BoyIowa

I'm a Civil Engineer.

Any info is appreciated. We tried removal diets for tummy pains with no substantial results. Now attempting Prilosec. Next step is testing; probably endoscopy. Trial off abx to heal gut - PANS symptoms have been manageable so far. Ds just wants it all to go away.

My ds was diagnosed with this in utero. He had to be checked every year. The year before his onset, we received confirmation that the hydronephrosis was gone. I wonder if it could come back. We are having GI issues now.

We were just in the process. Dropped the last abx and about 3-4 days and ds got sick. Dd brought something home and is sick too. We hoped it would pass - bodies reaction to no abx. To the ped today - back on augmentin for sinus infection and possible Myco P. lower dose augmentin than ds was on, so hoping it works. Fingers crossed.

My dd and ds both take magnesium before bed. Dd, 5, magnesium citrate and ds, 9, magnesium Glycinate.

What's scary is that the doctor "is reviewing old cases and has discovered the strain in other patients who were undiagnosed."

My dd, 5 with PANDAS for less than a year, got the nasty flu this year (and shared it with me). Fever spiked at 102.5 and she slept a lot. As the fever came down and she was up and about, she was so caring and sweet and no screaming or crying or anxiety and everything didn't have to be a certain way.

Good luck, praying for you.

Did they look like these? http://www.pansawareness.org/Downloads.php

What? We have an appointment next week!

Pm me too please.

http://clinicaltrials.gov/ct2/show/NCT01617083 Antibiotic Treatment Trial for the PANDAS/PANS Phenotype (AZT)

Thanks Dedee! I didn't see the test results. I didn't quite get it because dd was recently MycoP negative for IgG and positive for IgM. Dr. Murphy said that dd titers for MycoP were really low. Not sure if they checked for active infection. Shouldn't dd have higher titers if dd had a recent IgM active infection? I will asked next visit. I was distracted by my dh sending me texts from the car with my ds, 'R u done yet?' and 'Let's go to the beach!' I can't wait for the next 2 week visit! I think we might have gotten the placebo - abx guaranteed at next visit. Have not seen any change in dd for the better.

I am happy to report that our second Abx Trial visit went much, much better than the first (no screaming). We saw Dr. Jordon and Dr. Murphy again. Dr. Murphy thinks strep was her trigger - titers high. Though dd has been exposed to Lyme, H1N1 and MycoP. Dd had to make a special stop by Dr. Mutch to say high before we left. The entire family went for the weekend and had a wonderful time on the beach and in the waves. Not looking forward to the next visit - blood draw. : (