PEX vs IVIG

[norcalmom]

Aetna (our provider) considers it experimental for pandas. Ironically, they have a page explaining what pandas is, and on that page they say that IVIG and plasmapherisis are used as treatment for some pandas cases.

 

 

http://aetna-health.healthline.com/smartso...finition/za1192

[justinekno]

Interesting page. We have Aetna too. Perhaps it should be printed before they change their definition!

 

Aetna (our provider) considers it experimental for pandas. Ironically, they have a page explaining what pandas is, and on that page they say that IVIG and plasmapherisis are used as treatment for some pandas cases.

 

 

http://aetna-health.healthline.com/smartso...finition/za1192

[dcmom]

We have Aetna. They were tough, but in the end they did approve the pex on the third appeal (we were lucky to appeal both procedures at one time). My husband's company really pushed for approval for us. Our doctor was amazing, and told the insurance company that they were endangering my daughter's health by delaying treatment due to the appeals nonsense. It was a very painful 2 weeks, when we were trying to get insurance approval. We actually ended up paying up front, and are now working on getting our money refunded.

 

When my first dd did pex, she was in the PICU- but the second was not, she was in the Ped HemOnc wing. I think this dramatically cut expenses. The bill for the procedure, including one extra day, was $29k. The contract rate with the insurance company was $5k (plus we paid our deductibles of a few thousand).

 

I have no concern that this is too expensive. This is the treatment that is needed, this is why we have insurance, I completely think the insurance should pay.

 

We would not hesitate to have pex on them again if they were to have another full blown episode.

[fuelforall]

Hi,

Did anyone whose child got pEX have an unsatisfying treatment?

Thanks.

Michael

[wornoutmom]

Oh don't get me started on Aetna!!!!!!!!!!!!!![

 

 

quote name=norcalmom' date='Jun 19 2010, 07:29 PM' post='72200]

Aetna (our provider) considers it experimental for pandas. Ironically, they have a page explaining what pandas is, and on that page they say that IVIG and plasmapherisis are used as treatment for some pandas cases.

 

 

http://aetna-health.healthline.com/smartso...finition/za1192

[tpotter]

One of my kids had a reaction when the blood was taken out too quickly, but since it was being done by staff who were very experienced in this area (Georgetown), they took care of the problem instantly. The overall outcome, though was excellent. I would definitely do PEX again, followed by IVIG if it was an option. Right now, though it is not an option.

[fuelforall]

My next and most important question.

 

Did any child who got PEX see their tics come back?

 

I would consider it for my child just to rid him of tics, even if anxiety/OCD come back.

[tpotter]

Again, yes. but:

 

1) My kids are older/had it longer, and I suspect we are on the road to "controlling" it, not "curing".

 

2) Tics are not as bad as they were.

 

 

If PEX was available, I would definitely do it again over IVIG for at least one of my kids. The other (17 yo) has far worse OCD, and I did not find PEX as effective on the OCD. I will let you know after he gets his IVIG (14 yo in July, and 17 yo sometime in August...latter is not yet scheduled.)

 

Where are you going to get PEX? As far as I know, no one is currently doing it.

[Fixit]

Tpotter...

on an earlier thread, when you said

 

Both my boys are on Augmentin XR 1000 mg twice daily, and Dr. L. says they will probably be on it until at least early adulthood. I accept that (she is treating as aggressively as RF, and that's fine with me.) BTW, when my 17 year old started on abx last year thanks to Dr. K, who we saw just before we saw Dr. L, who is much closer to us),his symptoms (which were horrendous, but I can't post them publicly) went away overnight (happened 3 separate times.) Even he said it was a miracle.

 

are you saying that you were able to control these symptoms post ivig or pex?

....or for some reason they just went away?

....or with just abx they went away?(until onset a year ago my ds went away also with just abx, he is now 10)

 

 

AND LLM when you posted this...it makes so much sense, thank you....as this is what my ds system points to and we have tics as main presentation

will other docs start prescribing pex...i feel like a pex/ivig combo is my real answer

 

There is no easy answer. Dr T suggested that pex would be good for kids with hyperactive immune systems and IVIG would be good for kids with immunodeficient ones. But I don't know that many of us know which we're dealing with. Some of it depends on your feelings about the risks of donor blood product. Some depends on insurance. A lot depends on where you live and what doctor you see. Only one doctor uses pex, so most likely, IVIG is your only option

Edited June 21, 2010 by Fixit

[EAMom]

If PEX was available, I would definitely do it again over IVIG for at least one of my kids. The other (17 yo) has far worse OCD, and I did not find PEX as effective on the OCD. I

 

This goes along with what I've heard Dr. K. says: PEX is better for tics, IVIG better for OCD.

[LNN]

My next and most important question.

 

Did any child who got PEX see their tics come back?

 

I would consider it for my child just to rid him of tics, even if anxiety/OCD come back.

 

I have to chose my words carefully, as I don't want to jinx it. In the year since pex, we have not had to deal with tics, despite two moderate episodes (had severe tics pre-pex).

At the start of H1N1 and the start of episode #2, I freaked because there was one hum. Nothing anyone would give any attention to, expect a PTSD mom. I held my breath. But nothing more ever came of it.

 

Oddly, DS developed tardive dyskinesia after one dose of tamiflu for H1N1, with leg spasms/twitches, as well as piano playing, but it resolved with 24 hrs of discontinuing the tamiflu. he also developed piano playing after taking zicam for a cold a few months ago. This happened the same week there was a news story about denture wearers developing neurological problems from one of the denture adhesive products that contained high levels of zinc. So my guess is that it was the zinc in zicam. He appears to be hyper-sensitive to stuff. yet he can go in the pool without any adverse reaction (thank goodness!).

 

Not to say we couldn't see something pop-up now that we're 5 days post-ivig. But pex definitely helped with the tics - and rages - so far. (tho I'll warn you - without the tics, the OCD becomes more obvious).

[norcalmom]

from what I am learning here, and from another email I had with diana P., sounds like pex gives immediate releif, but some beleive without ivig doesn't have the "healing effect" on the immune system. It removes the offending antibodies immediately, but doesn't replace them with anything.

 

This is all theoreticall and antecdotal. wish there were some longer terms studies that tracked how ivig and pex compares.

 

And - yes - true plasma exchange(which no one does) - sounds like the best way to go. So plasmapheris followed by IVIG next best thing. Get the bad stuff out, get some normal immunoglobulin there to regulate things.

 

Sounds like it is all moot since no one even doing pex at the moment. (Dr Latimer only one I saw cited as using it).