PEX..... who does it?

[PANDASmcnuggetsw/fry/coke]

We are past the two year mark, since the sudden onset of PANS. Daughter has had two IVIGs and still not doing well. We are thinking of PEX and wondering where it is done and how does it compare to IVIG? We are in the midwest and don't know of any facility that does it here.

 

THANKS!

[AmySLP]

Listen to the podcast that dr. t just did. He stated that for those with high titers, doing pex to cleanse the blood followed by IVIG within a few weeks may be the best option for some.

[LNN]

The only Pandas doctor I know of who does Pex is Dr L and the procedure is done in Georgetown Univ. Hosp. in DC. I've heard of someone getting it at CHOP in Philadelphia but that would be the exception, as CHOP is not generally receptive to Pandas.

 

But before you go that route, which can be very expensive unless insurance covers it. make sure you've ruled out chronic infection, mold, yeast and/or a methylation issue. All four of these pplayed a role in my kids' health and until they were addressed, they didn't move forward. The benefits of Pex won't last if an underlying trigger isn't removed first. (same goes for chronically infected tonsils/adenoids).

[LNN]

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Edited September 2, 2012 by LLM

[PANDASmcnuggetsw/fry/coke]

Thanks everybody. We will probably do more bloodwork to make sure there is no lurking myco-p. Just feel we are at a big fork in the road...do we go to Fla.for the Storch/Murphy program or PEX????

 

THANKS

[ptcgirl]

The Storch program is great. Worth trying it before or in conjunction with pex. Plus it is covered by insurance.

[FallingApart]

We did PEX and it was an absolute disaster. We had a strep carrier in the house and didn't know it. It's been 3 years since PEX and we didn't know to look for a carrier at the time. We returned to WA state only to return to the hospital for several more monthly IVIGs. Knowing what I know now, perhaps the PEX would have been effective for us without the strep carrier. But since we had that we didn't have a chance of being successful. It was definitley the low point of DD's treatment plan.

 

I don't want to scare you off because it can be very beneficial. We weren't educated enough at the time. To the detriment of our DD.

[PowPow]

Having done both PEX with 2 children, IVIG with both and then intensive therapy with both (one at USF).... I would ask:

 

how is your child doing? I mean, by that, is she (a daughter, right?) cooperative enough that she might do some therapy? If so, I would get on the phone to Dr Storch's group today!

Pex was immensely helpful for my children (and I would do it again for them or another child, if need be) but they were in crisis situations, not talking, zero hygiene, incapacitated by OCD (truly- not able to leave house, etc) Once those crisis levels were diminshed by pex and then IVIG (hard to tell for sure if that helped- it was not as definite a help as PEX) intensive therapy returned peace and smiles to their lives.

I cannot stress enough how much PANDAS parents need to consider therapy just as important as abx or whatever else we do for our kids. However, I need to qualify that by saying quality therapy. For that, we traveled 16+plus hours to FL for 3 weeks. It is a huge sacrifice for the family, seemingly impossible for many, but please, please consider it.

Also, unless you have the $30K + for pex, most insurance will not cover it, from what I have read and observed.

Feel free to PM me, if you like

 

Additionally, if she is not willing/able to do therapy, there is always Rogers Memorial OCD center-- depending on her age and a few other things...

[dcmom]

I will just ditto everything that Powpow said.

 

Both of my kids had pex, and I would do it again in a heartbeat. But, they were in the midst of a pandas crisis. PEX totally ended that crisis for both of them immediately.

 

I will say, also, that both have done Storch's program- and that is beyond unbelievable! They learned a lot, and I learned a lot. It was invaluable, and got them over the hump of some ocd stuff that was "stuck".

 

Is your child in the midst of a crisis? If so I would do pex (of course pex will not work if they are chronically ill with infection, it is not a "cure" for pandas), but I would follow that up with USF.

 

If they are not in crisis, but "stuck" with some ocd- run straight to FL.

 

Only you can really know where your child is....

[melanie]

Danny did PEX last november. 5 in 6 days. Insurance covered. Did it at nyu. Helped. I would definitely do it again if necessary.

[beeskneesmommy]

Dr. Latimer does PEX and IVig. One of the foremost PEX - PANDAS docs is Dr. Elia, formerly of CHOP. She has left, but is in process of transitioning to a new practice in or around the Phila. area. They are both treating specialists for my son. Dr. L has a very long wait list so you might want to call right away for an appt.

[EAMom]

We are past the two year mark, since the sudden onset of PANS. Daughter has had two IVIGs and still not doing well. We are thinking of PEX and wondering where it is done and how does it compare to IVIG? We are in the midwest and don't know of any facility that does it here.

 

THANKS!

 

Does your dd still have her tonsils? I get the impression that Dr. T (after listening to the interview) and Dr. L (after listening to her at the IOCDF conf) might recommend T/A even b4 IVIG.

[PANDASmcnuggetsw/fry/coke]

Thanks again everyone...she does still have her tonsils. Someone looked at them last year and said they "looked fine.

[Kiera]

Thanks again everyone...she does still have her tonsils. Someone looked at them last year and said they "looked fine.

My ds's "looked fine" also but were infected with pseudomonas when cultured and scarred and difficult to remove! Just an FYI, Dr T says to "get them out"!

[PANDASmcnuggetsw/fry/coke]

Keira, that's what I'm afriad of. The doc said there were no pits which would indicate a problem. Daughter never complains about a sore throat, but I remember chronic strep when I was a child. Had to get mine lanced before removal as I had almost a form of lock jaw, where I could not open my mouth they were so swollen...