again at the same dose in April with the low IGA solution, which was called gammagard 5 percent. He is dong well ( many great improvements, especially with homework and reading) but not yet symptom free.

 

He considers himself to be "almost better" and he writes about his IVIG experiences (including low allergy IVIG) in the "forums section" of his PANDAS website for kids (www.pandas-syndrome.webs.com). Your son's IGA is lower than my son's, and so I think it would be a very good idea to consult with Dr. B. to see if this could be done for him as well. Because he is an allergist/immunologist he has expertise on this subject. We have done many treatments for my son's PANDAS that have been partially helpful, but nothing has worked as well and led to as many improvements as IVIG. So I feel very fortunate to have found someone who could confidently tell me that there was a safe way to do it.

 

Ellen

 

I cant get this link to work.. Dr K got back to me this morning. he is ordering a test. Why would something like this be overlooked after he set up our appt???

Isnt this kind of rare??

 

 

Just ran across this...

 

http://www.ncbi.nlm.nih.gov/pmc/articles/P...13/?tool=pubmed

 

"In case of associated IgG subclass deficiency and/or specific antibody deficiency, immunoglobulin treatment via venous or subcutaneous route with a product that contains minimal IgA may be given. Standard treatment approach is entertained in case of an associated allergic disorder or autoimmune condition."

 

That's a good question. Why would this be overlooked? He told me to repeat the IGA in about 2 weeks. Andrea

[Johnsmom]

Ellen - thank you so much for posting this. Dr K just called in the order to our lab so I am taking my son in after school. You have given me much relief. Now maybe I wont be so crabby.

 

Andrea, My son also has low IGA, and he was able to get IVIG done in a way that was safe. I just got your e-mail this morning and will write back soon with my phone number in case you want to call. Two years ago, my son's PANDAS was severe (multiple hospitalizations) and one of his psychiatrists, who was a PANDAS believer, was ready to go ahead and do IVIG in the hospital where he was staying until we found out that his IGA number was low. We were told that the risk of severe allergic reaction for people with low IGA was very high, and my son's doctors directed us to plasmapheresis at that point. My son had plasmapheresis twice (once at CHOP and once at Georgetown) with partial success. Last summer Dr. Latimer encouraged us to see an immunologist to test to see if there was a Selective IGA deficiency and to see if it would be possible to get IVIG done in a safe way. We went to see Dr. Bouboulisis, who told us that the total IGA number (which in my son's case was 32) could be fractionated into two numbers and he ordered a blood test to find out those numbers. If one of those numbers was zero or close to it, that would mean he had a Selective IGA deficiency. But according to Dr. B, IVIG could be safely done for kids with a Selective IGA deficiency by using a type of solution that was very low in IGA. It turned out that when the total number was fractionated, my son's IGA2 was 9 and that was low enough to be considered a Selective IGA deficiency. But he explained that we could do it safely with the low IGA solution, which he considered to be just as effective as the other kind. My son had IVIG in February (1.5 gm per kilo over two days) and then again at the same dose in April with the low IGA solution, which was called gammagard 5 percent. He is dong well ( many great improvements, especially with homework and reading) but not yet symptom free.

 

He considers himself to be "almost better" and he writes about his IVIG experiences (including low allergy IVIG) in the "forums section" of his PANDAS website for kids (www.pandas-syndrome.webs.com). Your son's IGA is lower than my son's, and so I think it would be a very good idea to consult with Dr. B. to see if this could be done for him as well. Because he is an allergist/immunologist he has expertise on this subject. We have done many treatments for my son's PANDAS that have been partially helpful, but nothing has worked as well and led to as many improvements as IVIG. So I feel very fortunate to have found someone who could confidently tell me that there was a safe way to do it.

 

Ellen

 

I cant get this link to work.. Dr K got back to me this morning. he is ordering a test. Why would something like this be overlooked after he set up our appt???

Isnt this kind of rare??

 

 

Just ran across this...

 

http://www.ncbi.nlm.nih.gov/pmc/articles/P...13/?tool=pubmed

 

"In case of associated IgG subclass deficiency and/or specific antibody deficiency, immunoglobulin treatment via venous or subcutaneous route with a product that contains minimal IgA may be given. Standard treatment approach is entertained in case of an associated allergic disorder or autoimmune condition."

 

That's a good question. Why would this be overlooked? He told me to repeat the IGA in about 2 weeks. Andrea

[Santi]

Make an appointment with Dr. Steve Harris in Redwood City. He is a leading Lyme specialist in our area BUT could work to discover if your son has co-infections and go at them aggressively with antibiotics. They use multiple antibiotics, deal with underlying immune/gut issues to resolve underlying infection. I can't remember if your son tested positive for mycoplasma... but his practice is very, very versed at treating.

 

-Wendy

 

Thanks for the lead, sounds good. My son did test positive for MP but negative for Lyme. Andrea