deby Posted June 1, 2010 Report Share Posted June 1, 2010 I am going to the allergist for the first time. What tests should I ask for him to check for PANDAS? I know I should ask Igg subclasses to test for immune deficiencies, anything else? I've tested last Friday for CBC, Mycoplasma, ASO Titers, Anti-DNase-B titers for Strep, Rapid and Culture for Strep. (Don't have the results yet) Link to comment Share on other sites More sharing options...
sf_mom Posted June 1, 2010 Report Share Posted June 1, 2010 You are definitely heading in the right direction on all of the tests!!!! You might see if they can run circulating immune complexes.... Also: Lyme test kit and see if the allergist will draw blood http://igenex.com/Website/ You might also want to consider CaM Kinase II via Madeleine Cunningham talked about on this forum. Out of pocket expense of $400.00 -Wendy I am going to the allergist for the first time.What tests should I ask for him to check for PANDAS? I know I should ask Igg subclasses to test for immune deficiencies, anything else? I've tested last Friday for CBC, Mycoplasma, ASO Titers, Anti-DNase-B titers for Strep, Rapid and Culture for Strep. (Don't have the results yet) Link to comment Share on other sites More sharing options...
deby Posted June 2, 2010 Author Report Share Posted June 2, 2010 The ASO tests came up high (139), so WBC,RBC came high. MCV,MCh came low. Lymp low and EOS high. BUN H and Crentinie low. So definitely he has some infection, something is going on. They don't have the results for the other tests. So is it enough for PANDAS that ASO is high? My pediatritian gave my son AMOX to start 1600mg. We started on Sunday. I've noticed that the motor tics are better but the vocal tics are worse. How long it takes to see some results? I'm in the search for a good PANDAS doctor, I made a couple of phone calls, now I need to decide which doctor to chose. Should the whole family start with antibiotics? Link to comment Share on other sites More sharing options...
deby Posted June 2, 2010 Author Report Share Posted June 2, 2010 You are definitely heading in the right direction on all of the tests!!!! You might see if they can run circulating immune complexes.... Also: Lyme test kit and see if the allergist will draw blood http://igenex.com/Website/ You might also want to consider CaM Kinase II via Madeleine Cunningham talked about on this forum. Out of pocket expense of $400.00 -Wendy I am going to the allergist for the first time.What tests should I ask for him to check for PANDAS? I know I should ask Igg subclasses to test for immune deficiencies, anything else? I've tested last Friday for CBC, Mycoplasma, ASO Titers, Anti-DNase-B titers for Strep, Rapid and Culture for Strep. (Don't have the results yet) What does it mean" circulating immune complexes"? There is no much Lyme problems in my area, do you know if people from Los Angeles does this test? I'm going to ask the Dr anyways. I'll look into the other tests that you mentioned. Thank you Wendy! Link to comment Share on other sites More sharing options...
EAMom Posted June 2, 2010 Report Share Posted June 2, 2010 (edited) I would get throat cultures on all family members to check for strep carriers. Are their siblings? Definitely check the siblings. (I would do this b-4 worrying about getting titers in family members or putting every on antibiotics.) re Amoxicillin: it works for some PANDAS kids, but many need something stronger (Augmentin, Azithromycin). Here's an article on Amoxcillin failure in strep throat: http://www.entrepreneur.com/tradejournals/.../169459644.html Is your son's main symptom tics? Or is there a lot of OCD/mood stuff/other? I would say, if you are trying to discern if your child is PANDAS vs. non-PANDAS tics (eg tourettes) then the CaM kinase ll (Cunningham test) would be very worthwhile. Edited June 2, 2010 by EAMom Link to comment Share on other sites More sharing options...
deby Posted June 2, 2010 Author Report Share Posted June 2, 2010 Thank you EAMom. My son's symptoms are tics. We started Amox before getting any result from the test bloods, just because we were suspicious of PANDAS. He gave us AMOX for 10days. If it doesn't help do you know if we can switch right away to Augmentin or Azitromycin? I don't have a good Doctor yet, my ped is very nice and tried to help but he doesn't know much about PANDAS. We'll see how it goes. Thanks! Link to comment Share on other sites More sharing options...
sf_mom Posted June 2, 2010 Report Share Posted June 2, 2010 Yes, you can start Azithro or Augmentin right away post Amox........ make sure you are taking a probiotic to protect his stomach while taking antibiotic. It might take a month to see better results but the fact that his motor tics have improved is a sign its probably infection based (plus positive ASO, high WBC, RBC, clinical picture etc). Please ask your Dr. for another 30 days of antibiotics until you can get to a Dr. that understands PANDAS. You can contact ILADs and request a local Lyme Dr...... Dr. Steve Harris is up here and in Malibu (he might take some time to get an appointment). In his Redwood City office it is an 8 week wait. So glad you are already seeing improvement!!! Link to comment Share on other sites More sharing options...
EAMom Posted June 2, 2010 Report Share Posted June 2, 2010 For us tics was the symptom that took the longest to go away (about 6 weeks of full strength Azith plus some advil.). Mood improved the quickest (1 week), and OCD was next (2-3 weeks). Many find tics to be the pandas symptom that takes the longest/is the most difficult to resolve. Lauren Johnson (sneezing girl) is a good example...she was on Augmentin and Azith and pred. The tics (sneezing) slowed down with that protocol (I don't remember exactly what it was, but abs were used pretty aggressively for a couple of months, with some steroids). The sneezing tics didn't stop completely until after IVIG. So, I wouldn't expect huge (or necessarily even noticeable) changes with just 10 days of Amoxcillin. Link to comment Share on other sites More sharing options...
Fixit Posted June 2, 2010 Report Share Posted June 2, 2010 For us tics was the symptom that took the longest to go away (about 6 weeks of full strength Azith plus some advil.). Mood improved the quickest (1 week), and OCD was next (2-3 weeks). Many find tics to be the pandas symptom that takes the longest/is the most difficult to resolve. Lauren Johnson (sneezing girl) is a good example...she was on Augmentin and Azith and pred. The tics (sneezing) slowed down with that protocol (I don't remember exactly what it was, but abs were used pretty aggressively for a couple of months, with some steroids). The sneezing tics didn't stop completely until after IVIG. t So, I wouldn't expect huge (or necessarily even noticeable) changes with just 10 days of Amoxcillin. Even Scott Smith, not trying to put words in his mouth...said tics are the hardest to resolve.... with that being said...if i can just spew my view, one more time... i get concerned that unless there is ocd(which usually manifests more with girls) is present and there is a predominance of tics...some may view 95% tic problem(with a little sensory or a dash of some other super minor issue)as non-pandas....IMHO as no one really know anyway..tics are just a different version of expression of the same problem...some, from what i am just picking up on the last couple of days, just seem to have behavioral problems, some have just light sensitiviey.....and again,IMHO..it is all pit/pans...and this thing will always be a bugger to diagnose, heal, cure, because of the mulitude of expressions and causes.....AND because tics are the hardest,( it seems), to resolve, it may be given up on too early and said to be something else when it is not..... (and the right combo of protocals may take longer and if not done in X time the poor kid is then put on a wrong path) NOt that most of you don't thinkl this way already... it's more for me to voice my opinion and the new comers..and not to get discouraged... Link to comment Share on other sites More sharing options...
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