Repeated IVIG vs. PEX for PANDAS related tics

[thomasmom]

Hey Everyone -

 

Once again I am in the panic stage. My ds9 was exposed to a strong virus and is now ticcing off the charts. He is no longer experiencing any "normal" virus symptoms just the loud (bad word) vocal tics !! He has in th epast had 3 infusions of IVIG. Each one has provided almost instant relief of his tics. (really wild to see actually....like a blanket of calm goes over him from head to toe. Dr. K pointed that out to me) This past infusion only gave us 2 months of relief. Of course if he hadn't gotten exposed then it may have gone on longer.

 

I am blessed with an apointment with Dr. L at the end of January. (seems long away) I know I will discuss the benefits on PEX for tics with her. What experiences have you guys had ? PEX sounds brutal with the femoral line and the ICU stay. Is that continuous time in the ICU or do you get to go back to the hotel ? It sounds like some peope haven't gotten relief that lasts any longer than the IVIG. AM I reading that right ? In simple terms it seems like the IVIG blocks the bad antibodies and PEX actually removes them. When he gets exposed to a virus does he just make more antibodies ?

 

Sorry I am freaking out a bit. Right before the intolerable relatives get here. One of the hardest things about PANDAS is that he can be good one day and have bad symptoms the next. I am always on edge.

 

Thanks for listening.

[Phasmid]

Don't have advice regarding either, as we haven't done IVIG yet (but scheduled for Jan. 6). Just wanted to tell you I know what you are going through with the coprolalia. That was the toughest thing ever to get through.

 

 

 

 

[LNN]

We have done both. You will have to discuss what may be best for your son's specific situation and since Dr L has experience with both, I'd give more weight to her advice than to any of ours.

 

But for what it's worth, my son said he'd do pex again if he ever needed to, but he absolutely does not want to do IVIG again. Between the two procedures, pex was far less painful and he recovered mentally and physically much quicker. You do have to stay in the ICU all three days. The central line is inserted under anesthesia (propofil) and the greatest risk of the whole pex procedure is from infection at the entrance of the line. So you cannot leave the hospital once the line is in. But Georgetown does a great job of keeping the kids entertained (Wii, crafts, internet, games, therapy dogs, very friendly staff). One parent can sleep on a cot in the private room with the child.

 

With IVIG, day one was no big deal, but day two made him very sick. Recovery took 8 weeks and it was extremely hard on the whole family. However, some kids recover much faster.

 

But one disclaimer - after we failed to stay in remission after pex and after IVIG reactions were so severe with my son, our doctors started to wonder what was keeping my son from following the script. Why was he a "non-responder"? Well, we found out afterward, because he has lyme and Bartonella. Pex can't do anything to help the lyme (tho it did get rid of my son's very serious tics) and IVIG gave him such a severe herx that it was like throwing fuel on a fire. And after 8 weeks, he was no better off than he was the week before IVIG. However, a week after starting treatment for lyme, we could see major improvements that have stuck. Ironically, the antibiotic that was added to his mix (bactrim) cats $3/mo and has done more for him that $20K in treatments.

 

I have to wonder why your son is still struggling so much after 3 IVIGs. I used to blame exposure for my son's setbacks too. But in hindsight, it was lyme. Before you shell out tons of money on either procedure, I'd highly recommend lyme testing thru Igenex or Specialty Labs. Even if you get an overall negative report that shows even one or two positive or indeterminate bands, it's worth pursuing that before doing a 4th IVIG or depleting all of his antibodies with pex. Also make sure mycoplasma and yeast are negative. There's a lot of debate about treatments. I'm not trying to add to that debate. I just urge you to make sure you aren't fighting a silent co-infection.

 

Best of luck with your decision.

Edited December 15, 2010 by LLM