Pandasphilly Posted October 29, 2012 Report Share Posted October 29, 2012 Sorry to flood everyone with questions on my first day on this forum... We will be receiving PEX next week but have heard nothing from the doctor or hospital on how it works or what to do post pex. Questions post pex... 1. Dr. L says no need for IVIG post pex, we will see slow steady improvements over 1 year 2. Dr. T says yes and within 14-28 days. Anyone know Why? I obviously would need to plan for this. Anyone have experience with this? Regrets in not adding IVIG post pex? Clearly my son has a hyper active immune system with no deficiencies. Even on Augmentin XR1000 2x/day his symptoms only decline a bit. If he goes off I'm reminded how bad it really is (hospitalization). We are paying out of pocket (ouch but I'm desperate) so I want to make this attempt as much of a success as possible. I do not plan on returning my son to school this year since he picks up everything and it would undo PEX. 3. I'm hoping to use this year to attend USF. Does anyone know if the child can be exposed to a clinic setting right after PEX? Should he wait a few months? to rebuild antibodies. I always fear strep and other illness is residing in the offices we visit. Any advice is appreciated!!! Link to comment Share on other sites More sharing options...
dcmom Posted October 29, 2012 Report Share Posted October 29, 2012 pandas philly- I have a lot of thoughts for you, and will respond via pm, hopefully tomorrow, if we have power. I have two daughters who both have had pex at Gtown, and gone through treatment at USF. The are doing great. We have never done ivig- I personally don't think it is necessary (unless there are some definite immune deficiencies). My motto after pex is- do not rock the boat. We found after pex, a healthy, normal lifestyle was all that was needed, along with steroids in the cabinet to give immediately if a flare up happens. I can give you lots of info on what to expect at gtown and usf (usf is not a clinic setting). If you think of it, pm me your email address and I will email you. I live in NJ now. Eileen Link to comment Share on other sites More sharing options...
1tiredmama Posted October 29, 2012 Report Share Posted October 29, 2012 Just sent you a private message. Link to comment Share on other sites More sharing options...
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