Please let me know your thoughts...

[EAMom]

My only question there is why everyone else's children seemed to get results without an IVIG added to the PEX.

I've been seeing them stay on high levels of prophylactic antibiotics as preventative to getting another sentinal event. They use PEX to get rid of the antibodies, then hold off antibodies by preventing re-exposure.

 

Hi Falling Apart....

 

I agree with Buster. I think for some kids, maintaining high dose long term abs (vs. lower doses 2x weekly Azith) in CONJUNCTION with IVIG (or pex) is key. We've gotten very good results (actually even decent results with Azith. alone) with this combination. Our dd (currently 54 pounds) has been on 250mg/day Azith. since June 08. We've had excerbations (strep exposure, viruses) but nothing compared to pre-azithromycin days. Before IVIG, when we've tried to lower her dose to 125mg/day, we've noticed a difference. Since IVIG, we're not willing to mess with what is working, and plan on keeping up the 250mg/day until at least 1 year post IVIG, and then to cautiously try a lower dose.

 

I should add that our dd is a pretty extreme PANDAS case...CaM kinase ll was 253 (post H1N1) in June 09. THis is the highest Dr. Cunningham has ever seen. And she now doing fantastic with daily Azith. (since June 08) and only 1 IVIG (in Aug 09 2gm/kg over 2 days).

 

Worried dad's son is another example. He had multiple IVIG's and didn't really start to improve until they added on high dose augmentin (vs. the lower prophylactic dose).

 

Something is different/wrong with these kids immune system. Perhaps they have low levels of intracellular strep hiding out. High dose abs (long term) does seem to really make a difference.

 

I noticed that you've only had 1 round of 5 days of daily Azith., the rest has been 2x weekly. This just may not be enough. When we first started Azith in June 08, we honestly didn't see much of a difference in the first 5 days. Perhaps she was yelling at us a bit less. Still lots of OCD/anorexia. After 1 mo. of full-strength Azith, the diffence was like night and day.

 

Have you read Saving Sammy? Same thing. Long term high doses were what was needed.

 

If you have already have a rx for daily Azith, you don't really need your ped on board. Just do it. If this makes a difference, then you can get him on board after the fact.