pcd Posted April 19, 2011 Report Share Posted April 19, 2011 Hi, Dr. T. in New Jersey says my boys may have selective streptococcal immunodeficiency based on the bloodwork panel he did on them. Is this a cut&dry diagnosis or is this an diagnostic impression based on the histories/info I gave him coupled with hypotheses related to the bloodwork results? Do all kids with PANDAS have this? What does it mean exactly? Thanks. Pat Link to comment Share on other sites More sharing options...
thereishope Posted April 19, 2011 Report Share Posted April 19, 2011 I haven't heard "selective streptococcal immunodeficiency" before. But I will be curious of other responses. If anyone has been told their child has this, I'd be interested in which doctors gave the dx. Link to comment Share on other sites More sharing options...
JAG10 Posted April 19, 2011 Report Share Posted April 19, 2011 Is it related to failing titers to those 14 serotypes of strep pneumonae? Do you know what test results was he referring to? Lots of our kids have failed responses on that test; many failed 10/14, 12/14, 13/14 some even every single one. Link to comment Share on other sites More sharing options...
Bill Posted April 19, 2011 Report Share Posted April 19, 2011 Is it related to failing titers to those 14 serotypes of strep pneumonae? Do you know what test results was he referring to? Lots of our kids have failed responses on that test; many failed 10/14, 12/14, 13/14 some even every single one. Curious about this as well since my son 'failed' most of these. Having said that, what is a fail? We never got a follow-up with Dr. B to review the results so I did research on my own. There does not appear to be a consensus on what a failure is as it varies person to person based on age and general exposure history. TIA - bill Link to comment Share on other sites More sharing options...
pcd Posted April 20, 2011 Author Report Share Posted April 20, 2011 If anyone wants to see the script he gave me, email me directly and I can send it to you. I it is titers, Ferritan, Lyme, I don't know all of this stuff...Pat Link to comment Share on other sites More sharing options...
JAG10 Posted April 20, 2011 Report Share Posted April 20, 2011 I was just talking about Ferritin with another mom tonight. Surprise, surprise...the symptom list is very similar to our favorites: lyme and pandas. It is for iron. I heard a tv doc reporting tonight that people on a gluten free diet tend to run low iron which can result in many behavioral/neuropsych disturbances; ADHD, memory, concentration.....the list goes on and on. Do you have a copy of the lab results or just the script ordering the labs? You can ask him to email you the lab results as well and he will do this. Link to comment Share on other sites More sharing options...
mama2alex Posted April 20, 2011 Report Share Posted April 20, 2011 I've never heard of Selective Streptococcal Immunodeficiency and didn't find it when I did a google search. Maybe you can ask Dr. T if he can provide more into on it - perhaps a website that talks about it, so you can learn more. Also, what tests did he use to determine that your sons may have this? I know he's a neurologist - is he sending you to consult with an immunologist about this? Link to comment Share on other sites More sharing options...
ShaesMom Posted April 21, 2011 Report Share Posted April 21, 2011 I'm guessing he might actually be referring to Selective Antibody Deficiency with your son failing the streptococcal titers (Prevnar vaccine). If I'm correct it means your son did not mount a response to some of the 14 different titers of strep. There is a lot of disagreement among Immunologists as to whether or not this qualifies as an Immune Deficiency Disease. Standard protocol is to revacinate with PneumoVax (depending on the child's age) and then retesting the titers to see if a response is mounted. Keep in mind that the vaccine is loaded with strep although supposedly not Strep A. You can find a couple of paragraphs on it here at the end of the chapter: http://www.primaryimmune.org/publications/book_pats/e_ch10.pdf The Prevnar website used to have a cute little explanation a couple of years ago: http://prevnar.org/pneumo/pneumo_iq.aspx I would get a copy of the test results. Link to comment Share on other sites More sharing options...
kengela Posted May 1, 2011 Report Share Posted May 1, 2011 (edited) Dr.T. said my dd6 has "what he calls"serongative pandas"-based on her low response to the Prevnar vac. She has had very low titers for strep- her highest #of several tests was 11. Im not really sure of what this all means,you should get copies of all the labs he ordered.Although when I looked at ours I just became more confused-because at the bottom of a chart regarding her response to the prevnar vac.there are lines for good,fair,and poor.DD has 3 good,4 fair,and 0 poor. So Im not sure how he came to his conclusion of her being immunodefient.Also at the bottom of the results from Quest it says that "response to pneumococcal vaccination is best accomplished by comparing pre- and post-vaccination antibody levels.A 2 to 4 fold increase in type-specific antibodies measured 4-6weeks after vaccination is expected in immunocompetent adults." It also says "a consensus panel has suggested that individuals older than 5 years should respond to at least 70% of peumococcal serotypes" Her last Prevnar shot was in 05 so Im not sure how this test is still useful in such cases,does anyone else know? I guess I need to do another phone consult with Dr.T. he doesnt seem to answer ?s via Email. He ordered 10 days of Azithro. for a "possible deep step infection" we did that with no change at all,he then said he thought a steroid burst should be tried next,but since Ive been unable to get answers from him regarding the steroid burst we havent done it yet. Did he order any "treatment" for your sons? Keep us posted,and good luck. Angela Edited May 1, 2011 by kengela Link to comment Share on other sites More sharing options...
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