Plasma Exchange

[bhenry]

Has anyone in this forum gotten plasma exchange for their PANDAS child? What was the outcome? What is the cost? With what doctor did you have it done by? My dd has been on an antibiotic for three years and now she is responding to every virus she is exposed to. I am thinking PE would be the way to go with her. She is missing so much school.

[PowPow]

My children had it. It was very helpful, short-term. It was very expensive, about 30k. Insurance paid for it. However, this was in 2011. I believe it is difficult to get now. My daughters had it in washington dc.

I would do it again, for a crisis situation, if available.

Have you tried intensive CBT or steroids? These things were the most "bang for the buck" for us.

Best wishes. Feel free to PM me.

[LNN]

Had the same experience as PowPow. It was very helpful - short term. But my son had undiagnosed Lyme at the time, so with a chronic infection, there was no way Pex was going to be the full answer for him. At the time, we had Cigna - which used to cover it but apparently changed it's coverage policy a few months ago and no longer covers it. It was $18K negotiated rate, plus some other fees that went along with the pre-admitting consultation, plus travel. Dr L was our neurologist at the time, we had it done in DC as well.

 

At the time, I thought it was great and do think it's very helpful for a child in crisis. But I would exhaust all other options first if it were a matter of paying out of pocket.

 

Like PowPow, I am a big supporter of ERP and CBT therapy. Steroids also helped us at the worst, but again, due to chronic infection, the results didn't last.

 

Have you investigated other infections? Is she only on one abx or a combo? Sometimes a combo works better. Are you ever seeing a solid recovery between flares or is she constantly sick now?

[dcmom]

Both of my kids had PEX at Georgetown three years ago. We prepaid for one, and it was close to 30k. We did get insurance to cover both- but it was a fight.

 

I am a huge believer in PEX. It was a miracle for both of my kids. It was NOT a cure- they still have pandas flares- but it was and end to the episode they were in, and the suffering, which was great, at the time. They responded immediately.

 

I personally think PEX is the best solution for a child in all out crisis mode (as long as antibiotics and steroids have been tried).

 

It will not, however, end your daughter's pandas reactions to viruses- at least this is not what we have seen.

 

Has your daughter ever been given prednisone? Did it help?

 

We have found that jumping on any increase in pandas symptoms helps stop it from getting out of control.

[bhenry]

Both of my kids had PEX at Georgetown three years ago. We prepaid for one, and it was close to 30k. We did get insurance to cover both- but it was a fight.

 

I am a huge believer in PEX. It was a miracle for both of my kids. It was NOT a cure- they still have pandas flares- but it was and end to the episode they were in, and the suffering, which was great, at the time. They responded immediately.

 

I personally think PEX is the best solution for a child in all out crisis mode (as long as antibiotics and steroids have been tried).

 

It will not, however, end your daughter's pandas reactions to viruses- at least this is not what we have seen.

 

Has your daughter ever been given prednisone? Did it help?

 

We have found that jumping on any increase in pandas symptoms helps stop it from getting out of control.

[bhenry]

She has had PANDAS for nine years, 6 years undiagnosed. She has been on Biaxin for past three years and was really helping her until the beginning of this school year. She has had a lot of flares and has been on four prednisone bursts since September. The steroids really help but then she is around another virus and starts flaring. She has missed alot of school, and although she is much better than she was during the 6 undiagnosed years, she has had it with this illness. She has done years of EBT therapy. Thank you all for your comments.

[1tiredmama]

My ds had PEX at Georgetown in October. Dr. L. ordered it. Cigna paid for it-- after hours and hours of work and stress on our part over a 3 month time period. The total bill before insurance negotiation was $42,000. Unfortunately, our ds, who went undx'd for 14 years, experienced no improvement-- nothing at all. And, I must give you this heads- up, we got no help from the doctor's office to make it happen. Once the doctor ordered it, we found that we had to coordinate everything between the doctor's office, the hospital, and the insurance company. Each seemed to get in the way of the other, if we could get cooperation at all. Our dd was also supposed to get it. Again, no one is doing anything to get it on the books. We are not up for the fight again. Dd won't be getting PEX. That being said, I think if you are willing to pay out- of- pocket, it is much easier to get a date.

[Pandasphilly]

My experience was similar to 1tiredmama. My ds10 received pex at Georgetown in November 2012. After receiving the ok for pex we heard absolutely nothing from the doctor or hospital (or anyone) for 3 months despite daily phone calls (yes almost 90 calls). My insurance carrier contacted them and received no response so denied us. We then opted to pay as I was beyond frustrated. My son also went undiagnosed for many years and was out of the critical exacerbation period but left with many symptoms. We have not seen much difference 2 months post pex but it can take a long time to work for some. I believe if we did pex during the worst of it that he would have found relief and a possibility of better recovery. With that said we have done a ton of CBT and the program at USF did much more for him than pex. He's doing much better for it.

[PowPow]

Ditto to both tired mama and pandasphilly on the logistical portion of pex. TOTAL NIGHTMARE, to arrange and I felt like I did all the work for it.

However, pex was amazing for my girls.

[bhenry]

Ditto to both tired mama and pandasphilly on the logistical portion of pex. TOTAL NIGHTMARE, to arrange and I felt like I did all the work for it.

However, pex was amazing for my girls.

[bhenry]

Did anyone have mycoplasma as the offending virus? I wonder if it depends on what the viral trigger is as to whether plasma exchange works effectively. Strep,Myco, Lyme?

[oivay]

We had very good luck with PEX. I don't know how much insurance actually paid, but the bill was over $60K, about $11k per treatment for 6 treatments, done on an outpatient basis at CHOP.

For us, it was the only thing that worked, after trying just about everything else. She has been pretty much symptom free ever since. Her trigger was almost always strep. (very long history of documented strep infections, often in both kids.)