Our visit with Dr. Infante

[texascatholic]

We had our appointment with Dr. Infante last Thursday. He is a big believer in the Cunningham test and although associates PANDAS/PITANDS strongly with strep, is still willing to do IVIG for us based on her Cunningham test results (we don't have elevated strep titres). We are in the midst of some tough times. Her situation seems chronic now. Our last remission of symptoms (about 1.5 months aqgo) lasted for a glorious 4 days - I got to see my real daughter again. We have done three weeks of Azith now and no real results to speak of. Wondering what to try next? With all this talk abou the Olive Leaf Extract, maybe it's worth a try. Will keep praying!

 

God bless,

Holly

[thereishope]

What was your child on when you had that good 4 days? If Azith has been the only antibiotic that has been given, you can consider trying a different one. Each child is different. Some also do well with Augmentin or even Omnicef or Keflex.

Edited September 21, 2010 by Vickie

[texascatholic]

Zithromax is the first one we've tried. The symptoms seemed to worsen when we started it. More OCD, but less tics. More anger and rages. Not sure why. The dosage has been 500mg per day (she just turned 9 and is nearly 70 pounds).

 

Praying for answers...thinking of changing to Augmentin and giving it a try. We are about to leave on a trip to CA. Having an exacerbation during a trip would not be fun.

 

Holly

[tpotter]

Have you tested for MycoP? When I went on a large dose of azith 1 1/2 months ago (mycoP IgM and IgG were extremely elevated, and probably had been doing that for the past 2-3 years), but asthma got way, way worse than it ever had been...and it was really bad before that. It took awhile, but finally improved (still bad, though,) and we are now doing the next step by getting a western blot on everyone in the family (or at least trying to...through Quest...they like to try to sneak the Elisa through, and only if it's positive do they do the Western Blot...I just found that out today, and spent 1 hour on the phone at the lab while waiting for our pediatrician to change his mind, and go straight to the Western Blot.)

[Doug]

Have you tested for MycoP? When I went on a large dose of azith 1 1/2 months ago (mycoP IgM and IgG were extremely elevated, and probably had been doing that for the past 2-3 years), but asthma got way, way worse than it ever had been...and it was really bad before that. It took awhile, but finally improved (still bad, though,) and we are now doing the next step by getting a western blot on everyone in the family (or at least trying to...through Quest...they like to try to sneak the Elisa through, and only if it's positive do they do the Western Blot...I just found that out today, and spent 1 hour on the phone at the lab while waiting for our pediatrician to change his mind, and go straight to the Western Blot.)

What is a Western Blot?