to stop abx or not to stop?

[pr40]

we are facing a decision what to do next and find ourselves half way btw. the two opposite ends, stopping abx and doing IVIG.

Kids are, at times, absolutely fine but then there are hours (not days) when they are not. then our house looks and sounds like a loony bin -- sorry, I don't have any other way to describe it.

DD can be raging and crying inconsolably. DS can be throwing a tantrum or producing weird sounds. In all instances, they can move through these behaviors and we even see whole days without them.

Neither has been sick recently and we can no longer track the relation between them being sick and PANDAS/PANS.

As always, we would be very grateful for your insights and advice. (Signature below tells you what our kids are on.)

[Missmom]

I have thought a lot about stopping abx and have sorta come to this conclusion. And I am sure a lot of you will disagree with me but I think sometimes when your kids aren't sick or in a major flair the only way to know if the abx are really working is to stop or reduce them slowly. I want to know if my son is really better or if the abx are only keeping things at bay. I have tried this several times and a few times the symptoms returned immediately and I started abx right away. And a couple times he did fine without them until another illness came. Either way it is the same result for us. He ends up back on abx. For us ivig is a last resort, but I am pretty sure most who do ivig still end up on long term abx. Just find a good one that your child tolerates well. It is a lot of trial and error and each child is so different. Hope you have a good doctor who is willing to try and try again. It is hard to watch your child go through this but things can and will get better.

[Iowadawn]

They aren't ping ponging a bug (exposure is all that is sometimes necessary) with others in the house--a carrier of sometime?

[beeskneesmommy]

DS6 has been on big abx daily, since Sept. 2010. He slowly moved forward and got much better - but not fully. He still had significant flares. Although he was looking pretty great (about 85%) for many weeks prior, we went ahead with IVig last Sept. The only regret that we have is that we did not do it much sooner. Now, he is in excellent shape - completely 'normal' and functioning at 90-100%. However, he still has had minor flares. Although the flares have become further between as well as milder over the course of 2013, we still have him on Azith/Augmentin daily. We have to get him off of the large quantity of abx. So, with some trepidation, we will be doing a 2nd IVig on Monday. The plan is to boost up his immune system with the IG, then give him a major dose of abx (Clindo/Rifampin) to blow out any residual Strep or other infection. The Augmentin will drop off at the start of the Clindo/Rifampin, which will go for 30 days and 14 days respectively, and the Azith will stay on board throughout. Over the summer we are going to decrease the Azith to a prophylaxis. So, this is another view of an :"exit strategy" for abx.

 

*in addition, if you have not tried Diflucan (Flucanizole) on a longer term basis (30 days) and tested for Candida, you may want to take a look at that idea. This was another game changer for us and once the yeast overgrowth was treated, DS became pretty stellar.

Edited May 15, 2013 by Beeskneesmommy