Procedures for after PEX

[NMom]

We are trying to schedule PEX for end of September and have gotten conflicting information from the doctor and her office manager on what our son can do after PEX. I know it weakens the immune system a bit but am looking for some 'real world' experience from others who've been through this.

 

1) How much school should we expect to miss? We were originally told only a couple of days after the procedure but am now being told it could be as much as two months. That obviously makes a huge difference in how I discuss this with my son's school!

 

2) We'll have to travel to the hospital that does the procedure...should we plan to drive (2 day drive) to avoid airplanes?

 

Separate random question....When they strip off the antibodies during PEX...do they also strip all antibodies created by the vaccines he received as a baby? Is he now essentially 'unvaccinated'?

[LNN]

Your son will not be "unvaccinated". There are T-Cell antibodies that are in circulation as a result of current or recent infections and there are B-Cells (memory cells) that stay in your body forever, with the recipe to make new T-cell antibodies whenever your body encounters an infection it's had before. So when he had a vaccine for measles, his body learned how to make both B cell and t cell responses to measles. The T-cells eventually went away. The B cells to fight measles are still there.

 

Pex will remove a large percentage of T cells - both auto-antibodies associated with pandas and most other t-cells associated with recent infections. However, your body can quickly make new T cells in response to exposure to new germs. So we were told DS was fine to go out into the world the day we left the hospital. (We did try to keep him home for a week but that was partly to allow the puncture wound to heal). I can't see why you'd need to keep him home for months. I would also hope he'd be on prophylactic abx afterward.

 

Pex would remove auto-antibodies from a past strep infection. But getting strep again would undo the benefits of Pex because new auto-antibodies would be made from the B-cells, which you can't really get rid of without shutting them down in the bone marrow where B cells are made (tho some Drs feel aggressive and frequent HD IVIG may re-train those B-cells. IDK).

[NMom]

Thanks LLM! Our son is on abx now and will continue. We haven't removed tonsils though - dr. said she doesn't think we need to as he has done very well all year until this last exposure to what she thinks was a resistant form of strep. Apologies if you've already replied to one of my other posts but if you don't mind sharing I'd love to know how your son is doing since PEX. Has he been exposed and did it all come back or does PEX give you a chance to 'undo' some things permanently?

[LNN]

We had Pex in 8/09. My son had undiagnosed lyme/bartonella at the time, so the Pex remission didn't last very long. It did however, get rid of serious tics (the other kind). So no regrets but not our long term solution. He has recently been diagnosed with a zinc/B6 deficiency known as pyroluria and is significantly improved since starting supplements for the condition.

[NMom]

We are doing the Lyme testing right now with IGENIX .. not sure if the order included testing for bartonella. I want to do all the testing for coinfections as that seems to be what sets a lot of people back after PEX - and this might be our only shot at PEX. Thanks for the input. I'm terrified of putting our son through PEX but hoping that it's all worth it in the end.

[michiganpandas]

Hi....We have not had PEX, but just wanted to say that I am sooooo glad you are asking these questions...they are great questions. Good Luck in your decision and keep us updated

[NMom]

Thank you! I don't like surprises...like to plan so I want to know EVERYTHING about PEX before we go through it. Praying constantly that this is an answer for us.